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Autism and Child Psychopathology Series

Series Editor: Johnny L. Matson

Johnny L. Matson
Editor

Handbook of
Assessment and
Diagnosis of
Autism Spectrum
Disorder
Autism and Child Psychopathology Series

Series Editor
Johnny L. Matson
Department of Psychology
Louisiana State University
Baton Rouge, LA, USA

More information about this series at http://www.springer.com/series/8665


Johnny L. Matson
Editor

Handbook of Assessment
and Diagnosis of Autism
Spectrum Disorder
Editor
Johnny L. Matson
Department of Psychology
Louisiana State University
Baton Rouge, LA, USA

ISSN 2192-922X ISSN 2192-9238 (electronic)


Autism and Child Psychopathology Series
ISBN 978-3-319-27169-9 ISBN 978-3-319-27171-2 (eBook)
DOI 10.1007/978-3-319-27171-2

Library of Congress Control Number: 2016931613

Springer Cham Heidelberg New York Dordrecht London


© Springer International Publishing Switzerland 2016
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Contents

1 History and Purpose of Assessment and Diagnosis


of Autism ........................................................................................ 1
Hilary L. Adams and Johnny L. Matson
2 Types of Assessment...................................................................... 11
Jonathan Tarbox, Shannon La Cava, and Khahn Hoang
3 Purposes of Assessment ................................................................ 27
Lauren Gardner, Karyn Erkfritz-Gay, Jonathon M. Campbell,
Tera Bradley, and Laura Murphy
4 Report Writing for Autism Spectrum
Disorder Evaluations .................................................................... 45
Brian Belva, Aaron J. Fischer, Amber M. Hasty Mills,
Ashley R. Dillon, Amanda J. Beeman, and Julie Cash
5 Screening Methods ........................................................................ 65
Jonathon M. Campbell, Kirsten A. Scheil,
and Rachel K. Hammond
6 Monitoring Progress in Autism Spectrum Disorder .................. 87
Valsamma Eapen, Katrina Williams, Jacqueline Roberts,
Nicole Rinehart, and Jane McGillivray
7 Implications of ICD and DSM on Screening,
Diagnosis, and Monitoring ........................................................... 117
Sarah J. Carrington
8 Stress and Satisfaction in the Diagnostic Process ...................... 137
Ebony L. Holliday, Hillary C. Stanley, Jill C. Fodstad,
and Noha F. Minshawi
9 Diagnosing ASD in Very Early Childhood ................................. 157
Paige E. Cervantes, Johnny L. Matson, and Rachel L. Goldin
10 Preschool, Early Childhood, and Adolescence ........................... 175
Steven G. Little and Angeleque Akin-Little
11 Assessment in Adulthood ............................................................. 191
Iliana Magiati

v
vi Contents

12 Challenging Behaviors .................................................................. 209


Geraldine Leader and Arlene Mannion
13 Anxiety Disorders and Obsessive-Compulsive
Disorders (OCD) ........................................................................... 233
Brenna B. Maddox, Connor M. Kerns, Martin E. Franklin,
and Susan W. White
14 The Comorbid Diagnosis of ASD and ADHD:
Clinical and Neuropsychological Perspectives ........................... 259
Tamara May, Emma Sciberras, Harriet Hiscock,
and Nicole Rinehart
15 Depression and Autism ................................................................. 285
Maya Matheis and Nicole C. Turygin
16 Severe Psychopathology ............................................................... 301
Alex S. Cohen, Rebecca MacAulay,
Kyle R. Mitchell, Justin Ory, and Elana Schwartz
17 Assessment of Feeding Disorders in ASD:
A Multidisciplinary Approach ..................................................... 315
William G. Sharp, Rashelle C. Berry, Michele Cole-Clark,
Kristen K. Criado, and Barbara O. McElhanon
18 Assessing Sleep Problems in Children with Autism
Spectrum Disorder ........................................................................ 337
Terry Katz, Beth A. Malow, and Ann M. Reynolds
19 Cerebral Palsy and Autism Spectrum Disorder ......................... 357
Sharon Smile and Anne Kawamura
20 Intelligence ..................................................................................... 379
Chieko Kanai, Gabor Toth, Takashi Itahashi,
Ryuichiro Hashimoto, and Nobumasa Kato
21 Executive Functions in Autism Spectrum Disorder ................... 403
Adam W. McCrimmon, Ryan L. Matchullis,
Alyssa A. Altomare, and Amanda D. Smith-Demers
22 Neuropsychology ........................................................................... 427
Rupa Gupta Gordon and Matthew Calamia
23 Current Status and Future Directions ........................................ 451
Lindsey Williams and Johnny L. Matson

Index ....................................................................................................... 463


About the Editor

Johnny L. Matson, Ph.D. is Professor and Distinguished Research Master in


the Department of Psychology at Louisiana State University, Baton Rouge,
LA, USA. He has also previously held a professorship in psychiatry and clini-
cal psychology at the University of Pittsburgh. He is the author of more than
800 publications including 41 books. He also serves as Founding Editor-in-
Chief of three journals: Research in Developmental Disabilities (Elsevier),
Research in Autism Spectrum Disorders (Elsevier), and Review Journal of
Autism and Developmental Disorders (Springer).

vii
Contributors

Hilary L. Adams Louisiana State University, Baton Rouge, LA, USA


Angeleque Akin-Little Akin-Little and Little Behavioral Psychology
Consultants, Malone, NY, USA
Alyssa A. Altomare University of Calgary, Calgary, AB, Canada
Amanda J. Beeman Cincinnati Children’s Hospital Medical Center,
Cincinnati, OH, USA
Brian Belva Pediatric Psychological Associates, Louisville, Kentucky, USA
Rashelle C. Berry Marcus Autism Center, Atlanta, GA, USA
Tera Bradley University of Tennessee Health Science Center, Memphis,
TN, USA
Matthew Calamia Department of Psychology, Louisiana State University,
Baton Rouge, LA, USA
Jonathon M. Campbell University of Kentucky, Lexington, KY, USA
Sarah J. Carrington School of Life and Health Sciences, Aston University,
Birmingham, UK
Wales Autism Centre, School of Psychology, Cardiff University, Cardiff, UK
Julie Cash Pediatric Psychological Associates, Louisville, Kentucky, USA
Shannon La Cava Center for Autism and Related Disorders, Woodland
Hills, CA, USA
Paige E. Cervantes Louisiana State University, Baton Rouge, LA, USA
Alex S. Cohen Louisiana State University, Baton Rouge, LA, USA
Michele Cole-Clark Marcus Autism Center, Atlanta, GA, USA
Kristen K. Criado Emory University School of Medicine, Atlanta, GA,
USA
Ashley R. Dillon Fraser Child and Family Center, Minneapolis, MN, USA
Valsamma Eapen Infant Child and Adolescent Psychiatry, University of
New South Wales, Sydney, NSW, Australia

ix
x Contributors

Academic Unit of Child Psychiatry, South West Sydney (AUCS), Liverpool,


NSW, Australia
Karyn Erkfritz-Gay KishHealth System, Dekalb, IL, USA
Aaron J. Fischer University of Utah, Salt Lake City, UT, USA
Jill C. Fodstad Department of Psychiatry, Christian Sarkine Autism
Treatment Center, James Whitcomb Riley Hospital for Children, Indiana
University School of Medicine, Indianapolis, IN, USA
Martin E. Franklin Department of Psychiatry, University of Pennsylvania,
Philadelphia, PA, USA
Lauren Gardner University of Tennessee Health Science Center, Memphis,
TN, USA
Rachel L. Goldin Louisiana State University, Baton Rouge, LA, USA
Rupa Gupta Gordon Department of Psychology, Augustana College, Rock
Island, IL, USA
Rachel K. Hammond University of Kentucky, Lexington, KY, USA
Ryuichiro Hashimoto Cognitive Neuroscience of Language, Tokyo
Metropolitan University, Hachioji-shi, Tokyo, Japan
Harriet Hiscock Murdoch Children’s Research Institute, Parkville, VIC,
Australia
Khahn Hoang Center for Autism and Related Disorders, Woodland Hills,
CA, USA
Ebony L. Holliday Department of Psychiatry, Christian Sarkine Autism
Treatment Center, James Whitcomb Riley Hospital for Children, Indiana
University School of Medicine, Indianapolis, IN, USA
Takashi Itahashi Medical Institute of Developmental Disabilities Research,
Showa University, Setagaya-ku, Tokyo, Japan
Chieko Kanai Medical Institute of Developmental Disabilities Research,
Showa University, Setagaya-ku, Tokyo, Japan
Nobumasa Kato Medical Institute of Developmental Disabilities Research,
Showa University, Setagaya-ku, Tokyo, Japan
Terry Katz Department of Pediatrics, Children’s Hospital Colorado,
University of Colorado School of Medicine, Aurora, CO, USA
Anne Kawamura Developmental Paediatrician, Holland Bloorview Kids
Rehabilitation Hospital, Toronto, ON, Canada
Connor M. Kerns A.J. Drexel Autism Institute, Drexel University,
Philadelphia, PA, USA
Geraldine Leader National University of Ireland, Galway, Ireland
Steven G. Little Walden University, Minneapolis, MN, USA
Contributors xi

Rebecca MacAulay Louisiana State University, Baton Rouge, LA, USA


Brenna B. Maddox Department of Psychology, Virginia Tech, Blacksburg,
VA, USA
Center for Autism Research, Children’s Hospital of Philadelphia, Philadelphia,
PA, USA
Iliana Magiati Department of Psychology, National University of Singapore,
Singapore, Singapore
Beth A. Malow Department of Neurology, Vanderbilt University Medical
Center, Nashville, TN, USA
Arlene Mannion National University of Ireland, Galway, Ireland
Ryan L. Matchullis University of Calgary, Calgary, AB, Canada
Maya Matheis Louisiana State University, Baton Rouge, LA, USA
Johnny L. Matson Louisiana State University, Baton Rouge, LA, USA
Tamara May Department of Paediatrics, University of Melbourne, Parkville,
VIC, Australia
Adam W. McCrimmon University of Calgary, Calgary, AB, Canada
Barbara O. McElhanon Emory University School of Medicine, Atlanta,
GA, USA
Jane McGillivray Center for Social and Earth Development, Deakin
University, Burwood, VIC, Australia
Amber M. Hasty Mills Shelby County Schools, Memphis, TN, USA
Noha F. Minshawi Department of Psychiatry, Christian Sarkine Autism
Treatment Center, James Whitcomb Riley Hospital for Children, Indiana
University School of Medicine, Indianapolis, IN, USA
Kyle R. Mitchell Louisiana State University, Baton Rouge, LA, USA
Laura Murphy University of Tennessee Health Science Center, Memphis,
TN, USA
Justin Ory Louisiana State University, Baton Rouge, LA, USA
Ann M. Reynolds Department of Pediatrics, Children’s Hospital Colorado,
University of Colorado School of Medicine, Aurora, CO, USA
Nicole Rinehart Deakin Child Study Centre, School of Psychology, Deakin
University, Burwood, VIC, Australia
Jacqueline Roberts Autism Centre of Excellence, Griffith University,
Nathan, QLD, Australia
Kirsten A. Scheil University of Kentucky, Lexington, KY, USA
Elana Schwartz Louisiana State University, Baton Rouge, LA, USA
xii Contributors

Emma Sciberras Deakin Child Study Centre, School of Psychology, Deakin


University, Burwood, VIC, Australia
Murdoch Childrens Research Institute, Parkville, VIC, Australia
William G. Sharp Emory University School of Medicine, Atlanta, GA,
USA
Sharon Smile Developmental Paediatrician, Holland Bloorview Kids
Rehabilitation Hospital, Toronto, ON, Canada
Amanda D. Smith-Demers University of Calgary, Calgary, AB, Canada
Hillary C. Stanley Department of Psychiatry, Christian Sarkine Autism
Treatment Center, James Whitcomb Riley Hospital for Children, Indiana
University School of Medicine, Indianapolis, IN, USA
Jonathan Tarbox FirstSteps for Kids, Hermosa Beach, CA, USA
Gabor Toth Department of Education and Child Studies, Sagami Women’s
University, Sagamihara, Japan
Nicole C. Turygin Louisiana State University, Baton Rouge, LA, USA
Susan W. White Department of Psychology, Virginia Tech, Blacksburg, VA,
USA
Katrina Williams Department of Paediatrics, University of Melbourne,
Parkville, VIC, Australia
Developmental Medicine, Royal Children’s Hospital, Parkville, VIC,
Australia
Murdoch Childrens Research Institute, Parkville, VIC, Australia
Lindsey Williams Louisiana State University, Baton Rouge, LA, USA
History and Purpose
of Assessment and Diagnosis 1
of Autism

Hilary L. Adams and Johnny L. Matson

reasons: increased autism awareness, widespread


Introduction to History screening requirements, recognition of the
and Purpose of Assessment importance of early intervention, etc. (Fountain,
and Diagnosis King, & Bearman, 2011). At present, reliable
identification is possible as early as infancy
Assessment is a broad term that encompasses (Dover & Le Couteur, 2007; Klaiman, Fernandez-
evaluation of a variety of types. When consider- Carriba, Hall, & Saulnier, 2015; Zwaigenbaum,
ing assessment of autism, diagnostic assessment Bryson, & Garon, 2013). Reliable diagnosis at
is typically the first to come to mind. However, this age is crucial for access to early intervention,
assessment of individuals with autism frequently which leads to greatest developmental gains and
extends beyond diagnosis; professionals may best prognosis for most individuals (Bryson,
assess challenging behavior (e.g., self-injurious Rogers, & Fombonne, 2003). Early diagnosis is
behavior, aggression), intellectual functioning, also reportedly responsible for a variety of other
adaptive skills, etc. among this population. positive results, including lessening family stress,
Nonetheless, the current chapter covers the his- decreasing societal costs, and earlier recognition
tory of the assessment and diagnosis of autism in of medical, developmental, and psychiatric con-
particular. In later chapters, authors discuss the ditions that may co-occur with core symptoms of
other aforementioned types of assessment, as autism (Dover & Le Couteur, 2007; Klaiman
well as current diagnostic criteria and assessment et al., 2015).
practices. Despite the ability to diagnose reliably in
The diagnosis of autism spectrum disorders infants, the average age of diagnosis in the United
(ASD) has changed substantially since its incep- States remains later (e.g., average of 38 months
tion, with screening, assessment, and monitoring in a study sampled by Valicenti-McDermott,
techniques continuing to evolve. In the recent Hottinger, Seijo, & Shulman, 2012). This trend
past, children with autism were frequently identi- may be due to the finding that early diagnosis is
fied and diagnosed when they entered school. not uniform across groups. That is, variables such
This practice is changing rapidly for a variety of as race, access to relevant healthcare, and sever-
ity of symptoms influence the age of the individ-
ual when he or she is diagnosed (Wiggins, Baio,
H.L. Adams, M.A. (*) • J.L. Matson, Ph.D.
& Rice, 2006). Further, being male, having an IQ
Louisiana State University, Baton Rouge, LA, USA
e-mail: hilary.l.adams@gmail.com; below 70, and experiencing developmental
johnmatson@aol.com regression have all been associated with earlier

© Springer International Publishing Switzerland 2016 1


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_1
2 H.L. Adams and J.L. Matson

diagnosis (Shattuck et al., 2009). With increased sification (Eisenberger & Kanner, 1956). This
focus on screening, which allows for the development of diagnostic criteria based on
determination of need for further, comprehensive observations of child clients was unusual for the
assessment, diagnosis is likely to continue to time period, when criteria for disorders among
occur earlier in development. Further, recent children were simply modifications of criteria for
efforts have included the goal of determining “at- syndromes seen in adults (Rutter & Schopler,
risk” symptomatology (i.e., signs even earlier in 1988).
life that autism may develop later) (Klaiman
et al., 2015), which has the potential to allow
intervention to start before further symptoms Deviations in Conceptualizations
develop. and Criteria

In the late 1950s and early 1960s, diagnostic


Kanner’s Autism criteria and terminology for autism remained
controversial. From Kanner’s original observa-
Although Leo Kanner, an American child psy- tions, other diagnostic criteria were created but
chiatrist, is commonly credited with “discover- with notable changes. For instance, Polan and
ing” autism in the 1940s, individuals who Spencer (1959) published the 30-item Checklist
exhibited symptoms of ASD had long been rec- of Symptoms of Early Infantile Autism, which
ognized as evincing atypical development. included language distortion, social withdrawal,
Before Kanner’s Autistic Disturbances of lack of integration in activities, obsessiveness
Affective Contact in 1943, such persons were fre- and nervousness, and family characteristics.
quently considered to have an emotional distur- These criteria aimed to evaluate the “perceptual
bance or intellectual disability (Wing, 1997). The apparatus” and “psychogenic factors related to
symptoms he identified among his patients repre- deviant styles of interpersonal relatedness”
sented the core domains we recognize today as (Ward, 1970).
characteristic of autism: communication deficits, In 1958, a “Social Psychiatry Research Unit”
difficulty with social interaction and forming was opened due to the British Government’s
relationships, and the presence of restricted and impending enactment of the Mental Health Act.
repetitive behavior and interests. He used obser- There, Hans Eysenck and other influential scien-
vations of behavioral symptoms as well as parent- tists led the charge for experimental psychology,
reported family, medical, and developmental including the use of statistical analyses and
history to make his classifications. His method behavioral measures. Eysenck was a strong pro-
was based on clinical presentation and predomi- ponent of direct observation rather than psycho-
nantly atheoretical, a departure from the popular analytic theory, arguing against Freudian
psychoanalytic thinking of his era (Blacher & speculative impressions (Evans, 2013). In partic-
Christensen, 2011). ular, the psychoanalytic theory of the time sug-
Kanner coined the term “early infantile gested that autism was a “reaction to an
autism” to describe the constellation of symp- overwhelming inner or outer assault at a vulner-
toms exhibited by the children he studied able developmental stage” (Garcia & Sarvis,
(Kanner, 1951). With his publication of detailed 1964, p. 530).
case studies (Kanner, 1943), he was considered This shift in thinking toward an empirical-
the first to recognize the denoted behavioral phe- based study of psychology helped influence
notype as disparate from childhood psychosis Mildred Creak, a British child psychological pro-
(Blacher & Christensen, 2011). Nevertheless, his fessional who studied psychopathology in
first work on the subject did not specify diagnos- infancy, to unite prominent members of the field
tic criteria in 1956, Kanner and Leon Eisenberger to identify specific features of childhood schizo-
delineated specific symptoms required for clas- phrenia. Her purpose in forming the work group
1 History and Purpose of Assessment and Diagnosis of Autism 3

was to help establish quantitative, reliable not cuddly, marked physical overactivity, no eye
research of childhood psychopathology, which contact, inappropriate attachment to objects,
included creating criteria that all psychiatrists spins objects, sustained odd play, and standoffish
could agree on in order to enable population- manner. With the continual development of vary-
based studies (Evans, 2013). The work group’s ing definitions, the boundaries of the disorder
efforts resulted in a set of nine key features: remained unclear.
impairment of emotional relationships with peo- Despite a lack of agreement in the field as to
ple; unawareness of personal identity; preoccu- what exactly constituted autism, Dr. Victor Lotter
pation with particular objects; resistance to published the first paper to give the results of an
environmental change; abnormal perceptual epidemiological study of autism among a popula-
experience; acute, excessive, illogical anxiety; a tion of children of varying intellectual function in
lack of or delay in language ability; distortion in 1966. To meet his criteria and be considered to
motility patterns; and impaired cognitive func- have autism, a participant had to have a profound
tion that sometimes occurs with savant skills lack of affective contact and elaborate repetitive,
(Creak, 1961). ritualistic behavior, whereas early age of onset
Another example of criteria appearing in that was not included (Feinstein, 2010). Results sug-
era was that by Schain and Yannet (1960). Their gested a prevalence rate of 4.5 per 10,000 (Lotter,
criteria for autism included children who dis- 1966).
played “an extreme preoccupation with self and
unrelatedness to people” and who thus failed to
develop relationships with caregivers as expected Beginnings of Diagnostic
by age 2 years (p. 561). These authors noted that Assessment of Autism
they might have included cases that other profes-
sionals would not consider to have infantile In the 1960s, the practice of the family physician
autism but that they had required Kanner’s “com- completing screening for developmental issues
mon denominator” of difficulty with social rela- including autism was already in place in a less
tionships. Their criteria, therefore, did not include formal variation than today (Fotheringham,
display of insistence on sameness or similar 1969). At that time, the physician might compare
symptomatology included in Kanner’s original the child’s development to established milestones
description. (e.g., motor, communication) and gather more in-
Unlike the others originating at the time, the depth developmental history from caregivers
criteria authored by Ornitz and Ritvo (1968) (e.g., age at first concern, significant biological or
emphasized perception issues, considering them social events that affected functioning). If the
fundamental to the other problems in autism. child was school-aged, a sampling of schoolwork
Their criteria encompassed symptoms in the or a brief achievement test may be administered.
areas of perceptual integration, motility patterns, Nonetheless, in Wing and Wing’s “Early
capacity to relate, language, and developmental Childhood Autism” (1976), contributor Dr. P. H.
rate. That same year, an additional conceptualiza- Connell noted the deficiency of adequate com-
tion was published by Rendle-Short and Clancy. prehensive assessment measures for diagnosis,
Their “screening test” included 14 symptoms, of not just screening, of autism.
which a child needed to exhibit half or more per The aforementioned Checklist of Symptoms of
caregiver report, that the authors considered most Early Infantile Autism by Polan and Spencer
representative of the essential characteristics of (1959) was considered one of the pioneers of
autism (Rendle-Short & Clancy, 1968). These standardized autism assessment. This measure
symptoms were: difficulty engaging with other required that each respondent endorses or denies
children, acts as though deaf, resists learning, no the presence of a specific list of symptoms for the
fear of real dangers, resists routine change, indi- child being evaluated (Rotatori, Obiakor, &
cates needs by gestures, inappropriate laughing, Bakken, 2011). In 1964, Rimland, inspired by the
4 H.L. Adams and J.L. Matson

aforementioned checklist, attempted to translate rect for this exclusion, Reichler and Schopler
Kanner’s definition into an empirical rating scale developed a 15-scale rating system, initially
to identify early infantile autism in children up to named the Childhood Psychosis Rating Scale
age 7 years. The Diagnostic Form E-1 (Rimland, (CPRS), in 1971. Their aim was to incorporate
1964b) was a parent-report measure that included Kanner’s original description, less common char-
76 questions inquiring about birth history and acteristics of autism noted by Creak, and symp-
onset and characteristics of symptoms. The form toms of autism common in younger children. The
was subsequently revised to reflect the need for observational scale required each of the 15
information about children before age 5 years. included domains to be considered in terms of
Thus, the Diagnostic Checklist for Behavior- atypicality, frequency, and duration and given a
Disturbed Children, Form E-2 (Rimland, 1964a) corresponding rating from 1, which represented
included questions about early development (i.e., behavior within normal limits, to 4, which repre-
from birth through age 5 years). The form sented severely abnormal behavior (Schopler,
included characteristics of autism described by Reichler, DeVellis, & Daly, 1980). This measure
Kanner and symptoms of childhood schizophre- was later renamed the Childhood Autism Rating
nia described by experts in that field. According Scale (CARS). An updated version of the CARS
to Rimland, 31 children had been diagnosed by is commonly used for assessment at present.
Kanner prior to their completion of Form E-2,
and the E-2 scores correlated strongly with these
diagnoses (Rimland, 1971). In addition, he found Clarifying Distinct Definitions
that the parent-reported presence of “autistic
speech symptoms” among children with and Kanner’s purpose for his descriptions of autism
without classification of early infantile autism, as a syndrome was to recognize a constellation of
indicating language issues alone, was insufficient certain behaviors that differed from symptoms of
for an autism diagnosis (Rimland, 1971). other mental health issues (Rutter & Schopler,
Although reliability of parent-report measures 2012). To clarify the definition, work was needed
had been questioned in terms of reliability and to establish which symptoms could potentially
accuracy, Rimland argued that diagnosis should occur in autism and which were characteristic of
require retrospective information, making care- autism and therefore requisite behaviors for such
giver report a necessity (1971). To further justify a classification. Renowned psychiatrist Sir
his use of parent report rather than direct obser- Michael Rutter was extremely influential in this
vation, he also suggested that behaviors may dif- endeavor. He found three primary types of symp-
fer within and outside of the diagnostic session toms evinced by almost all children with autism
(Rimland, 1971). and that occurred much less frequently among
Soon after the publication of Rimland’s check- children with other disorders. These symptoms
list, Ruttenberg and colleagues published the confirmed Kanner’s work and are the same as
Behavior Rating Instrument for Autistic and those core domains we recognize in the field
Atypical Children (Ruttenberg, Dratman, Fraknoi, today: difficulty developing and maintaining
& Wenar, 1966). Reportedly this measure was social relationships, problems with language
unable to accurately differentiate between autism development and use, and ritualistic or compul-
and intellectual disability (Parks, 1983). Despite sive behavior (Rutter, 1970, 1971). Additional
this, teachers and therapists found the measure symptoms that occurred frequently among chil-
useful for goal formulation and in predicting future dren identified as having autism included stereo-
development among children exhibiting atypical typy (e.g., repetitive motor movements),
development (Feinstein, 2010). self-injury, poor attention span, and delayed
Both Creak’s (1961) criteria and Rimland’s bowel control (Rutter, 1970, 1971).
(1964b) original checklist lacked consideration Most researchers in Britain, Australia, Canada,
of symptoms among very young children. To cor- and the United States supported autism and childhood
1 History and Purpose of Assessment and Diagnosis of Autism 5

schizophrenia as discrete syndromes by the 1970s Rutter recognized and noted several flaws in his
(Green et al., 1984). In 1971, DeMyer and col- 1987 formulation; his four diagnostic criteria did
leagues made an empirical comparison of five not include consideration of distinct subtypes of
diagnostic systems for differential diagnosis autism, nor how to classify individuals who
between the disorders. The diagnostic systems exhibited only some of the features he delineated
they used included Polan and Spencer (1959), (Feinstein, 2010).
Rimland (1964b), Lotter (1966), Rendle-Short
and Clancy (1968), and Creak/British Working
Party (1964). The authors administered all of the Further Progress for Assessment
checklists to each of the 44 participants. Results and Toward Consensus
indicated overlap of only 35 % across all five sys- on Definition
tems, reflecting the great disparity in definitions
of schizophrenia and autism that existed in that Recognizing the need for objective diagnostic
era despite the recognition that the disorders were criteria and normative behavioral data that would
distinct. Furthermore, the authors noted that all allow for accurate comparisons across individu-
of the checklists lacked rigorous validity studies als, Freeman, Ritvo, Guthrie, Schroth, and Ball
at the time the study was conducted and, as such, (1978) developed a systematic way to code
could only serve as screening instruments of rela- behaviors among children with developmental
tively equal value (DeMyer, Churchill, Pontius, disabilities as well as their typically developing
& Gilkey, 1971). That is, any one of the check- peers. Their measure was named the Behavior
lists studied could differentiate early schizo- Observation Scale. In their factor analysis of the
phrenic and autistic children from nonpsychotic measure, the authors found that the group with
children, but not necessarily to differentiate autism was best characterized by symptoms of
within the “psychotic” group. To excuse the low inappropriate interaction with people and objects.
amount of overlap, DeMyer and colleagues This was in contrast to their group of individuals
pointed out that professionals in close collabora- with intellectual disability, who exhibited solitary
tion (e.g., working at the same facility) are much behaviors (Freeman, Schroth, Ritvo, Guthrie, &
more likely to experience agreement on diagno- Wake, 1980). Later, they further differentiated
sis than those experts who do not engage in con- between high- and low-functioning autism; “rela-
stant feedback and comparison of diagnoses, tion to examiner” best differentiated the children
despite the use of standardized or structured with low-functioning autism, whereas “solitary
assessment instruments. stereotypic” and language behavior best differen-
In the late 1970s, two definitions of autism tiated the children with high-functioning autism
that were evidence based rather than strictly the- (Freeman, Ritvo, & Schroth, 1984).
oretical were most prominent (i.e., those by In 1980, the authors of the CARS compared
Rutter (1978) and Ritvo and Freeman (1978)). their measure to the aforementioned Rimland
The definitions were similar in that they both checklist and the existing definitions to evaluate
included impairments in social development, correspondence among these options (Schopler
problems with language and cognitive function, et al., 1980). They found that their classifications,
and early onset of symptoms. Additionally, both based on behavioral observations, differed sub-
recognized that although these core symptoms stantially from those that used the Rimland
were required, variation among individuals was checklist, which were based on parent report.
extensive (Schopler et al., 1980). However, Their study also indicated significant overlap in
whereas Rutter (1978) included behavioral rigid- the Rutter and Rivto and Freeman criteria, with
ity (e.g., insistence on sameness) and stereo- those individuals meeting both criteria evincing
typed behavior (e.g., play), Ritvo and Freeman higher scores on the CARS (i.e., more likely to be
(1978) highlighted sensory issues and added dis- in the severely autistic range according to the
turbances in developmental rates or sequences. measure). Schopler and colleagues (1980)
6 H.L. Adams and J.L. Matson

emphasized that although the CARS was helpful standardized ways of measuring both emerging
for classification purposes and to provide a out of necessity to compare across populations.
“descriptive summary of a child’s pathological Behavior checklists were fairly common (e.g.,
behavior” (p. 102), the measure was not intended Behavior Rating Instrument for Autistic and
to replace the gathering of information from mul- Atypical Children by Ruttenberg, Kalish, Wenar,
tiple sources (e.g., developmental history, behav- & Wolf (1974); Autistic Behavior Checklist by
ior across settings). Krug, Arick, & Almond (1980)), but more com-
The same year, the third edition of the DSM prehensive standardized assessment measures
was released (1980, American Psychiatric were just being formulated.
Association). In DSM-III, childhood schizophre- For instance, the Autism Diagnostic
nia was excluded, and “infantile autism” was Observation Schedule (ADOS) and the Autism
included for the first time (DSM-III, American Diagnostic Interview (ADI) were both published
Psychiatric Association). Infantile autism was in 1989 (Le Couteur et al., 1989; Lord et al.,
included in the pervasive developmental disorder 1989). The ADOS was described as a standard-
category and was clearly distinguished from ized protocol to observe and code social and
childhood-onset schizophrenia. These criteria communicative behaviors by way of structured
were based on Kanner’s original descriptions and semi-structured cues for interaction (Lord
(Kanner, 1943), his more specific delineation et al., 1989). The purpose of this observational
with Eisenberger (Eisenberger & Kanner, 1956), measure was to acquire a quantifiable sampling
and Rutter’s later description of behavioral mani- of a client’s behavior in the clinic, to which other
festations of Kanner’s proposed core symptoms information (e.g., observations in familiar set-
(Rutter, 1978). tings, caregiver interviews) about the child’s
Empirical comparisons supported the differ- behavior are incorporated in the clinical synthe-
entiation between autism and schizophrenia. For sis of the case. The) ADI was described as a stan-
instance, in their comparison of DSM-III- dardized investigator-based interview of the
diagnosed children with schizophrenic disorder primary caregiver (Le Couteur et al., 1989). The
versus DSM-III-diagnosed children with infan- authors aimed to create a measure that captured a
tile autism, Green and colleagues (1984) found lifetime range of behaviors in order to differen-
that the disorders differed in terms of age of tially diagnose pervasive developmental disor-
onset, behavioral symptom profile, intellectual ders in individuals beginning at 2 years of age.
functioning, pregnancy and delivery complica- Questions cover reciprocal social interaction,
tions, and socioeconomic status (Green et al., communication and language, and repetitive,
1984). Further, the groups remained distinguish- restricted, and stereotyped behavior, as well as
able as the children developed, despite some symptoms not required for diagnosis but that fre-
overlap in behavioral profiles (Green et al., 1984). quently occur among individuals with autism and
In the late 1980s, Rutter’s (1978) four criteria related disorders. These included self-injury,
and Ritvo and Freeman’s (1978) criteria were pica, aggression, and overactivity. The authors
most commonly used, but there was still diffi- created the measure to fill the need for a stan-
culty formulating criteria that would delineate a dardized interview that covered the symptoms of
clinically homogeneous group (Fein, Pennington, autism across levels of cognitive functioning. As
Markowitz, Braverman, & Waterhouse, 1986). with the CARS, more recent versions of both
As the field worked on a neurophysiological measures are still being used today; updates and
model of the disorder, some researchers sug- clinical uses are discussed in depth in later
gested autism was a neurological disorder that chapters.
primarily affected social and emotional develop- In the later revision of the DSM-III, DSM-
ment (Fein et al., 1986). Nevertheless, focus III-R, the criteria for autistic disorder were
remained on behavioral observations and expanded in an attempt to include a broader range
caregiver-reported developmental history, with of ages and developmental levels (Volkmar,
1 History and Purpose of Assessment and Diagnosis of Autism 7

Cicchetti, Bregman, & Cohen, 1992). In their Indeed, several research groups suggested relaxed
study, Volkmar et al. (1992) found that the ICD- diagnostic algorithms following research studies
10 was the closest official diagnostic system to that found many individuals with severe, interfer-
clinical diagnosis. Additionally, there was evi- ing symptoms would be missed (Frazier et al.,
dence that DSM-III-R overdiagnosed autism 2012; Matson et al., 2012; McPartland et al.,
when compared to DSM-III or clinical diagnosis; 2012). Nevertheless, the DSM-V criteria for
DSM-III-R diagnosis was found to be highly sen- ASD were published as originally conceptual-
sitive but less specific than clinical diagnosis ized. As such, controversy continues about the
(Volkmar et al., 1992). Indeed, the DSM-III-R most accurate definition of autism; it is yet
criteria identified clinically diagnosed atypical unclear which diagnostic system will be most
pervasive developmental disorder as autism widely used in the future (Volkmar & McPartland,
(Volkmar et al., 1992). Nevertheless, Volkmar 2014). Additional information about these most
and colleagues noted that since there was no recent changes and their implications is provided
“gold standard” for diagnosis, there was no reli- later in this book.
able way to tell whether over- or underdiagnosis At present, practice parameters indicate the
was “correct,” only that it was problematic for necessity of screening for core symptoms of
research efforts that official diagnostic systems ASD, particularly issues with social relatedness
of that time differed so widely in their criteria. and display of repetitive or unusual behaviors
(Volkmar et al., 2014). A follow-up comprehen-
sive diagnostic assessment is recommended if the
The Last Decade screening indicates the presence of significant
symptomatology. Information should be gathered
In both ICD-10 and DSM-IV-TR (APA, 2004), from the child, the child’s caregivers (e.g., par-
the diagnosis of autism required evaluation of ents, legal guardians), and the child’s service pro-
current behaviors and cognitive and language viders (e.g., classroom teachers, therapists).
abilities, as well as consideration of developmen- Because genetic factors and biological markers
tal history. Evaluation was advised to take place have not yet been established for the diagnosis of
across multiple settings and could involve stan- ASD, assessment primarily consists of behav-
dardized measures. Clinical judgment of several ioral observation of the client (McCray, Trevvett,
experienced professionals was recommended. & Frost, 2014; Volkmar et al., 2014). The use of
Publication of the DSM-V in 2014 enacted standardized measures is helpful in information
substantial changes for the criteria of autism with collecting for both clinical observation and care-
significant results (APA, 2014). The new autism giver report, as data can be compared across chil-
spectrum disorder (ASD) would drop its previous dren, allowing for more accurate assessment of
subcategories and become a one-dimensional development and functioning. After diagnosis of
category. Additionally, the triad of symptom cat- autism by a qualified professional, a multidisci-
egories was reduced to just two: social communi- plinary evaluation is suggested, which may
cation/interaction and restricted and repetitive include a medical examination, genetic testing,
interests. Prior to the publication of the new crite- and/or neurological assessment (Volkmar et al.,
ria, the work group responsible for its develop- 2014). Further assessment of psychological com-
ment claimed the result would be increased ponents (e.g., cognitive abilities, adaptive behav-
specificity while maintaining sensitivity. ior) and communication, occupational, and
Nevertheless, there was a concern that individu- physical evaluations provide valuable informa-
als with less severe symptoms of autism would tion for treatment planning individualized to the
no longer meet criteria and subsequently lose client (Volkmar et al., 2014).
access to valuable services (Matson, Kozlowski, Although autism has a long, oftentimes con-
Hattier, Horovitz, & Sipes, 2012; McPartland, troversial history in terms of diagnosis and evalu-
Reichow, & Volkmar, 2012; Worley & Matson, 2012). ation, the above history provides a glimpse into
8 H.L. Adams and J.L. Matson

what was the foundation for our current practice. Psychiatry, 25(2), 198–212. doi:10.1016/S0002-
7138(09)60227-2.
The early criteria and assessment measures pro-
Feinstein, A. (2010). A history of autism: Conversations
vided a basis for our current diagnostic process, with the pioneers. New York, NY: John Wiley & Sons.
although most components have been refined, Fotheringham, J. B. (1969). Mental Development and Its
empirically tested, and standardized. As briefly Assessment by the Family Physician. Canadian
Family Physician, 15(6), 41.
discussed, current goals of assessment include
Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of
quantifying symptoms as much as possible diagnosis for autism: Individual and community factors
through both live observation and caregiver across 10 birth cohorts. Journal of Epidemiology and
report. More in-depth information regarding cur- Community Health, 65(6), 503–510.
Frazier, T. W., Youngstrom, E. A., Speer, L., Embacher,
rent assessment practices and commonly used,
R., Law, P., Constantino, J., … Eng, C. (2012).
psychometrically sound measures is provided in Validation of proposed DSM-5 criteria for autism
the following chapters. spectrum disorder. Journal of the American Academy
of Child & Adolescent Psychiatry, 51(1), 28–40.e23.
Freeman, B. J., Ritvo, E. R., Guthrie, D., Schroth, P., &
Ball, J. (1978). The Behavior Observation Scale for
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Types of Assessment
2
Jonathan Tarbox, Shannon La Cava,
and Khahn Hoang

we have found to be useful for research and


Introduction practice with individuals with ASD. Although
there are many different domains in which indi-
Assessment is an area of psychology that has viduals may need to be assessed, for the sake of
been the subject of tremendous research and space, it is not possible to cover all. This chapter
development activity, since the beginning of the is organized first by discussing each major type
discipline. Accordingly, it is not surprising that a of assessment (e.g., indirect, direct, etc.). Within
very large array of types of assessments have each section on each major type of assessment,
been created. Especially with the information further discussion of individual diagnostic, adap-
technology revolution continuing to explode, it is tive, cognitive, and functional assessments are
anticipated that the large variety of types and for- included as illustrative examples.
mats of assessment that already exist will only
grow. In this chapter, we review the major gen-
eral types of assessments as they relate to assess- Types and Formats of Assessments
ment of individuals with autism spectrum
disorders (ASD). With a topic as broad as this Obtaining a History
one, it will of course be impossible to achieve an with an Unstructured Interview
exhaustive coverage. Instead, we attempt a broad-
level survey and discussion of most major types Obtaining a thorough clinical history through an
of assessments. To illustrate our points, we dis- unstructured interview is the most basic and
cuss particular examples of each type of assess- fundamental of assessment processes. This is
ment and we focus on assessments that have generally the very first thing the assessing clini-
good psychometric research support and which cian does when meeting with the client and/or
his/her guardians. The purpose of this interview
is to gain relevant information regarding all
major medical and psychosocial variables that
might be relevant, including the client’s pre-
J. Tarbox (*) and postnatal periods, developmental mile-
FirstSteps for Kids, Hermosa Beach, CA, USA
e-mail: jtarbox@firststepsforkids.com stones and achievements, health and medical
background, social and play development, adap-
S. La Cava • K. Hoang
Center for Autism and Related Disorders, tive functioning, psychological and psychiatric
Woodland Hills, CA, USA care, and academic/work histories. Interviews

© Springer International Publishing Switzerland 2016 11


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_2
12 J. Tarbox et al.

should ascertain historical information regard- and providing comprehensive recommendations


ing previous diagnoses, treatment interventions to the individual or family.
and evaluations, and behavioral presentations. Clinical interviews can range in structure from
This initial interview also serves the very impor- informal, open-ended interviews to structured
tant function of establishing rapport between interviews, designed as standardized measures
the clinician and the individual being assessed that are coded and scored to align with the diag-
and/or his/her caregivers. Interviews can be nostic criteria of ASD. Multiple interviews across
conducted with the referred individual and his/ interviewees and designs can be utilized in con-
her primary caregivers (e.g., parents, family structing the most appropriate and comprehen-
members, legal guardians) depending on the cli- sive battery aimed at addressing the referral
ent’s age and level of functioning. In addition, question of the client. More specifically, a struc-
teachers, intervention providers, and childcare tured diagnostic interview with a parent may be
workers may be interviewed. supported at the conclusion of a semi-structured
intake interview with the same parent.
Diagnostic The unstructured clinical interview offers a
The purpose of the diagnostic interview is to free-flowing and less rigid approach which is
obtain narrative information from caregivers ideal for building rapport with the interviewee.
and/or the client regarding areas of functioning Although this approach is less direct, it is a good
that are relevant to the diagnostic criteria of idea to have an idea going into the interview of
ASD. For very young children, this will primar- specific topics to discuss. Information gathered in
ily consist of interviewing the parents. For older an ASD clinical interview will focus on the cli-
and more verbal children, direct conversations ent’s presenting concerns, development, and
with the client are highly valuable. According to behavioral functioning across contexts (e.g.,
Jerome Sattler (2001), an unstructured interview home, school, community), with specific atten-
with a child, depending on the child’s age, can be tion paid to typical ASD symptomatology. More
useful in understanding how the child views the specifically, information should be gathered in
referral and his/her family, teachers, and peer the following domains, with ideas for subtopics
group. When considered for an ASD diagnosis, listed:
an intake with the child may assist in determin-
ing the level of severity of the diagnosis if ASD • Presenting Concerns
criteria are met. – Description of the Problem
When conducting a diagnostic interview with – Onset of Symptoms
adolescents or adults who perhaps never received • Developmental History
a childhood diagnosis of ASD, a new diagnosis – Milestones: Single Words, Sentences,
may be dependent on specific criteria of com- Sitting, Crawling, Walking, Toileting,
munication, socialization, and restricted, repeti- Riding a Bicycle, Dressing, Eating
tive patterns of behaviors being met through – Hobbies/Interests
historical recall of the client’s behaviors during – Reaction to Puberty
his/her early developmental period, the typical – Periods of Regression in Development
onset of pervasive symptomology (American • Medical History
Psychiatric Association, 2013). In addition, – Current Diagnosis/Diagnoses
interviews should obtain information regarding – Medication History
the client’s current presenting problem and – Sleep
behavioral concerns in order to develop a refer- – Feeding and nutritional history
ral question for the purpose of conducting a thor- • Psychological, Psychiatric, and Treatment
ough evaluation, incorporating one’s clinical History
impressions with formal testing results in the – Current Diagnosis/Diagnoses
form of a written report and in-person feedback, – Previous Evaluations
2 Types of Assessment 13

– Treatment History utilizing an expanded version of the subtopics


– Suicidality/Homocidality included in the unstructured interview section and
• Social Development utilizing inquiries of frequency, duration, onset,
– Engaged or Parallel Play description, importance, antecedent, and conse-
– Current Play Behaviors quence, the interviewee can construct an elaborate,
– Peer Interests yet fluid, series of questions:
• Academic and/or Work History
– IEP services • “What are some of your concerns?”
– Classroom Type • “Please describe the most important concern
– Part-Time/Full-Time Aid you have”
– Work History • “How often does this behavior occur?”
– Current Volunteer or Paid Employment
• Family History Overall, if administration time is a concern, a
– Current Living Arrangements/Family semi-structured interview may be the best choice.
Constellation The interviewer can accomplish an established
– Married/Separated/Divorced design of questions in a short period of time and
– Language(s) Spoken in the Home, etc. the structured nature of the interaction tends to
– Family Medical/Psychological/Psychiatric keep both clinician and caregiver on-track and
History on-time. If the client is demonstrating symptoms
– Cultural Background of multiple and conflicting diagnoses, an open-
• Behavioral Presentation ended and unstructured interview may be appro-
– Restricted/Repetitive Interests priate in that it offers the interviewee the
– Echolalia flexibility to probe distinct elements of the cli-
– Idiosyncratic Speech ent’s presentation that may be otherwise missed
– Attention/Hyperactivity with the more agenda-like approach of a struc-
– Atypical Behaviors tured interview. Many clinicians prefer a combi-
nation of the two, particularly if time allows.
Unstructured interviews are recognized for
helping examiners establish a high level of rap- Functional Assessment
port with the interviewees. In addition, they Unstructured clinical interviews are a crucial and
facilitate a broad and flexible exploration of foundational part of the process for conducting a
the client’s background. However, unstruc- functional assessment of challenging behavior in
tured interviews have potential limitations, individuals with ASD. Many of the points dis-
including subjectivity and potentially low reli- cussed above also pertain to the functional assess-
ability and validity. For these reasons, most cli- ment process and those points will not be repeated
nicians prefer to supplement the interview here. Instead, we will briefly summarize some of
process with structured and/or semi-structured the points that are unique to conducting unstruc-
interview procedures. tured functional assessment interviews.
The semi-structured interview is more goal- After obtaining a basic description of the prob-
oriented than the unstructured interview, in that it lem and the main reasons for concern, the clinician
provides a list of questions, yet it can be manipu- will begin asking open-ended questions that
lated as needed. It is less rigid than the structured attempt to identify the common antecedents
interview. Semi-structured interviews address (events in the environment that immediately pre-
domains similar to those listed above in the unstruc- cede challenging behavior) and common conse-
tured interview section. In addition, interviewers quences (events in the environment that
may construct semi-structured formats by convert- immediately follow challenging behavior), in
ing relevant areas of functioning into specific ques- order to obtain information about environmental
tions (Groth-Marnet, 2009). More specifically, events that may contribute to maintaining the
14 J. Tarbox et al.

behavior. Researchers have shown that the vast described earlier, the clinician can ask questions
majority of challenging behavior displayed by such as these, in order to assess for the less com-
individuals with developmental disabilities is mon functions:
maintained by one or more of the following four
basic functions: (1) access to attention (aka, “atten- • Does the individual always need to be in con-
tion function”), (2) escape from non-preferred task trol? Does he/she seem to be using his/her
or demands (aka, “escape function”), (3) access to challenging behavior to be in control of the
preferred items or activities (aka “tangible func- situation?
tion”), or (4) automatic reinforcement (aka “self- • Is he/she perfectly happy to be alone? Does
stimulatory”) (Iwata et al., 1994). Therefore, when he/she seem to be using his/her challenging
conducting an interview, it is wise to direct your behavior to get you to leave him/her alone?
questions and conversation toward obtaining • Does he/she engage in the challenging behav-
information that will provide evidence for and ior when you interrupt him/her from engaging
against those primary four functions. in his/her repetitive behavior/rituals/routines?
Some generic, open-ended questions that can Is he/she highly insistent that certain things or
be useful include: routines be done exactly the way they are sup-
posed to? Is he/she particularly inflexible?
• What time of day does the behavior usually
occur? Because the interview is unstructured, the
• In what settings does the behavior usually caregiver is encouraged to provide as much infor-
occur? mation as they can regarding the conditions in
• What are some common triggers for the which the challenging behavior occurs. As the
behavior? caregiver begins to specify particular events that
• What do you or other caregivers do that is might suggest one particular behavioral function
likely to provoke the behavior? or another, the clinician adjusts his/her questions
• What reactions do you and other caregivers to further pinpoint a likely function and to rule
usually have to the behavior? out other possible functions. It is often useful for
• How do you usually manage the behavior? the clinician to ask questions about whether the
• Does the behavior occur when the individual behavior occurs in conditions that one would
is not receiving very much attention? expect it not to occur, given particular functions.
• Does the behavior occur when a caregiver For example, “Does the behavior occur when the
asks the individual to do something he/she individual is already receiving lots of attention?”
doesn’t want to do? If the answer is yes, then that would lend evi-
• Does the behavior occur when a caregiver dence against an attention function. Similarly, it
does not give the individual an item or activity is often useful in helping to rule out an escape
that the individual wants? function to ask whether the individual engages in
• Does the individual do the behavior at a high the behavior when no one is asking him/her to do
rate, across settings and contexts, regardless anything. If the answer is yes, an escape function
of how caregivers respond? seems unlikely, as there is nothing for him/her to
be escaping from at such times. Another useful
Other less common functions, such as escape question to ask is “When the individual is engag-
from attention, access to control over the envi- ing in the behavior, what is a sure way to get him/
ronment, and access to stereotypy/rituals/rou- her to stop?” Answers to this question often iden-
tines have also been identified (Hanley, Iwata, & tify the reinforcer for the behavior. For example,
McCord, 2003). Although there is initial evi- if the answer is something like “Stop asking him
dence that these functions exist, research has to do something,” then that might point to an
generally suggested that they are less common. escape function, whereas an answer such as “Just
Still, if the initial interview does not conclusively give him the thing he wants,” might point to a
point to one of the more standard four functions tangible function.
2 Types of Assessment 15

Records Review vant environmental variables and settings. In


other words, in a records review, you do not
Requesting formal records can be a useful means know what you do not know.
of obtaining a detailed history of a client’s back-
ground. Thus, there is general consensus that any Limitations
assessment process includes a records review Several drawbacks of record reviews are worth
early on. discussing. Depending on the nature of the
request for information (e.g., client request ver-
Diagnostic sus agency to agency request), applicable privacy
In order to obtain relevant background informa- laws (i.e., Health Insurance Portability and
tion for the diagnostic assessment process, medi- Accountability Act of 1996 (HIPAA)) may come
cal, psychological, psychiatric, academic, speech into effect and must be abided by. In such
and language, physical and occupational therapy, instances, a written authorization to disclose the
and other forms of documented records may be requested protected health information (PHI)
requested to supplement information acquired must be received by the releasing agency. If inter-
through clinical interviews, screening measures, agency communications regarding the care of the
and parent surveys. Information provided in client are to be conducted, both agencies must
previous diagnostic evaluations, Individual obtain written authorization to disclose PHI. An
Education Program (IEP) triennial reviews, additional limitation with record reviews is that
genetic testing lab reports, and other records may records may not always be accurate or may be
indicate concerns in specific domains for the cli- incomplete. Therefore, caution in interpreting
ent you are evaluating or provide evidence ruling records is warranted.
out concerns in other areas. Overall, reviewing
client records can assist in answering the client’s
referral question with a more inclusive and sup- Formal Indirect Assessments
ported interpretation of results.
Indirect assessments are formal assessments that
Functional do not require direct contact between the clini-
When conducting a functional assessment of cian and the client to complete the assessment.
challenging behaviors displayed by an individ- Instead, the clinician has contact with parents,
ual with ASD, the clinician should review what staff, or other caregivers. Indirect assessments
relevant functional assessment activities have include both instruments that are completed inde-
been done in the past. In theory, if a good-quality pendently by an informant (e.g., inventories, rat-
functional assessment has been done on the same ing scales) and those that are completed by the
behavior relatively recently and that assessment examiner, in a structured or semi-structured inter-
produced what appear to be conclusive results, it view style with the respondent (e.g., question-
may not be necessary to repeat a comprehensive naires, checklists). Respondents typically include
assessment. Indeed, doing so may be a waste of parents and caregivers, but other individuals may
the client and clinician’s time. However, it is also be incorporated in the process, such as
important to note that the functions of challeng- teachers.
ing behaviors often change over time, so if the
previous functional assessment is more than a Independent Measures
few months old, conducting a new one—particu- Independent measures, such as parent inventories
larly a brief one, such as an indirect assess- and checklists, encompass a variety of develop-
ment—may well be warranted. It is also worth mental domains, which may include a client’s
noting that it is impossible to determine from a functioning in the areas of diagnostic characteris-
records review whether existing functional tics, adaptive abilities, social skills, executive
assessments succeeding in addressing all rele- processes, socio-emotional capacity, and many
16 J. Tarbox et al.

more. These measures generally take 15–60 min an informant-based behavior checklist that assesses
to complete and can be completed by the care- ASD symptoms in children 17–37 months of
giver while the examiner is working with the cli- age. In addition to screening for ASD traits and
ent directly. symptoms, the BISCUIT contains subscales that
The Vineland Adaptive Behavior Scales, assess for comorbid symptomology, as well as
Second Edition (Vineland-II), is a measure of an challenging behavior. The BISCUIT has strong
individual’s adaptive skills, specifically in the demonstrated reliability and validity (Matson
areas of communication, socialization, daily liv- et al., 2009).
ing, and motor skills. The Vineland-II also
assesses an individual’s level of maladaptive Directly Administered Measures
behavior. The Vineland-II is conducted using two Indirect measures that are conducted between the
different methods, which include the Survey examiner and a respondent exist for assessing a
Interview Form and the Parent/Caregiver Rating large variety of areas of functioning. Since these
Form. The rating scale format is an independent measures are administered and led by the exam-
method of gaining insight into a client’s behavior iner, the duration of time spent may be longer
by having a respondent who is familiar with the than with independent measures, as the examiner
client rate their behavior (Sparrow, Cicchetti, & may pose further questions to clarify responses
Balla, 2005). This method may be susceptible to or if the respondent requires an explanation of
biased responses for various reasons. Therefore, questions they are being asked. In addition, many
it is preferred that the interview format be admin- of these measures are simply more comprehen-
istered (Sparrow et al., 2005). sive and therefore require more time to adminis-
The Vineland-II was standardized on males ter, as well as more prior training and experience
and females ranging from birth to 90 years old on the part of the examiner.
and of various race/ethnicity, socioeconomic sta- The Autism Diagnostic Interview-Revised
tus, and geographic region (Sparrow et al., 2005). (ADI-R; Lord, Rutter, & Le Couteur, 1994) is con-
Furthermore, the Vineland-II gathered data from sidered a “gold standard” assessment tool and is a
specific clinical groups in order to identify defi- 93-item standardized, semi-structured interview
cits in adaptive behavior, such as “attention- defi- that is designed to assess for potential ASD diag-
cit/hyperactivity disorder, autism-nonverbal, nosis. The ADI-R can be used with children with
autism- verbal, emotional or behavioral distur- a mental age of at least 2 years. Administration
bances,” etc. (Sparrow et al., 2005, p. 91). takes 90–150 min, including scoring time. The
The internal consistency reliability calculated assessment produces categorical scores in three
for the Vineland-II, interview form and rating domains: (1) Language/Communication, (2)
scale form, utilized the split-half method. Overall, Reciprocal Social Interactions, and (3) Repetitive
the Vineland-II subdomain has a “reliability esti- Behaviors/Interests. The ADI-R has been found
mate … subdomain reliabilities”, using the to have good reliability and validity (Lord et al.,
Spearman-Brown Prophecy, indicate more than 1994). Advantages of the ADI-R include the fact
half are 0.90 or greater, and only six are below that it is highly detailed and widely respected.
0.80” (Sparrow et al., 2005, p. 95). A disadvantage is that it is time-consuming and
The Gilliam Autism Rating Scale-3 (GARS-3; requires advanced training to administer.
Gilliam, 2006) is a commonly used independent
indirect diagnostic tool. The GARS-3 is a 56-item Indirect Functional Assessments
rating scale that can be completed by a parent, A variety of structured, examiner-administered
teacher, or clinician. The GARS-3 has been indirect functional assessments have been devel-
shown to have good internal consistency, test- oped and researched. All indirect functional
retest reliability, and inter-rater reliability. assessments probe knowledgeable caregivers for
The Baby and Infant Screen for aUtistIc Traits information regarding the common antecedents
(BISCUIT; Matson, Boisjoli, & Wilkins, 2007) is and consequences of the challenging behavior.
2 Types of Assessment 17

For example, the Questions About Behavioral behavior. It is common for caregivers to reprimand
Function (QABF; Matson, Bamburg, Cherry, & individuals when they engage in challenging
Paclawskyj, 1999) consists of 25 questions that behavior, so it is quite common for attention to be
caregivers rate in terms of frequency, by answer- the most common consequence of challenging
ing a Likert-type scale of “never,” “rarely,” behavior, even when attention is in no way rele-
“some,” or “often.” The QABF yields results that vant to maintaining the behavior. For all of these
suggest one or more of the following potential reasons, best practices generally suggest that
functions: attention, escape, tangible, physical, indirect functional assessments be supplemented
and nonsocial. The QABF has been shown to with descriptive and experimental analyses,
have good psychometric properties, including which will be discussed later in the chapter.
good validity (Matson et al., 1999), test-retest
reliability (Paclawskyj, Matson, Rush, Smalls, &
Vollmer, 2000), inter-rater reliability (Nicholson, Direct Assessments
Konstantinidi, & Furniss, 2006), internal consis-
tency (Shogren & Rojahn, 2003), and convergent Direct assessments are standardized tools con-
validity with experimental functional analyses ducted with the client and are used to measure an
(Tarbox et al., 2009). array of functioning (e.g., cognitive, language,
Indirect functional assessments enjoy many of achievement, executive functioning, etc.). Direct
the same strengths as diagnostic and other indi- assessments provide an opportunity for the exam-
rect assessments. For example, they are generally iner to observe and document the client’s perfor-
the lowest cost, both in terms of time and finan- mance in specified areas of functioning, as well
cial resources. They are entirely safe, in that they as behavior toward test—taking and compliance
do not require direct contact with challenging in a novel situation, with a novel individual.
behavior. Finally, they are often the only viable Direct assessments vary in the degree of structure
choice for bringing functional assessment to and demand placed on the client. For instance,
scale in the broader community. For all of these some direct measures require a client to sit at a
reasons, indirect functional assessments have table with the examiner for a specific duration of
become a standard part of a best practices time (e.g., WISC-IV), while others include more
approach to functional assessment of challenging naturalistic efforts (e.g., ADOS-2; Lord, Rutter,
behavior in individuals with ASD. DiLavore, & Risi, 2008).
Despite their many strengths, indirect func-
tional assessments, like other indirect assess- Semi-Structured Administrations
ments, also suffer from a number of weaknesses. Semi-structured direct assessments involve pro-
First, they depend on the recall capability of the cedures that specify some part of the interaction
caregivers who answer the questions on the between the clinician and client but do not struc-
assessment. Caregiver recall can be inaccurate, ture the entire interaction. A classic example in
exaggerated, or unreliable. Second, since the cli- diagnostic assessment is the Autism Diagnostic
nician does not directly observe the behavior and Observation Scale, Second Edition (ADOS-2;
the environment in which it occurs, many rele- Lord et al., 2008). The ADOS-2 consists a “gold
vant variables may be missed, that otherwise standard” diagnostic assessment and consists of a
might be apparent from direct observation. semi-structured direct assessment, wherein the
Finally, even at best, the relations that indirect assessor and client engage in scenarios that assess
assessments suggest between behavior and envi- communication, social interaction, play, and
ronmental variables are only correlational. Even restricted repetitive behaviors. Scenarios are con-
if caregiver recall was perfect, merely noting that ducted in a standardized manner and a standard-
a particular consequence frequently follows ized scoring rubric is used to score the client’s
behavior (e.g., attention) does not guarantee that responses. Five different modules of scenarios
attention is the maintaining consequence of the are available for the assessor to implement,
18 J. Tarbox et al.

depending on the age and communication level challenging behavior is likely. It is also important
of the client. The time required to administer the for the clinician to observe the client across a
ADOS-2 ranges from 40 to 60 min. Advantages variety of settings that allow for the opportunity
of the ADOS-2 include that it is widely respected of behaviors of various functions to occur. For
and that directly observing the client engage in example, if the client is always receiving large
social interactions helps give the clinician infor- amounts of attention during the observation,
mation that they may miss when only interview- attention-maintained behavior may never occur,
ing caregivers. A major disadvantage is that and therefore, attention may not be identified as a
extensive training is required to administer the function, yielding a potential false-negative result
ADOS-2 in a reliable manner. for attention. Similarly, if the client is never asked
to complete non-preferred task demands during
Structured Administrations the observation, it is unlikely that he/she will
Structured assessments are more commonly used engage in escape-maintained behavior, and there-
than semi-structured ones and comprise much of fore, escape would likely not be identified as a
an assessment battery, be it developmental, cogni- function, again potentially yielding a false-
tive, or other. Among the most commonly used negative result for escape.
structured assessments is the Wechsler series of In unstructured ABC recording, the clinician
intelligence tests. The Wechsler Preschool and records narrative data of the antecedents and con-
Primary Scale of Intelligence, Third Edition sequences. When the observation is complete,
(WPPSI-III; Wechsler, 2002), is a test of cognitive the narrative data are then coded in terms of the
ability for children ages 2:6–7:7. The test requires categories of antecedents and consequences that
30–60 min to administer, depending on age, and they indicate and the data are summarized,
yields full-scale IQ scores, as well as primary and according to function. In structured ABC record-
ancillary index scores. The Wechsler Intelligence ing, the clinician uses a datasheet that contains
Scale for Children, Fourth Edition (WISC-IV; prespecified categories for antecedents and con-
Wechsler, 2003) is designed for older individuals, sequences and he/she indicates all categories that
ages 6 through 16. The WISC-IV requires were observed each time the target behavior
60–90 min to administer and yields full-scale IQ occurs. Table 2.1 is a sample structured ABC
scores, index scores, and subtest scaled scores. recording datasheet.
Both Wechsler tests are very widely respected and Unstructured ABC data have the advantage of
have well-established psychometrics. allowing the clinician to record anything that
might be relevant and to then analyze the rele-
Direct Descriptive Functional vance of each detail later. Disadvantages of
Assessment Methods unstructured ABC data are that it can be time-
A variety of direct functional assessment meth- consuming and effortful to write the narrative
ods are commonly used to assess the challenging and it may not be possible to write fast enough
behavior of individuals with ASD. Since space when observing particularly high-rate behavior.
does not permit an exhaustive review of the vari- In addition, the necessity for interpreting the
ous methods, we will briefly discuss the most narrative after the observation introduces an
common two types: structured and unstructured additional source of potential subjectivity in the
antecedent-behavior-consequence recording process. Structured ABC recording enjoys the
(ABC recording). In both types of ABC record- advantages of being faster and easier to record in
ing, the clinician observes the client in his/her the moment and being relatively less subjective.
natural environment and, each time the target A disadvantage is that the prespecified catego-
challenging behavior occurs, the clinician records ries on the datasheet may fail to capture all rele-
the antecedents and consequences of the behav- vant variables that the clinician observes.
ior. It is important for the clinician to observe the However, the clinician can always jot down any
client across a variety of settings in which the other anecdotes in the margin of the datasheet or
2 Types of Assessment 19

Table 2.1 Sample structured antecedent-behavior-consequence (ABC) recording datasheet. The clinician uses struc-
tured categories to record behaviors, as well as events that occur immediately before and after them.
Antecedents:
LA = Low attention, Dem = Demand given, Tang = Preferred item removed,
None = None of the above
Behaviors:
(1) ______________ (2) ________________ (3) _______________ (4)_______________
Consequences:
Att = Attention given, Esc = Escape given, Tang = Preferred item given, None = No consequence
Antecedent Behavior Consequence
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None
LA/Dem/Tang/None 1/2/3/4 Att/Esc/Tang/None

in a section of the datasheet that is designed for from limitations. First, like indirect assessments,
additional comments. the information they produce is only correla-
Regardless of whether data are collected via tional. It is possible that the relations observed
structured or unstructured ABC recording, the between behavior and environment during the
clinician must then summarize the data and inter- assessment are mere correlation and do not actu-
pret the results according to function. It is worth ally point to the maintaining variables for the
keeping in mind that, as discussed in the section behavior. Perhaps the most concerning limitation
on indirect functional assessments above, the vast is that several studies have shown that a large
majority of research has shown that more than proportion of descriptive assessments produce
90 % of challenging behaviors displayed by either invalid or inconclusive results (Lerman &
individuals with developmental disabilities are Iwata, 1993; Tarbox et al., 2009).
maintained by attention, escape, tangible, auto-
matic reinforcement, or some combination. Experimental Functional Analyses
Therefore, it is prudent for the clinician to look In particularly severe or perplexing cases, or
for these potential functions first, before becom- when indirect and descriptive functional assess-
ing overly creative with potential interpretations ments produce inconclusive results, best prac-
of the descriptive data. tices often call for simpler functional assessments
Direct descriptive functional assessments to be supplemented by experimental functional
have several strengths and limitations worth not- analyses (EFA; Iwata, Dorsey, Slifer, Bauman, &
ing. One strength is that they allow the clinician Richman, 1982). An EFA is a procedure where
to directly observe behavior, so it is possible that antecedents and consequences for challenging
he/she will identify important environmental behavior are intentionally manipulated to deter-
variables that would be missed in an indirect mine which antecedents reliably evoke the
assessment. Another strength is that they are rela- behavior and which consequences reliably rein-
tively easy to implement and only require sound force the behavior. The classic procedure involves
observational data collection procedures. Finally, randomly alternating five analogue conditions:
a strength of descriptive assessments is that they (1) attention, (2) escape, (3) tangible, (4) alone or
are safe, in that the clinician need not interact no interaction, and (5) a control or play condi-
with the individual engaging in challenging tion. Each of the first four experimental condi-
behavior, they need only observe. Like any other tions test one putative function of challenging
assessment, descriptive assessments also suffer behavior by setting up antecedent conditions that
20 J. Tarbox et al.

Table 2.2 Conditions of an experimental functional analysis for challenging behavior


Consequence for
Condition name Potential function Antecedent challenging behavior
Attention Social attention Pay no attention to client Brief social attention
Escape Escape from or avoidance High rates of low-preferred 30-s break from task
of demands task demands demands
Tangible Access to preferred items Denied access to preferred 30-s access to preferred
of activities items or activities items or activities
Alone/ Automatic reinforcement/ No items or activities, no None
no interaction self-stimulation demands, no social contact
Play/control N/A High attention, no demands, None
Serves as a control for continuous access to preferred
other conditions items and activities

are likely to evoke the behavior, if indeed it has practice, despite their being considered the “gold
that particular function, and consequences that standard” for functional assessment in research.
are likely to reinforce the behavior, if indeed it
has that particular function. The fifth condition
serves as a control condition, wherein none of the Clinical Judgment
antecedents are in place and none of the conse- in the Assessment Process
quences are delivered. Table 2.2 depicts the con-
ditions and the antecedents and consequences As has been discussed throughout this chapter,
that are presented in each. Sessions of each con- clinicians use a wide variety of tools and proce-
dition are repeated in a random order until dif- dures when assessing an individual with
ferentiation in the rate of challenging behavior ASD. Some tools and procedures have come to
between conditions is observed or until it be referred to as “gold standard” procedures. For
becomes apparent that the analysis is not produc- example, the ADOS and ADI-R are often referred
ing interpretable results. to as gold standard diagnostic procedures.
Experimental functional analyses have several Similarly, EFAs are often referred to as gold stan-
advantages. First, substantial research has shown dard functional assessment procedures. However,
that they produce interpretable results in a large in both diagnostic and functional assessments, it
percentage of cases. For example, a large-scale is worth noting that gold standard procedures
review of research on EFAs found that 95.9 % of tend to be more costly and labor intensive and
EFAs produce differentiated results (Hanley require specialized training that a very small
et al., 2003). However, it should be noted that this percentage of the population of clinicians possess.
was a review of EFAs published in research, not Even when a clinician does possess the resources
a review EFAs actually done in real-life settings, and expertise required to implement gold stan-
so it is possible that the actual real-life success dard procedures, it is critical to remember that no
rate of EFAs is lower. A significant disadvantage one modality or instrument is more valuable than
of EFAs is that they require specialized training clinical judgment. It is important to remember
to administer and very few clinicians are avail- that results from any one modality (e.g., cogni-
able who possess that training. Even among tive evaluation, diagnostic observation, func-
Board Certified Behavior Analysts, the popula- tional assessment, etc.) comprise only a single
tion of clinicians who possess the greatest train- component of the full evaluation process. For
ing and expertise in functional assessment, only a example, results of a single measure may indicate
very small minority possess the skills to safely strengths and weaknesses in domains of intellec-
and validly conduct EFAs. The unfortunate result tual functioning, but not account for possible
is that EFAs are very rarely done in real clinical delays in the realm of social development or
2 Types of Assessment 21

compensatory adaptive skills. While findings to draw from the findings of one measure to
may provide insight to a particular observed inform his/her decision to administer additional
behavior, they may be based on a limited sample measures as he/she attempts to answer the refer-
of time or a novel setting. Parental endorsements ral question. During the interpretation of data, an
may suggest a high or low frequency of a behav- individual’s test performance in one domain of
ior in one setting that is not observed as general- functioning can assist in the understanding of
izing to other settings. Similarly, even though an another domain. More specifically, a clinician
EFA is likely to produce the most reliable and can utilize an individual’s performance in the
valid functional assessment results, it is, by defi- areas of cognition and language to support his/
nition, analogue and contrived and therefore may her interpretation of that individual’s functioning
produce behavior that occurs in reaction to in the areas of social and communication abili-
clinician-contrived circumstances, rather than ties (Lord et al., 2012).
behavior that is representative of the client’s real
behavior in everyday life. Although little or no
research has demonstrated it, it is hypothetically Behavioral Observations Impacting
possible to “shape up” a new function for chal- Interpretations
lenging behavior that was never before present,
merely by systematically giving a particular con- The behavioral observation section of an ASD
sequence for a behavior during an EFA. Put dif- evaluation focuses on the behaviors witnessed
ferently, it is possible that a client may actually throughout the testing session(s). The behaviors
learn for the first time that a particular challeng- exhibited by the client are described in an objec-
ing behavior can earn him/her access to preferred tive manner and can support the clinical judg-
items or activities. ment of the clinician in his/her determination or
Overall, no measure should be considered in ruling out of a diagnosis. Often, the behaviors
isolation for the purpose of diagnosis or deter- described in the behavioral observation section
mining eligibility for services. In addition, mea- will be referenced in subsequent areas of the
sures should be evaluated and interpreted against report, including the summary and diagnostic
one another in the evaluation process. A care- section, in which in vivo observations in combi-
giver report should be evaluated against the cli- nation with parent interview and behavioral
nician’s direct observation and subsequent questionnaires play a large role in supporting
findings. It is clinical judgment that incorpo- diagnostic criteria.
rates the individual modalities of testing
together and produces a cohesive evaluation. Observations to be Considered
Clinical opinion is invaluable in the diagnosis of • Effort
ASD and functional assessment of challenging • Basic sustained attention
behavior and cannot be substituted, only • Cooperation
strengthened, with carefully considered and • Speech—volume, intonation, articulation,
administered measures of development, cogni- rhythm
tion, language, and executive functioning; diag- • Frustration tolerance
nostic observations and structured interviews; • Compliance
surveys, questionnaires, and inventories related • Rapport
to social skills, behavioral, emotional, and adap- • Handedness, pencil grip
tive functioning; review of psychological and • Restless motor behaviors
medical records; functional assessment tools; • Balance/Gait
and detailed histories obtained by caregivers and • Vision and hearing
teachers. Furthermore, a clinician has the ability
22 J. Tarbox et al.

Observations Prevalent in ASD daily life. It is of course not possible to determine


• Speech (e.g., one-word labels, 3–4 word a priori all of the variables that may enhance or
phrases, fluent speech), topic flexibility worsen client performance under assessment
• Eye contact conditions. Rather, it is important for clinicians
• Distractibility to remain apprised of the potential for such prob-
• Toleration of task demands lems and so supplement structured testing condi-
• Task initiation tions with thorough caregiver interview and
• Perseveration/Rigidity observations in the natural environment.
• Repetitive and stereotyped behaviors
• Self-monitoring/Self-correcting
• Transitioning between tasks Progression Through Assessment
Process

Each assessor and each clinic possesses tradi-


Assessment Results Versus Actual tions and preferences regarding how to progress
Everyday Functioning through the entire assessment process. Each pur-
pose for assessment will also largely dictate how
When completing any assessment, be it diagnos- the clinician progresses through the assessment
tic, functional, or otherwise, it is critical to con- process. For example, if the only purpose of
sider that the client may perform different in assessment is to identify a diagnosis, then pri-
structured assessment situations than he/she does marily diagnostic assessments may be adminis-
in the course of his/her everyday life. There are tered, with other areas of functioning done in a
many variables that may result in performance supporting manner. However, if the purpose of
under testing conditions diverging from everyday assessment is to confirm diagnosis and conduct a
performance. First, controlled assessment envi- comprehensive workup of a child’s overall devel-
ronments generally have less distractions and opment and functioning, for example, then a
extraneous stimuli than real life. Particularly much larger battery of assessments will likely be
since many individuals with ASD have difficulty done. Finally, if the purpose of assessment is only
with complex, overstimulating environments, the to identify the function of a single challenging
quiet assessment environment may produce per- behavior, then the process will be much narrower
formance that is higher than that which actually and focus almost exclusively on functional
occurs in real life. However, the demands of test- assessments.
taking situations may have the opposite effect for Regardless of the purpose of assessment,
some individuals with ASD. For example, some some clinicians resort immediately to effortful,
individuals may be frightened by novel environ- time-consuming, costly assessment batteries,
ments or novel clinicians. In addition, individuals while others may attempt to use only low-cost,
with ASD who have difficulty with language may rapid methods. We suggest a third route, that is,
score lower on a test that is highly verbal than progressing gradually from less to more intru-
what their true functioning ability may be in real sive, depending on the purpose of assessment and
life, where ample, nonvocal cues and feedback on the ongoing data produced during the assess-
may be available. In the case of EFAs, if the ment process. For example, when diagnosing a
assessment is conducted in a novel, empty room, child with autism, an experienced diagnostician
with an unfamiliar clinician and no parents pres- may find that, in some cases, merely conducting
ent, novel challenging behaviors may be evoked, a thorough interview and completing one or two
such as those aimed at escaping the room. Such indirect diagnostic tools with the child’s parent,
behaviors may appear severe to the clinician but plus a brief in-person observation of the client in the
may not actually represent the real challenging clinician’s office, may suffice to confirm an ASD
behaviors displayed by the individual in their diagnosis and rule out other possible diagnoses.
2 Types of Assessment 23

However, in cases where these low-cost, rapid tional assessment to be done afterward, in order
approaches do not yield conclusive results, some- to produce interpretable results.
thing requiring more time and expertise, such as Although ample research has demonstrated
an ADOS, may be needed. Finally, conducting a the utility of EFAs, the current reality is that very
lengthy and costly structured interview, such as few clinicians are actually trained to conduct
the ADI-R, may be needed in cases that are not them. Therefore, the vast majority of behavior
entirely clear. All of these options may well need analysts, psychologists, and school districts sim-
to be supplemented by observing the client in ply are not equipped to conduct EFAs and there-
their natural environment. fore conduct only indirect and descriptive
Taking a least-to-most intrusive and costly functional assessments. In these cases, the choice
approach is also common in functional assess- of indirect and descriptive is not based on a ratio-
ment of challenging behavior. In relatively nal clinical decision making process, it is the
straightforward and less severe cases, a simple only choice available.
interview with caregivers and completion of an
indirect assessment, such as the QABF, might
suffice to produce a clear hypothesis regarding Troubleshooting
behavioral function. If this is the case, the clini-
cian might be wise to move directly to a rapid No matter how experienced the clinician or how
treatment analysis to confirm the results of the well-validated the assessment tools are, mistakes
assessment. In cases where indirect assessments can happen and, even in the absence of any mis-
produce inconclusive or conflicting results and/or takes, some amount of inconsistency between
in cases where the behavior is of sufficient sever- and within various assessments is possible.
ity, progressing to a descriptive functional assess- Therefore, when interpreting the results of assess-
ment is often warranted. Furthermore, when a ments, it is often necessary for clinicians to
descriptive assessment does not produce conclu- engage in various troubleshooting strategies. One
sive results, progressing to an EFA may be war- important option is to reinitiate contact with care-
ranted. Another occasion upon which an EFA givers to ask for additional follow-up information
may be warranted is when treatments have been that may serve to clarify information and/or help
attempted on the basis of the results of indirect or to resolve inconsistencies in how the assessment
descriptive functional assessments and the treat- data can be interpreted. In addition to following
ments have failed, suggesting that the results of up with caregivers, conducting additional natu-
those assessments may have been incorrect or ralistic observations is always a good option. In
incomplete. Interestingly, although EFAs are reality, traveling to the client’s natural environment
generally considered more labor intensive and to observe again may be prohibitively expensive
time-consuming than descriptive assessments, or time-consuming but there is often no substitute
that is not always the case. For example, Tarbox for the wealth of information that direct observa-
et al. (2009) spent approximately the same tion in the natural environment can provide.
amount of time on ABC and EFA assessments Finally, no matter how well trained and experi-
and found that EFAs produced interpretable enced a clinician may be, he/she will someday
results in 100 % of cases, whereas ABC assess- encounter a client for whom the clinician does
ments produced interpretable results in only not possess all the needed skills to complete the
57 % of cases. Therefore, at least in that study, assessment satisfactorily. In cases such as these,
EFAs were arguably more efficient and less the clinician has an ethical responsibility to either
costly than descriptive assessments because they seek consultation from colleagues or refer the cli-
required about the same amount of time but pro- ent out to another clinician who has a greater
duced conclusive results, whereas almost half of degree of competence in the particular specialty
the descriptive assessments still required addi- the client requires.
24 J. Tarbox et al.

Additional Considerations demands exceeded their personal resources to


cope. Others sought an ASD evaluation in search
While taking a multifaceted approach to ASD for an answer to the challenges confronting them
evaluation (e.g., clinical interview, clinical obser- in various arenas of life that are not better
vation of the child in a natural environment, indi- accounted for by other mental health conditions
rect questionnaires, standardized testing, such as depression, anxiety, attention-deficit
reviewing of previous test records) is preferred hyperactivity disorder, and so on.
and may be regarded as “best practice,” the clini- In order to qualify for an ASD diagnosis per
cian ought to be thoughtful about how many and the Diagnostic and Statistical Manual of Mental
which direct measures to administer. When previ- Disorders (DSM-5), one of the criteria is that
ous test records are available, the clinician is “symptoms must be present in the early develop-
encouraged to minimally review the types of tests mental period.” For clinicians, establishing that
that the child was given in order to safeguard the symptoms were present in the early develop-
against practice effect and, in contrast, may con- mental period for an adult client can be a highly
sider the entire report at the clinician’s discretion. challenging task. Establishing a developmental
For example, it is commonly agreed upon that history relies upon gathering information from
most IQ tests should not be readministered within the client’s caregivers. Instruments such as the
a year because of practice effects. However, IQ ADI-R can be excellent tools for such use and are
scores are often used for diagnostic and treatment widely used by clinicians. However, such an
intervention purposes, in which case, the clinician interview with caregivers may be unobtainable
must exercise caution when choosing when to due to practical reasons such as the caregiver not
readminister such tests. Some authors suggest being available to participate in the evaluation
using a different intelligence test and then com- either by choice or by circumstance (e.g., care-
pare the results from both tests (Prifitera, Weiss, givers are deceased).
& Saklofske, 1998). Some clinicians prefer to
approach the evaluation with a blank state, thus,
form their own hypothesis about the client’s pre- Other Considerations That Dictate
senting concerns. Nonetheless, being fully aware Types of Assessments
of all assessment that has been done in the past
allows the clinician to fully appreciate the client’s ASD evaluation is a multifaceted process and
diagnostic profile and would typically help there are many additional factors that may affect
enhance the diagnostic formulation. the assessment process. Ultimately, it is the clini-
cian’s responsibility to select the appropriate mea-
sures for the client while being cognizant of the
Evaluating Adults client’s culture, language, mobility, education,
with Suspected ASD and so on. Funding source is another factor that
may influence the type of test the clinician
Due to increased public awareness of ASD within employs. In an ideal world, the choice of assess-
the past decade, more adult clients are self- ments would be dictated solely by what is deemed
referred to clinicians for an evaluation of best clinical practices. In the real world, third-
ASD. These clients typically present with a com- party funding agencies may require certain assess-
plex clinical picture. They may seek a differential ments to determine eligibility for initial or
diagnosis of higher-functioning autism or they continued treatment funding, even when those
may experience social and behavioral difficulties assessments are not the best options clinically. In
due to other mental health conditions. Many of other cases, third-party funding agencies may
them are reportedly higher functioning and were provide insufficient funding to cover a sufficiently
able to navigate academic, vocational, and social comprehensive battery of assessments. In such
demands in their primary years until those cases, the clinician is left with the unfortunate
2 Types of Assessment 25

choice of doing what they deem to be clinically psychometric properties, as well as being useful
necessary and not billing for the cost overruns, or in clinical practice. Overall, it is generally the
attempting to conduct a clinically adequate evalu- case that less structured, indirect assessments
ation in a shorter-than-ideal amount of time. tend to be less costly, more efficient, and more
flexible, but less valid and reliable. More struc-
tured, “gold standard” assessments tend to be
Technological Advances more reliable, more valid, but require a large
amount of training and experience that most cli-
The future of psychological assessment in gen- nicians simply do not possess. In the end, the
eral and ASD evaluation more specifically is strengths and limitations of each type of assess-
going to evolve in parallel with advances in tech- ment must be weighed against one another when
nology such as computerized assessment and creating an individualized, customized evalua-
long-distance service delivery through telehealth. tion for each individual with ASD, and it is
Computerized assessment is predicted to help important to keep in mind that no amount of stan-
increase test administration efficiency. For exam- dardization or professional consensus will ever
ple, computer programs may be able to generate supplant the critical role of clinical judgment in
specific test items utilizing a complex decision the assessment process.
rule, thus, eliminating unnecessary items
(Lichtenberger, 2006). It will also help immedi-
ately score each item, hence enabling the clini- References
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Purposes of Assessment
3
Lauren Gardner, Karyn Erkfritz-Gay, Jonathon
M. Campbell, Tera Bradley, and Laura Murphy

The purpose of this chapter is to provide information in social communication and restricted and repetitive
to individuals involved in the assessment of patterns of behavior. Although these symptoms
autism spectrum disorder (ASD). The assessment are common among individuals diagnosed with
process can serve a variety of purposes, and there ASD, the presentation of symptoms and progno-
are a number of important concepts involved in ses are diverse, varying from one individual to the
the assessment of ASD. These concepts include next. The behavioral symptoms characteristic of
the surveillance of symptoms to identify children ASD typically becomes apparent between ages 1
who may be at risk, screening when concerns are and 2 (Courchesne et al., 2007; Kozlowski,
raised in the surveillance process, comprehensive Matson, Horovitz, Worley, & Neal, 2011), and it
diagnostic evaluations for ASD, determination of is broadly agreed that developmental deficits in
co-occurring disorders, and identifying areas for communication and social behavior in children
intervention. This chapter will provide an over- with ASD can be observed towards the second
view of each of these constructs, which will pro- year of life, if not sooner (McConnell, 2002;
vide discussion of specific strategies and Webster, Feiler, & Webster, 2003; Woods &
implications for enhancing service and care to Wetherby, 2003). Deficits in nonverbal social
children with ASD and their families. communication, lack of social or emotional reci-
procity, and speech/language delays are the most
prevalent diagnostic characteristics for children
Autism Spectrum Disorders under 3 years of age (Stone et al., 1999). The cur-
rent prevalence rates from the Center for Disease
Autism spectrum disorder is a neurodevelopmen- Control and Prevention estimate that one in every
tal disorder that affects individuals across their 68 eight-year-old children is diagnosed with
lifespan. The core symptoms of ASD are often ASD, with rates of diagnosis approximately four
present in early development and include deficits to five times higher in males than females. The
median age of earliest diagnosis is 4 years,
5 months of age, which does not differ by sex or
L. Gardner (*) • T. Bradley • L. Murphy race/ethnicity (Autism and Developmental
University of Tennessee Health Science Center,
Memphis, TN, USA Disabilities Monitoring Network Surveillance
e-mail: lbenner@uthsc.edu Year 2008 Principal Investigators, 2012).
K. Erkfritz-Gay Cognitive levels vary widely among children with
KishHealth System, DeKalb, IL, USA ASD and have been identified as an early predic-
J. M. Campbell tor of later outcomes (Ben Itzchak & Zachor,
University of Kentucky, Lexington, KY, USA 2007). There are currently no definitive medical

© Springer International Publishing Switzerland 2016 27


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_3
28 L. Gardner et al.

tests to diagnose ASD, and diagnostic criteria rely associated with ASD. Common early signs and
on the presence of certain behaviors and the symptoms of ASD that are well established in
absence of others. The cause of ASD remains preschool-aged children include lack of social
unknown. Despite the fact that ASD has a high gaze, delayed motor imitation, deficits in joint
heritability component, science has yet to under- attention skills, atypical object use, and the pres-
stand the complexity of the genetics involved. ence of repetitive behaviors (McConnell, 2002;
Stone, Coonrod, & Ousley, 2000; Webster et al.,
2003; Woods & Wetherby, 2003). However, one
Surveillance barrier to effectively identifying these deficits in
social communication is the lack of established
In the United States, the current prevalence of developmental milestones related to these skills,
children receiving a diagnosis of a developmental which further underscores the importance for
disability (e.g., attention-deficit/hyperactivity healthcare providers to be knowledgeable of
disorder, ASD, cerebral palsy, learning disability, these early ASD symptoms (Ibanez, Stone, &
intellectual disability) is one in six, which sug- Coonrod, 2014). Further, another challenge in the
gests that developmental disabilities are rela- early identification of skill deficits is that some
tively common (Boyle et al. 2011). While there is characteristics of ASD require an absence of
some debate that the rising prevalence of ASD is behaviors expected for a child’s developmental
due to recent changes in diagnostic criterion level, which can be hard to determine. While a
rather than an actual increase in prevalence child may display social communication behav-
(Hansen, Schendel, & Parner, 2015), it is clear iors, he or she may not perform them with the
that the development of all children should be same consistency or ease that would be expected
monitored, with screening and evaluation occur- based on their developmental level (Ibanez et al.,
ring as soon as developmental delays are sus- 2014). Early symptoms of ASD will be discussed
pected. Although children can be diagnosed with in more detail later in this chapter; in general,
ASD as early as 2 years old, most children do not healthcare providers need to be well informed
receive a diagnosis of ASD until almost two and about typical and atypical developmental pro-
a half years later (Autism and Developmental gression in order to be effective in conducting
Disabilities Monitoring Network Surveillance developmental surveillance.
Year 2010 Principal Investigators, 2014). As According to Johnson and Myers (2007), the
such, surveillance, “the ongoing process of iden- medical home represents an important setting for
tifying children who may be at risk of develop- surveillance and screening for ASD and other
mental delays” (Bright Futures Steering developmental disorders. More specifically, a
Committee, & Medical Home Initiatives for discussion of developmental concerns is a neces-
Children With Special Needs Project Advisory sary component of all well-child appointments
Committee, 2006, p. 406) is an essential compo- until a child is 5 years old (Bright Futures
nent in the care of all young children. Possible Steering Committee, & Medical Home Initiatives
desired outcomes of developmental surveillance for Children With Special Needs Project Advisory
include triaging referrals based on data collected, Committee, 2006). Taken together, developmental
providing families with necessary education to surveillance should encompass both concerns
support on-target development, and determining expressed by parents and healthcare profession-
the effectiveness of surveillance efforts through als in determining if a child is at risk for develop-
early intervention and treatment (Bright Futures mental delays. The following components should
Steering Committee and Medical Home be encompassed as part of general developmental
Initiatives for Children with Special Needs surveillance: “eliciting and attending to the par-
Project Advisory Committee). ents’ concerns; maintaining a developmental his-
In order to conduct developmental surveil- tory; making accurate and informed observations
lance, it is important to have an appropriate fund of child; identifying the presence for risk and
of knowledge related to early symptoms protective factors; and documenting the process
3 Purposes of Assessment 29

and findings” (Johnson & Myers, 2007, p. 1195). tion regarding risk factors, they suggest asking
In obtaining information regarding the child’s parents if there is a family history of ASD—in
progress from parents, healthcare professionals particular, if the child has a sibling diagnosed
are encouraged to ask about the child’s develop- with an ASD, which increases the risk tenfold for
ment, learning, and behavior. Glascoe (2000) the child of having symptoms of ASD. Further,
indicted that using parents as informants is an healthcare providers are encouraged to ask open-
efficient, effective, and accurate way to aid in ended questions regarding the child’s behavior
comprehensive developmental surveillance. and development including age-specific devel-
Further, as part of maintaining a developmental opmental milestone questions related to early
history, healthcare providers must ask specific symptoms of ASD (e.g., verbal and nonverbal
questions regarding age-appropriate milestones communication, reciprocal social interaction, or
to determine if a child’s development is delayed pretend play skills; Johnson & Myers, 2007). In
or advanced or presents with any regression in particular, the American Academy of Neurology
development (Bright Futures Steering Committee (2000) has developed practice parameters regard-
and Medical Home Initiatives for Children with ing the screening and diagnosis of ASD. As such,
Special Needs Project Advisory Committee). if a parent or healthcare provider endorse or
During preventative well-child appointments, observe any of the following, the child should be
healthcare providers should conduct a thorough referred for an immediate ASD evaluation:“no
examination of both physical health and develop- babbling by 12 months; gesturing (e.g., pointing,
mental progression (Bright Futures Steering waving bye-bye) by 12 months; single words by
Committee and Medical Home Initiatives for 16 months; two-word spontaneous (not just echo-
Children with Special Needs Project Advisory lalic) phrases by 24 months; loss of any language
Committee, 2006), which also gives the opportu- or social skills at any age.” (American Academy
nity for the provider to directly observe the of Neurology, p. 471)During the context of the
child’s progress (e.g., engaging the child in con- well-child visit, the healthcare provider may
versation could yield information regarding interact and directly assess the child’s attainment
social interaction skills and language develop- of specific developmental skills. For example, at
ment). Another key component of developmental a 12-month visit, the healthcare provider could
monitoring is determining the presence of both observe the child’s responsiveness to his or her
risk (e.g., environmental, genetic, demographic) name being called (Johnson & Myers, 2007).
and protective factors (e.g., supportive family, In a typically developing child, the healthcare
opportunities to interact with same-age peers; provider would expect the child to orient to him
Bright Futures Steering Committee and Medical or her and engage in eye contact. However, in a
Home Initiatives for Children with Special Needs child presenting with symptoms of ASD, he or
Project Advisory Committee). Finally, healthcare she may appear oblivious to the healthcare pro-
providers must ensure that surveillance activities, vider’s statement (e.g., does not look at health-
along with any specific plans completed or care provider or reference his or her caregiver
expected (e.g., scheduling an earlier follow-up for guidance as to how to respond) even with
appointment, referral to early childhood special- repeated attempts by the healthcare provider to
ist), are carefully documented in the child’s med- obtain the child’s attention through calling his
ical chart. or her name. Accordingly, information observed
and obtained by the healthcare provider, as well
as concerns shared by caregivers in the context of
Surveillance for ASD this preventative well-child visit, should drive the
follow-up plan of care developed. Developmental
Within the framework of general developmental surveillance differs from developmental screen-
surveillance, Johnson and Myers (2007) high- ing in that surveillance is an ongoing process of
light additional components specific to ASD. monitoring development, while screening may
Specifically, in obtaining additional informa- result as a consequence of surveillance.
30 L. Gardner et al.

Screening persons with minimal levels of expertise (Robins,


2008). Level II screeners are designed to be used
Screening is defined as “the prospective identifi- with groups of individuals who have already
cation of unrecognized disorder by the applica- come to the attention of professionals through
tion of specific tests or examinations” (Baird referral by other means, such as clinical concern
et al., 2001, p. 468). The basic process of screen- or results from a Level I screener. The goal of the
ing involves the administration of a screening Level II screener is to assist in differentiating
instrument or procedure to a large group of indi- individuals with ASD from larger groups of indi-
viduals, which is subsequently followed by a viduals with other disorders. A Level II screener
“gold standard” instrument or diagnostic method is utilized typically within more specialized prac-
when the screen is positive. Screening is built on tice settings, such as developmental pediatrician
the notion that earlier identification and diagnosis offices, Child Find screening programs, or diag-
of previously undetected problems will result in nostic evaluation centers.
improved outcomes for individuals with various
disorders and disabilities. Early screening for
ASD has garnered considerable attention, due to Guidelines for Evaluating Screeners
consensus that children with ASD identified and
enrolled in early intervention programming Ideal screening instruments are those that are
evince improved outcomes. The importance of brief, inexpensive, and utilized by lay respon-
screening for ASD has been emphasized in dents and demonstrate strong psychometric prop-
guidelines published by the American Academy erties. As with any assessment procedure,
of Pediatrics (AAP), which recommend ASD screening measures should demonstrate evidence
screening for 18- and 24-month-olds (Johnson & of reliability and validity. Screening measures
Myers, 2007). should demonstrate internal consistency reliabil-
The overall goal of screening is to identify ity and temporal stability reliability; that is,
individuals from otherwise healthy populations screeners should feature items that share some
who may be deemed at risk for the presence of relationship with one another and produce simi-
disorder. It is important to understand that screen- lar results over test administrations.
ers do not yield diagnostic decisions, but rather Psychometric validation of screeners typically
indicate whether an individual may be at risk for takes the form of criterion-related (or predictive)
a disorder. The general goal of screening is to be validity with the screener serving as the predictor
differentiated from case finding, which refers to and the diagnostic outcome the criterion. As such,
the detection of disorder in individuals who are the general approach for evaluating the utility of a
diagnosed with another disorder. For example, screener is often undertaken within a “basic epi-
one may engage in case-finding activities to demiologic screening model” (Derogatis & Lynn,
ascertain the degree of depression within a sam- 1999, p. 43). As shown in Table 3.1, the general
ple of individuals with intellectual disability. model crosses the result of the screening measure,
Screeners are also characterized generally as either positive or negative, with the results of a
Level I or Level II depending on the scope of use “gold standard” diagnostic measure, either posi-
and purpose of the screener. Level I screeners are tive or negative. The crossing of test results yields
measures designed for use within the general a two by two matrix that sorts cases into separate
population and serve as a first screening point. cells corresponding to correct and incorrect
Level I screeners for ASD are designed for use screening results. A positive screening result con-
with all children within a defined population or firmed by accurate identification of disorder is a
particular service setting, such as pediatric pri- true positive; a negative screening result con-
mary care. As such, Level I screeners should be firmed by accurate exclusion of disorder is a true
designed to be convenient to use, inexpensive, negative. In contrast, a positive screening result
easy to administer and score, and completed by that is disconfirmed via diagnostic evaluation is
3 Purposes of Assessment 31

Table 3.1 Outcomes for screening decisions and diag- NPV is calculated by the number of true negatives
nostic decisions
divided by the total number of individuals screen-
Diagnostic decision ing negative. Various guidelines exist in the
Positive Negative screening literature regarding what constitutes
Screening Positive True False-positive acceptable levels of overall test accuracy, sensi-
result positive (a) (Type I
error) (b)
tivity, specificity, PPV, and NPV. For example,
Negative False-negative True Carran and Scott (1992) suggest that sensitivity,
(Type II negative (d) specificity, and hit rate values should minimally
error) (c) meet or exceed 0.80.
Note. Sensitivity = a/(a + c); specificity = d/(b + d); positive
predictive value = a/(a + b); negative predictive value = d/
(c + d); false-negative rate = c/(a + c); false-positive
rate = b/(b + d)
Screening for ASD

To date, no universal biological (e.g., genetic) or


termed a false-positive; a negative screening result behavioral (e.g., response to name) marker for
that is followed by positive diagnostic test result is ASD has been identified that meets all standards
termed a false-negative. of sensitivity, specificity, PPV, and NPV (Barton,
The basic epidemiologic screening model Dumont-Mathieu, & Fein, 2012). Until a uni-
yields statistical information about various versal marker has been identified for ASD, a
aspects of the accuracy (i.e., validity) of the combination of surveillance and screening prac-
screener (see Table 3.1). A screener’s overall tices is recommended for detecting ASD in the
accuracy or “hit rate” is the proportion of all chil- general population. For children with ASD, par-
dren correctly identified by the screener and cal- ents often identify first concerns about language
culated by summing true positives plus true development within the first 2 years of life.
negatives and dividing by the total number of Language delay, however, is not specific to
individuals screened. A screener’s sensitivity ASD; early social-communicative behaviors
refers to the proportion of individuals correctly consistently predict ASD diagnosis in young
detected as having the disorder within a sample children. For example, an early indicator of
and is calculated by dividing the number of true ASD includes lack of social responsiveness
positives by the total number of individuals diag- (e.g., child does not respond when name is
nosed in a sample. A screener’s specificity refers called). Indeed, early in development, many
to the proportion of individuals correctly parents question whether their child may be
excluded as not having the disorder within a sam- deaf or have a hearing impairment. Other social-
ple and is calculated by dividing the number of communicative behaviors predictive of ASD
true negatives by the total number of individuals diagnosis early in development (i.e., by around
without disorder in a sample. 18 months) are lack of response to name, lack of
Two additional pieces of statistical informa- protodeclarative pointing (i.e., pointing out
tion yielded in the basic screening evaluation objects for the purpose of sharing interest with
model correspond to the value of screening posi- others), no pretend play, and poor response to
tive or negative. A screener’s positive predictive joint attention (e.g., following another’s gaze to
value (PPV) refers to the proportion of individu- an object or person of interest). Recommended
als who screen positive who are identified with ASD screeners are those that sample such
the disorder; PPV is calculated by the number of social-communicative behaviors and play, such
true positives divided by the total number of indi- as the Modified Checklist for Autism in
viduals identified as at risk by the screener. A Toddlers-Revised (MCHAT-R/F; Robins, Fein,
screener’s negative predictive value (NPV) refers & Barton, 2009). The MCHAT-R/F is designed
to the proportion of individuals who screen nega- for use with 16–30-month-olds and recom-
tive who are excluded from having the disorder; mended for ASD screening in primary care.
32 L. Gardner et al.

Chapter 5 of the present volume provides a Examples of social communication deficits that
review of various methods and strategies for may be present include difficulties in social-
screening for ASD using both Level I and Level emotional reciprocity, impaired nonverbal com-
II screeners. Several general points warrant inclu- munication skills, and difficulties building and
sion in this chapter, however. First, ASD screen- maintaining relationships with others. Restricted
ers may be incorporated in various service and repetitive behaviors (RRBs) that may be
delivery settings, such as primary care and pre- observed in individuals who meet criteria for an
schools. Second, despite repeated calls for ASD diagnosis include stereotyped repetitive
screening within primary care settings, many movements, object use, or speech; rigidity;
pediatricians do not routinely screen for ASD highly fixated interests; and over or under reac-
according to the recommendations published by tion to sensory input. Although these core symp-
the AAP (e.g., Arunyanart et al., 2012). As such, toms are common behaviors among individuals
ASD screening efforts will likely need to extend diagnosed with ASD, as a spectrum disorder, the
to nontraditional settings and be administered by presentation of symptoms are diverse. Prognoses
individuals outside of the traditional parameters vary from one child to the next based on the
of healthcare, such as individuals working in day- severity of the symptoms displayed. The best
care settings. Third, although the focus of this indicators of prognosis include cognitive ability
section of the chapter is on young children, older (e.g., IQ), joint attention skills by age 4, and
children who show age-appropriate language and functional spoken language by age 5 (Johnson &
cognitive development accompanied by mild Myers, 2007).
ASD symptomatology may not come to clinical
attention to service providers early in develop-
ment. Therefore, surveillance and screening Early Behavioral Features of ASD
efforts are also appropriate for children in kinder-
garten and elementary school. Several measures It is widely accepted that early diagnosis of ASD
exist for screening older individuals, such as the is imperative given the considerable effect early
Social Responsiveness Scale, Second Edition intervention has on later outcomes. The behav-
(Constantino & Gruber, 2012). Although the field ioral symptoms characteristic of ASD appears
has yet to identify a universally appropriate during the early developmental period, typically
screening measure, sound measures and methods before age 3 (APA, 2013). Research has indicated
exist to identify risk of ASD for younger and that the core impairments associated with ASD
older children. are present and identifiable during the second
year of life (Pierce, Carter, Weinfield, &
Desmond, 2011), if not sooner (Kozlowski et al.,
Diagnosis 2011). From an early age, children with ASD
often exhibit developmental delays in orienting
When concerns are raised in the surveillance and to social stimuli, play skills, motor imitation, and
screening process, a comprehensive diagnostic joint attention skills (McConnell, 2002; Stone
evaluation should be conducted. A diagnosis of et al., 2000; Webster et al., 2003; Woods &
ASD is made based on the presence of certain Wetherby, 2003). Most commonly, parents of
behaviors and the absence of others. The new children later diagnosed with ASD identified
diagnostic criteria for ASD, as presented in the concerns with speech/language development,
Diagnostic and Statistical Manual of Mental social responses, and medical concerns within
Disorders, Fifth Edition (DSM-5; APA, 2013), the first 2 years of their child’s development (De
requires that during the early developmental Giacomo & Fombonne, 1998). A study by
period, a child demonstrates impairments in Kozlowski et al. (2011) found that delays in com-
social communication and interaction and munication are not necessarily ASD specific,
restricted and repetitive patterns of behaviors. although parents of children later diagnosed with
3 Purposes of Assessment 33

ASD noted these concerns significantly earlier in (i.e., impaired social interaction, impaired
their child’s development than parents of children communication, and restricted repetitive and ste-
with non-ASD-related developmental delays. reotyped behaviors). DSM-5 reorganizes the
Further, there was a significant positive correla- social communication/interaction domain by
tion between the age at which parents first noted combining the previous versions social interac-
communication delays and age of evaluation. tion and communication domains and omitting
Thus, parental knowledge of delayed develop- the first DSM-IV-TR criteria for autistic disorder,
mental milestones related to communication which required a delay/absence of speech accom-
resulted in their children receiving evaluations at panied by failure to compensate. In DSM-5, a
younger ages. child’s failure to speak in itself no longer serves
In addition to the social and communication as a diagnostic criteria for ASD. In comparison
impairments associated with ASD, the impor- with previous diagnostic criteria for Asperger’s
tance of RRBs in facilitating early diagnosis has disorder, the presence or absence of language
been emphasized as well. More specifically, Kim delays no longer preclude diagnosis of ASD in
and Lord (2010) demonstrated diagnostic differ- any way. Although understanding the role of
ences in the prevalence and severity of RRBs delayed or disordered language is important in
among young children with ASD, developmental the interpretation of an individual’s specific fea-
delays, or typical development. Utilizing semi- tures of ASD, language delays in themselves are
structured observation methods to assess for not included in the diagnostic criteria of
RRBs and social and communication deficits has ASD. Another new addition to the diagnosis of
been shown to increase the likelihood of a stable ASD is the inclusion of sensory symptoms in the
ASD diagnosis over time (Kim & Lord, 2010). list of illustrative examples provided for repeti-
tive behaviors.
The DSM-5 also includes specifiers for asso-
Diagnostic Criteria for ASD ciated features of ASD by individual. This pro-
vides information regarding other disorders that
The new diagnostic criteria for ASD provided may also be present (e.g., intellectual impair-
within the DSM-5 differ significantly from the ment, language impairment) and allows for the
previous versions of the manual. Likely, the diagnosis of ASD in individuals with genetic
most significant change to DSM-5 is the elimi- conditions (e.g., Rett syndrome, fragile X syn-
nation of the separate diagnostic categories for drome) or other neurodevelopmental, mental, or
the subtypes of pervasive developmental disor- behavioral disorders. Thus, the clinician does not
ders (e.g., autistic disorder, Rett’s disorder, have to choose between a genetic descriptor or a
childhood disintegrative disorder, Asperger’s behavioral diagnosis, but can apply both when
disorder, and pervasive developmental disorder, appropriate.
not otherwise specified (including atypical The changes to the diagnostic criteria pre-
autism)). Instead, within the neurodevelopmen- sented in DSM-5 are not without controversy.
tal disorders, the DSM-5 provides a single diag- Initial research has demonstrated that the DSM-5
nostic category of ASD. diagnostic criterion for ASD results in increased
When comparing the DSM-5 diagnostic crite- specificity when compared with DSM-IV-TR,
ria for ASD to the DSM-IV-TR (APA, 2000) which may reduce the number of children who
diagnostic criteria for autistic disorder, there is a are diagnosed as having ASD when they do not
notable change to the required age of onset for (Frazier et al., 2012). However, there has also
the disorder. Previously, a child had to display been concern that the new criteria may signifi-
symptoms prior to age 3; DSM-5 requires symp- cantly alter the population of individuals diag-
toms be present in the early developmental nosed with ASD moving forward. Research has
period. Furthermore, the previous diagnostic cri- demonstrated that individuals previously diag-
teria for autistic disorder included three domains nosed with PDD-NOS and Asperger’s disorder
34 L. Gardner et al.

are less likely to exceed the diagnostic threshold the core symptoms associated with ASD, or may
required to receive an ASD diagnosis per the demonstrate significant language deficits, but,
DSM-5 criteria (McPartland, Reichow, & few to no RRBs. Currently, there are no treatment
Volkmar, 2012). Other studies have demon- recommendations for SCD. Kim et al. suggests
strated that the prevalence of ASD would that treatment for ASD and SCD should be the
decrease only to the extent that the majority of similar or the same until future research indicates
children who no longer meet the diagnostic cri- otherwise.
teria for ASD would meet criteria for social Although, it is possible to reliably diagnose
(pragmatic) communication disorder (SCD), children with ASD as young as 24 months of age
which is a new diagnosis in the DSM-5. A diag- (Johnson & Myers, 2007), the CDC established
nosis of SCD is appropriate for those individuals Autism and Developmental Disabilities
who demonstrate deficits in the use of verbal and Monitoring (ADDM) Network reported a much
nonverbal communication for social purposes. A later median age (i.e., 4 years, 5 months) for ear-
diagnosis of SCD differs from ASD in that a liest ASD diagnosis. While a diagnosis of ASD
diagnosis of ASD requires symptoms related to may be clear for some, it may be more difficult
social communication and the presence of for other individuals given the presentation of
restricted, repetitive patterns of behavior, inter- behaviors and/or presence of comorbid disorders.
ests, or activities. Before diagnosing SCD, ASD ASD is a spectrum disorder, and, as such, it is
must first be ruled out. associated with a broad range of symptoms that
Kim et al. (2014) compared clinical diagnoses can affect individuals to varying degrees in sever-
made with DSM-IV-TR criteria for subtypes of ity, with the presentation of symptoms potentially
autistic disorder, Asperger’s disorder, and perva- changing over time (Lord, Corsello, &
sive developmental disorder not otherwise speci- Grzadzinski, 2014). Further, barriers that fami-
fied (PDD-NOS), to that of DSM-5 diagnostic lies face when seeking a diagnostic evaluation for
criteria for ASD and SCD. Overall, results indi- ASD may include a lack of access to highly qual-
cated that 83 % of the children who received a ified professionals, increased levels of parental
diagnosis of autistic disorder using DSM-IV cri- stress and anxiety, and financial barriers (Matson
teria would still receive a diagnosis of ASD using & Goldin, 2014).
the new DSM-5 criteria. Specific results by diag- The “gold standard” for a diagnostic evalua-
nostic subtype indicated that, of the children pre- tion of ASD involves the clinical judgment of a
viously diagnosed with autistic disorder, 99 % qualified interdisciplinary team to determine
met criteria for ASD and 1 % met criteria for diagnosis, which includes utilizing empirically—
SCD. Of the children previously diagnosed with sound diagnostic instruments, clinical assess-
Asperger’s disorder, 91 % met criteria for ASD, ment, caregiver report, and behavior observations.
6 % met criteria for SCD, and the other 3 % were Although a diagnosis made by an interdisciplin-
diagnosed with a non-autism spectrum disorder. ary team is the ideal, this is not always feasible
Regarding children previously diagnosed with due to availability in a given location and exten-
PDD-NOS, 71 % met criteria for ASD, 22 % met sive waitlists for such evaluations. Individuals
criteria for SCD, and 7 % were diagnosed with with expertise in ASD can also conduct evalua-
another non-autism spectrum disorder. Thus, the tions independently. The core features of an
large majority of children previously diagnosed evidence-based assessment for ASD in children
with autistic disorder and Asperger’s disorder and adolescents include caregiver reporting on
using the DSM-IV-TR autism subtypes would interviews and questionnaires, autism-specific
still be diagnosed with ASD using the DSM-5 diagnostic tools and observation instruments,
criteria. Those children who previously had standardized assessment of intellectual function-
received a diagnosis of PDD-NOS are more ing, speech/language assessment, and adaptive
likely to receive the new diagnosis of SCD, as behavior assessment (Ozonoff, Goodlin-Jones, &
these children may not demonstrate high levels of Solomon, 2005).
3 Purposes of Assessment 35

ASD-Specific Diagnostic Tools depth review of these diagnostic measures is


and Observation Measures beyond the scope of this chapter, a brief descrip-
tion of the Autism Diagnostic Observation
The use of accurate, reliable, and valid diagnostic Schedule, Second Edition (ADOS-2; Lord et al.,
instruments is an essential part of the assessment 2012) and the ADI-R (Le Couteur et al., 2003) is
process to identify and diagnose ASD. ASD- provided here.
specific assessment measures differ in the degree
to which they emphasize the presence of observ- Autism Diagnostic Observation Schedule, Second
able behavioral abnormalities and lack of typical- Edition (ADOS-2: Lord et al., 2012). The
developing features (Lord et al., 2014). When ADOS-2 is a play-based assessment that incorpo-
diagnosing an individual with ASD, quantifying rates standardized social interactions and activi-
the presentation of social communication and ties that enable examiners to observe behaviors
RRB symptoms is important to determine the that are considered to be integral to the diagnosis
level of severity and support they may benefit of ASD. The ADOS-2 is a semi-structured stan-
from in each of these respective areas. For dardized assessment that typically takes at least
instance, the DSM-5 allows practitioners to 45 min to administer. The ADOS-2 consists of
delineate between three levels of support (i.e., five different modules; the module chosen is
very substantial support, substantial support, or determined by development and language level
support) for social communication deficits and of the child. This instrument should not be used
RRBs. These designations will hopefully aid in in isolation, but does provide examiners the
the identification of areas of relative strengths opportunity to elicit and directly observe behav-
and weaknesses as they relate to ASD core symp- iors typically associated with ASD. The ADOS-2
tomology and facilitate individualized interven- should be always used in conjunction with devel-
tion planning. opmental history, caregiver report, other stan-
There are a variety of autism scales available dardized testing, and clinical observation to
that clinicians may utilize to aid in the assess- determine a diagnosis of ASD.
ment and diagnosis of ASD (Matson, Nebel-
Schwalm, & Matson, 2007). A systematic review Autism Diagnostic Interview-Revised (ADI-R;
of accuracy, reliability, validity, and utility of Le Couteur et al., 2003). The ADI-R is a semi-
diagnostic tools and assessments conducted by structured interview for caregivers of children
Falkmer, Anderson, Falkmer, and Horlin (2013) and adults. The interview focuses on behaviors
found the Childhood Autism Rating Scales, that align with the three diagnostic domains of
Second Edition (CARS-2; Schopler, Van the DSM-IV-TR ASD diagnosis (e.g., quality of
Bourgondien, Wellman, & Love, 2010), Autism social interaction, language and communication,
Diagnostic Interview-Revised (ADI-R; Le and restricted repetitive and stereotyped behav-
Couteur, Lord, & Rutter, 2003), and Autism iors). The measure typically takes about 90 min
Diagnostic Observation Schedule (ADOS; Lord, or more to administer and includes 94 questions
Rutter, DiLavore, & Risi, 2002) were the three regarding the individual’s current functioning,
instruments that had the strongest evidence base with the exception of certain items that specify
and highest levels of sensitivity and specificity age restrictions for the assessed behavior. For
when diagnosing autism. Although the CARS-2 example, questions that assess group play are
was found to have the overall strongest correct coded for behavior displayed between the ages
classification for ASD diagnosis (0.86), it is a of 4 and 10 years; items that assess reciprocal
measure that is not administered in isolation. As friendships are scored for children who are ages
the CARS-2 is a rating form completed by the 5 and older; and questions related to circum-
clinician, clinical observations, caregiver report- scribed interests are scored only for children
ing, and the child’s performance on other testing ages 3 and above. In addition to asking about
measures also inform ratings. Although an in- current behavior, each question focuses on the
36 L. Gardner et al.

developmental time period between the ages of 4 Disorders that Commonly Co-occur
and 5 years, when these behaviors were likely to with ASD
be the most pronounced.
Falkmer et al. (2013) found that when the Although ASD is a uniquely recognized disorder
ADOS (Lord et al., 2002) and ADI-R (Le Couteur (APA, 2013), it shares characteristics with other
et al., 2003) were used in combination, they neurodevelopmental and psychiatric disorders
yielded the strongest accuracy in classification of that are manifested during the developmental
ASD as compared to using the current “gold stan- years. Further, there are a variety of disorders that
dard” team diagnosis approach. It should be commonly co-occur with a diagnosis of ASD. The
noted that when used independently, the ADOS DSM-5 diagnostic criteria for ASD includes
demonstrated stronger utility for an autistic dis- specifiers for associated features of ASD, allow-
order diagnosis than an ASD diagnosis, and the ing clinicians to provide information regarding
ADI-R provided more accurate classification for other disorders that may also be present (e.g.,
children older than 3 years old. Thus, during the intellectual impairment, language impairment)
assessment process, these instruments were more and allows for the diagnosis of ASD in individu-
effective at identifying the presence of ASD in als with genetic conditions (e.g., Rett syndrome,
those children who were older than 3 years old Fragile X syndrome), or other neurodevelopmen-
and who presented with symptomology more tal, mental, or behavioral disorders. Thus, differ-
indicative of DSM-IV-TR’s diagnostic subcate- ential diagnosis should include assessment for
gory of autistic disorder (APA, 2000), a category commonly occurring comorbid diagnoses such as
distinction that is no longer made given the diag- intellectual disability (ID), language disorders,
nostic criteria in DSM-5. genetic conditions, and other neurodevelopmen-
Mazefsky, McPartland, Gastgeb, and Minshew tal or behavioral disorders.
(2013) conducted an analysis to determine how
well an individual’s performance on the ADI-R
and ADOS predicted a diagnosis of ASD using Intellectual Impairment
the DSM-5 criteria. The research sample con-
sisted of a large number of research participants The assessment process should also include an
who were verbally fluent and considered to be appropriate measure of cognitive functioning,
“high functioning” on the autism spectrum (i.e., with an evaluation of both verbal and nonverbal
those who using the previous DSM-IV-TR crite- intelligence. Prior to administering a standard-
ria had received diagnoses of PDD-NOS or ized measure of intelligence with a child who is
Asperger’s disorder). Within this population, suspected of having ASD, the clinician should
results indicated that when using the ADOS first assess the child’s ability to engage in appro-
alone, there were a disproportionately lower priate test taking behaviors (e.g., remain seated,
number of individuals who met diagnostic crite- attend to the test administrator, respond to ver-
ria versus using the ADI-R alone (33 % and bal prompts, etc.), determine reinforcement
83 %, respectively). However, when the ADOS preferences, and assess the individual’s knowl-
and ADI-R were used in combination, 93 % of edge of the basic concepts required by the
the participants in this study met diagnostic crite- selected measure of intelligence (Brassard &
ria for an ASD diagnosis in all categories. These Boehm, 2007). Although the most recent report
results indicate that for those individuals who by the Autism and Developmental Disabilities
demonstrate repetitive behaviors at lower rates of Monitoring (ADDM) Network indicated that
frequency/intensity, additional assessment mea- the majority (62 %) of children identified as
sures will be required to capture the range of having ASD did not have co-occurring intellec-
repetitive behaviors included in the DSM-5 crite- tual disability (ID), ID and ASD do covary at
ria. Thus, Mazefsky et al. supported the use of high rates. The needs of individuals who have
both the ADOS and the ADI-R as part of the both ID and ASD are different than those who
interdisciplinary team’s assessment process. have ID or ASD alone (Ben Itzchak, Lahat,
3 Purposes of Assessment 37

Burgin, & Zachor, 2008; Galli Carminati, an overall Adaptive Behavior Composite score.
Gerber, Baud, & Baud, 2007; Matson & The Vineland-II includes norms for two groups
Shoemaker, 2009). A review by Matson and of individuals with ASD: (a) those who used
Shoemaker (2009) highlighted areas in which fewer than five words functionally each day and
those diagnosed with both ASD and ID demon- (b) those who used more than five words with
strate greater deficits than those with ASD or ID purpose and meaning on a daily basis. Results
alone. Those with ASD and ID showed greater indicated similar patterns of performance across
deficits in adaptive behaviors, social skills, chal- domain and subdomains for both groups of
lenging behaviors, and comorbid mental health individuals with ASD. More specifically, both
disorders. Furthermore, Ben Itzchak et al. found groups demonstrated significant deficits across
that young children with ASD who also had IQs all domains of adaptive skills, with interpersonal
below 70 presented with greater deficits in relationships, play and leisure time, and expres-
social, play, and stereotyped behaviors than sive subdomains representing the areas of most
children at the borderline or average intellectual significant skills deficits.
functioning level. Cognitive deficits represent a
critical factor in prognosis; however, early
intensive treatment has been associated with Language Impairment
improved outcomes for children of varying cog-
nitive levels with ASD (Ben Itzchak et al. 2008; Absent, delayed, or atypical development of lan-
Harris & Handleman, 2000). guage is often one of the first early-recognized signs
A standardized assessment of adaptive func- of ASD. Although language deficits are no longer a
tioning is also important to determine individual criteria for ASD under the DSM-V, the presence or
patterns of strengths and weaknesses and informs absence of an accompanying language impairment
the diagnosis of ASD and ID. The adaptive should be specified when an ASD diagnosis is indi-
behavior profiles of children with ASD evidence cated. As with cognitive and adaptive skill delays,
a wider range in performance by domain (e.g., the language profiles of individuals with ASD are
communication skills, motor skills, daily living highly variable. Among all individuals with ASD,
skills, socialization skills) when compared to approximately 25 % will remain nonverbal (Lord,
typically developing peers, this scatter is even Risi, & Pickles, 2004; Sigman & McGovern, 2005),
more pronounced in children with ASD and while others may develop language skills in line
ID. Children with ASD demonstrate a pattern of with typical peers. Kjelgaard and Tager-Flusberg
adaptive skills that include deficits in socializa- (2001) examined language development in a sample
tion, moderate communication skills, and relative of 89 children previously diagnosed with ASD who
strengths in activities of daily living (Carter et al., were also verbal. Across a battery of commonly
1998). The assessment of adaptive functioning is used language assessments, 76 % demonstrated
important not only for diagnosing or ruling out characteristics of language impairments, while the
ID but also in the determination of individualized remaining children displayed typically developed
educational and vocational planning for chil- language skills. Although it is clear that ASD and
dren with ASD across the range of intellectual language deficits co-occur at high rates, the exact
functioning. Even children with ASD who have nature of their etiology and relationship remains
an IQ within the average range or above gener- unknown. In addition to language impairments,
ally demonstrate adaptive skill deficits, particu- children with ASD may exhibit additional speech
larly in the area of socialization. The Vineland and/or communication difficulties, including repeti-
Adaptive Behavior Scales—Second Edition tive or rigid language (i.e., echolalia), atypical pitch
(Vineland-II; Sparrow, Cicchetti, & Balla, 2005) or tone of voice, narrow conversational interests or
is a semi-structured parent interview that evalu- exceptional abilities, and poor nonverbal communi-
ates adaptive functioning across four domains: cation skills (U.S. Department of Health and Human
communication, daily living skills, socialization, Services, Health, and National Institute on Deafness
and motor skills. This measure also provides and Other Communication Disorders, 2014).
38 L. Gardner et al.

As speech, language, and communication information from a variety of sources, including


difficulties are prevalent among children with consideration of detailed background informa-
ASD, a comprehensive assessment by a qualified tion, self-report and parent report of symptom-
speech-language pathologist is an essential com- atology, and a careful review of DSM-5 criteria.
ponent of an interdisciplinary evaluation. Prior to However, accurately and reliably diagnosing
a speech and language evaluation, however, an comorbid disorders in children and adults with
audiological evaluation should be conducted to ASD can be difficult for a number of reasons. In
ensure that the child’s hearing is within normal some instances, it may remain unclear the extent
limits and to rule out hearing loss as a potential to which certain symptoms warrant a separate
contributor to communication delays. The two diagnosis or if they may be viewed as features of
primary approaches to assessing communication an ASD diagnosis (Matson & Nebel-Schwalm
skills in children with ASD are standardized test- 2007). Furthermore, the social communication
ing and parent report, which tend to provide close impairments that are core features of ASD make
agreement. Psychological testing and behavioral it difficult for the individual with ASD to describe
observation may also inform language assess- symptomology related to psychiatric disorders,
ment, particularly with younger children, as non- which further complicates the identification of
verbal cognitive ability and use of gestures have psychiatric comorbidity (Leyfer et al., 2006). In
been shown to be significant predictors of early addition, although structured instruments that
language development (Luyster, Kadlec, Carter, have been created to assess for behavioral diffi-
& Tager-Flusberg, 2008). culties and comorbid psychiatric disorders in the
general population have been used with individu-
als with ASD, many of these instruments have
Associated Neurodevelopmental, not been tested for reliability or validity with
Mental, or Behavioral Disorders individuals with ASD. Thus, identifying comor-
bid diagnoses for individuals is hampered by a
Accurate and reliable diagnosis of comorbid dis- variety of factors, which include overlapping
orders associated with ASD is an imperative symptomology with other diagnoses, impaired
component of the assessment process given the communication between the clinician and patient,
significant additional clinical impairment these and lacking diagnostic tools.
disorders may present to the individual (Leyfer More recently, instruments specifically
et al., 2006). Commonly, individuals with an designed to assess for symptoms of comorbid
ASD diagnosis present with challenging behav- disorders in individuals with ASD are being
iors (e.g., aggression towards self and others, tan- developed and researched. The Psychopathology
trumming, feeding difficulties, sleep issues, etc.), in Autism Checklist (PAC; Helverschou, Bakken,
difficulties with attention, and older, higher func- & Martinsen, 2009) and the Autism Spectrum
tioning individuals are at increased risk for anxi- Disorders—Comorbidity for Adults (ASD-CA;
ety and mood disorders (Leyfer et al., 2006; van Matson, Terlonge, & Gonzalez, 2006)—are two
Steensel, Bögels, & Perrin, 2011). Determining instruments that are designed for assessing
the presence of additional diagnoses such as comorbidity in adults with ASD. Instruments
obsessive-compulsive disorder, attention-deficit/ assessing comorbidity in children are still newer
hyperactivity disorder (ADHD), anxiety, and and present their own challenges, as comorbidity
depression in individuals with ASD presents is more difficult to detect among younger chil-
implications not only for the assessment process dren (Mannion & Leader 2013). Instruments
but in treatment planning as well (Matson, 2007). assessing comorbidity among children with ASD
Assessing for additional psychiatric or behav- include the Baby and Infant Screen for Children
ioral difficulties in individuals with ASD com- with Autism Traits, Part II (BISCUIT; Matson,
monly utilizes clinical judgment, which is Boisjoli, & Wilkins, 2007), the Autism Spectrum
informed through gathering and synthesizing Disorders Comorbidity-Child Version (ASD-CC;
3 Purposes of Assessment 39

Matson & Gonzalez, 2007), and the Autism understanding of the child, it may be beneficial
Comorbidity Interview-Present and Lifetime and appropriate to have him or her participate in
Version (ACI-PL; Leyfer et al., 2006). Research the feedback session. The final comprehensive
examining these new instruments has primarily report provided to the caregivers should provide
established internal consistency, establishment of the assessment results in clear, easy to understand
cutoff scores, and validity; however, additional terms, emphasizing the individual’s unique
studies are needed to establish replication (Neil, strengths and areas of difficulties. Assessment
Moum, & Sturmey, 2014). results should be directly tied to the intervention
In light of these limitations to the differential and follow-up recommendations provided within
diagnosis process, several studies have docu- the report (Volkmar, Langford Booth, McPartland,
mented the commonality of comorbid psychopa- & Wiesner, 2014).
thology in ASD, although the exact rate of The National Professional Development
prevalence remains debated. Research examining Center (NPDC) on ASD and the National
rates of comorbidity among individuals with Standards Project (National Autism Center 2009)
ASD have reported widely varied results depend- reviewed literature and established evidence-
ing upon the age range of individuals sampled based practices (EBP) for individuals with autism
and the method of assessment. For example, in a from birth to 22 years of age. Both groups
sample of children with ASD, Joshi et al. (2010) included reviews of the research literature
found that 95 % had three or more comorbid through 2007 and applied criteria for determining
diagnoses, while Mannion, Leader, and Healy which studies provided evidence of efficacy for
(2013) calculated that 46 % of the children in intervention practices. At the time of the initial
their sample experienced at least one comorbid review, the NPDC identified 24 intervention
disorder in addition to ASD. Furthermore, modalities that met criteria for EBP for individu-
comorbid conditions have been found to be more als on the autism spectrum. From the analysis
prevalent among adolescents and adults with conducted by NSP, 11 “established” treatments
ASD. More specifically, disorders that have been (i.e., treatments with sufficient evidence to confi-
found to have the highest level of overlap with dently determine that the intervention produces
ASD include depression, anxiety disorders, benefits for a child on the autism spectrum) were
ADHD, intellectual disabilities, and language identified. The results of recommended EBP for
disorders. The section of the present volume ded- individuals with ASD provided by the two
icated to the assessment of comorbid disorders analyses were remarkably similar. The NPDC
will provide the reader with a more thorough and provided an updated review of EBP for individuals
in-depth review of these, and other additional dis- with ASD in 2014, which broadened the previous
orders that commonly co-occur with ASD. NPDC review by incorporating intervention
literature that had been published subsequent
to the initial review, expanding the timeframe
From Assessment to Intervention previous to the initial review, and utilizing a
more rigorous review process. The updated review
A final and crucial component of the assessment of EBP for individuals with ASD included
process is providing caregivers with the results of 27 intervention practices and is comprised of a
the diagnostic evaluation. Ideally, a feedback ses- variety of intervention techniques including
sion should be held with caregivers immediately fundamental components of applied behavior
following the evaluation or soon thereafter. analysis, assessment tools for analyzing behavior
Results should be shared in a setting and manner to inform intervention, and systematic behavioral
that encourages caregivers to engage in an active practices used to facilitate skill acquisition.
discussion about the findings and voice any ques- The results of the diagnostic assessment can
tions or concerns that arise during the informing be used to inform an individual’s intervention
process. Depending on the age and level of plan by identifying areas of relative strengths and
40 L. Gardner et al.

difficulties and targeting areas of difficulty with References


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Report Writing for Autism
Spectrum Disorder Evaluations 4
Brian Belva, Aaron J. Fischer,
Amber M. Hasty Mills, Ashley R. Dillon,
Amanda J. Beeman, and Julie Cash

provide information to the referral source and


Introduction others involved in the individual’s treatment and/
or care (Lichtenberger, Mather, Kaufman, &
Autism spectrum disorders (ASD) are develop- Kaufman, 2004). A psychological report should
mental disorders that include social and commu- be integrative and includes results from all par-
nication impairments as well as restricted and ties involved in the evaluation. Components that
repetitive patterns of behavior (RRB; Chowdhury, are commonly included in a comprehensive
Benson, & Hillier, 2010; Fodstad, Matson, Hess, assessment report include background informa-
& Neal, 2009). ASD affects approximately 1 % tion, behavioral observations, psychometric test-
of children (Baird et al., 2006), with a more ing results and interpretation, summary/
recent prevalence rate estimating that 1 in 68 diagnostic formulation, and recommended
children aged 8 years old is diagnosed with ASD resources for parents and professionals
(Centers for Disease Control and Prevention (Lichtenberger et al., 2004; Saulnier & Ventola,
[CDC], 2014). Therefore, a comprehensive 2012). Outlined below is further detail concern-
assessment and, in turn, a well-written report are ing these common components of an ASD-
needed to enhance treatment, guide and inform focused psychological evaluation.
instruction specific to the individual’s needs, and

Background History
B. Belva, Ph.D. (*) • J. Cash, Psy.D.
Pediatric Psychological Associates, When conducting a comprehensive neurodevel-
Louisville, Kentucky, USA
opmental evaluation for an individual suspected
e-mail: brianbelva@gmail.com
to have an ASD, it is important to conduct a thor-
A.J. Fischer, Ph.D.
ough background history (Matson & Golden,
University of Utah, Salt Lake City, UT, USA
2014). Considering the limited amount of time
A.M.H. Mills, Psy.D.
most professionals have to gather information as
Shelby County Schools, Memphis, TN, USA
well as the sheer breadth of relevant information
A.R. Dillon, Ph.D., L.P.
that informs a diagnosis of ASD, practitioners
Fraser Child and Family Center,
Minneapolis, MN, USA must use their time efficiently by asking germane
questions (Andersson, Miniscalco, & Gillberg,
A.J. Beeman, Psy.D.
Cincinnati Children’s Hospital Medical Center, 2014). The following sections describe the criti-
Cincinnati, OH, USA cal areas of information that should be gathered

© Springer International Publishing Switzerland 2016 45


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_4
46 B. Belva et al.

and the rational for inquiring about each area. care provided (e.g., neonatal intensive care unit),
A caveat in writing the background history section the amount of time spent in neonatal care, and
is that the clinician should be diligent to include any neonatal condition (e.g., jaundice). Also,
all relevant information while writing concisely describe the behavior of the infant and provide
and, clearly, keeping the audience of the report in relevant information regarding any medical
mind. conditions.
After reporting on the birth history and behav-
ior as an infant, the clinician should describe the
Identifying Information individual’s achievement (or delay) of his/her
developmental milestones (Kenworthy et al.,
The identifying information section orients the 2012). These milestones include motor, toilet
audience of the report to the individual character- training, and language. Motor milestones that
istics of the person being evaluated. In this sec- should be considered include the age at which the
tion, the clinician should include the child’s first child first began sitting without support and walk-
name and last name, age (reported in years and ing without assistance. Fine and gross motor
months [e.g., 4 years and 10 months old]), race skills, which pertain to precise motor movement
and ethnicity, and gender. Also, information of the hands and fingers (e.g., holding a pencil,
should be included about the individual’s parents coloring, opening objects) and large movements
or guardians and other individuals who live in the and body control (e.g., sitting, crawling, walk-
household. Finally, information should be ing), respectively, should also be reported.
included concerning the location where the indi- Regarding toilet training, the clinician should
vidual resides (i.e., city and state). If the individ- describe the age at which toilet training was mas-
ual spends time at different residences (e.g., tered and any difficulty with toileting training
divorced parents with shared custody) or has visi- such as incontinence (i.e., enuresis and encopre-
tation with parents, report the schedule when the sis) or constipation. If the individual was inconti-
individual lives with different caregivers (e.g., nent, the clinician should describe the time of day
every other weekend with father). that the individual was incontinent (i.e., noctur-
nal or diurnal).

Early Development Language Development


and Communication
This section should present information on pre- Considering language and communication skills
natal development, birth history, behavior as an are core deficits in individuals with ASD (Kwok,
infant, and developmental milestones (Easson & Brown, Smyth, & Cardy, 2015), special attention
Woodbury-Smith, 2014). Regarding prenatal should be paid to this section in the report. It is
development, the clinician should include infor- important to note that some caregivers might
mation concerning use of fertility drugs, compli- have difficulty remembering specific details
cations during pregnancy to the individual or about their child’s early language development;
mother (e.g., gestational diabetes, hemorrhag- however, estimates of the following details are
ing), exposure to teratogens (e.g., drugs, alcohol, acceptable and because of their critical impact on
and tobacco), and any prescription medications the diagnostic formulation (Nordahl-Hansen,
(Mamidala et al. 2013). When reporting birth his- Kaale, & Ulvund, 2014). The communication
tory, include information about labor and deliv- section should include information concerning
ery (e.g., Cesarean section, vaginal birth), use of the age at which the individual began babbling,
epidural, gestational age, and birth weight. If the spoke his/her first words and phrases, and spoke
individual was born prematurely (i.e., the organs in complete sentences. This section should also
were not completely developed) or preterm (i.e., include information about receptive language
before 38 weeks), describe the type of neonatal skills, specifically the complexity of directions
4 Report Writing for Autism Spectrum Disorder Evaluations 47

that the individual follows (i.e., single-step section (Cervantes & Matson, 2015; Hanley
instructions, multistep instructions, etc.; Kjellmer et al., 2014). As such, this section should clearly
et al., 2012). Next, information about the indi- articulate the specific social strengths and weak-
vidual’s use of nonverbal communication, such nesses of the individual. The clinician should
as gestures, should be reported. Regarding ges- begin by reporting early social skills including
tures, the clinician should distinguish which eye contact, social smiling, responding to name,
type(s) of gestures the individual uses and joint attention. Eye contact should be dis-
(Lambrechts, Yarrow, Maras, & Gaigg, 2014), cussed in terms of the individual’s ability to use
including descriptive (e.g., holding one’s hands eye contact to facilitate nonverbal social commu-
apart to show how big something was), conven- nication (Louwerse et al., 2013), as well as in
tional (e.g., shaking one’s head to indicate no), response to stimuli in the environment (e.g.,
and instrumental (e.g., holding one’s hand out, looking at a parent/caregiver after hearing a loud
like begging, to obtain something) gestures. noise). Social smiling should be noted as it relates
Moreover, the clinician should report if the indi- to the individual’s directed response (i.e., smiling
vidual currently or previously used other people toward a parent/caregiver) to smiles emitted by a
as a tool to communicate their needs or convey parent/caregiver. In addition, responding to an
information (e.g., grapping the hand of a parent individual’s name should be reported in terms of
and using it to point to a picture in a book or tak- the frequency of responding and the quality of
ing them to the refrigerator to access juice). the response.
Beyond gestures, clinicians should gather Joint attention, which is defined as sharing
information about potential unusual communica- experiences between two individuals, is a pivotal
tion problems that are part of the diagnostic crite- social skill in young children (Jones & Carr, 2004).
ria for ASD (Hattier & Matson, 2012). This Joint attention includes a variety of gestures (e.g.,
includes echolalia, undirected repetitive vocal- giving, showing, and pointing) and integrated eye
izations, difficulty understanding metaphorical contact. In the report, a clinician should report if
language and/or jokes, and idiosyncratic speech. the individual previously or currently engages in
When gathering information related to idiosyn- joint attention, the types of behaviors they emit as
cratic speech, the examiner should consider qual- part of their joint attention repertoire, and if they
ity, rate, rhythm, tone, volume, and any pronoun initiate and/or respond to joint attention (Krstovska-
reversals or atypical language use. Finally, in this Guerreo & Jones, 2013).
section, a clinician should include information After reporting information about early social
about alternative modes of communication (e.g., skills, the clinician should describe the individu-
American Sign Language, picture exchange com- al’s social interactions with peers (Deckers,
munication system, augmentative communica- Roelofs, Muris, & Rinck, 2014). This informa-
tion devices). Language regression is also an tion is dependent on the individual’s age and
important consideration, and the clinician should social functioning. Important aspects of social
include the age of regression in the report (van interactions with peers include how the child
der Meer, Sutherland, O’Reilly, Lancioni, & engages in group settings, whether he/she has
Sigafoos, 2012). Other information about social preferred friends, whether the child engages in
communication should be reported in the follow- collaborative/interactive play with peers, and
ing section, social skills. whether the individual is responsive when peers
approach him/her to engage in play. In addition,
how peers respond to the child is an important
Social Skills consideration. For older children, details about
any romantic relationships may be appropriate to
Similar to communication skills, social skills are include.
a core deficit of individuals with ASD and a criti- Additional information about social commu-
cal component of the background information nication skills is important to include in this section
48 B. Belva et al.

(Radley et al., 2014). Specific social communica- the child’s typical mood. The child’s mood is
tion skills include initiating/responding in con- particularly relevant to any differential diagnoses
versations, reciprocal communication skills (e.g., that might be present, such as anxiety.
back-and-forth comments), understanding social
relationships, and social pragmatics.
Sensory Issues

Play Skills Individuals with ASD often exhibit hyperreactiv-


ity to sensory stimuli and/or have idiosyncratic
During early childhood, play skills are particu- sensory interests (Tomchek, Huebner, & Dunn,
larly important because they allow children to 2014). As sensory seeking behavior or sensory
access and learn from their environment; more- sensitivities are part of the diagnostic criteria for
over, they facilitate social interactions and com- ASD, it is important to gather this information
munication with others (Morrison, Sainato, across all senses. The clinician should differenti-
Benchaabane, & Endo, 2002). Gathering infor- ate whether sensory sensitivities are hyperreac-
mation related to the child’s play yields impor- tive (e.g., adverse reaction to noises) or
tant diagnostic information. More specifically, it hyporeactive (e.g., seemingly under reactive
is in play that delays in social communication response to painful stimuli).
and RRB are often observed. It is important to
report whether the child engages in any atypical
play behaviors (i.e., playing with parts of objects Behavioral Concerns
or playing with toys in a nonfunctional manner),
exhibits intense/restricted interests in certain play Individuals with ASD evince behavioral con-
materials, and displays imaginative/pretend play cerns that vary in their topography and encom-
and the extent to which the child includes others pass different functions (Lane, Paynter, &
in his/her play. Examples of functional and pre- Sharman, 2013). In regard to behavioral con-
tend play include rolling a car on a table and cerns, a clinician should report information
brushing a doll’s hair with a spoon, respectively. across each of the following areas: RRB, disrup-
Finally, the clinician should report if the individ- tive behavior (e.g., aggression, tantrums, non-
ual currently or previously engaged in imitation compliance, and self-injury), substance use or
of others’ play. abuse, sexual behavior, and adaptive behavior
skills. The clinician should report on each area
that the individual or their parent endorsed.
Emotional Skills Specifically related to RRB, whether behaviors
(e.g., body rocking, hand flapping, toe walking,
Broadly, individuals with ASD have difficulty pattern running, tics), interests (e.g., frequently
interpreting and expressing emotions (Dapretto and acutely discussing Pokémon, entomology, or
et al., 2006). Clinicians should report on the indi- “Dr. Who”), or activities (e.g., navigating the
vidual’s emotional understanding, emotional grocery story in the same way) are endorsed, the
expression, and emotional regulation. clinician should clearly describe RRB, providing
Additionally, the clinician should describe the examples and discussing how the behaviors cause
individual’s ability to identify emotions in others dysfunction for the individual. Additionally, the
and empathize with them. The clinician should clinician should report what happens when others
also describe the individual’s proclivity to be attempt to disrupt or interrupt the individual
affectionate toward others (e.g., initiates giving while he/she is engaged in RRB.
hugs to others) and their desire to receive affec- Next, the clinician should report any concerns
tion (e.g., asks others for a hug or kiss). It is in related to disruptive behavior (Kaat & Lecavalier,
this section that the examiner should comment on 2013). Within this area, specific information
4 Report Writing for Autism Spectrum Disorder Evaluations 49

should be discussed regarding aggression, non- Eating


compliance, tantrums, and self-injury. The clini-
cian should clearly convey the type of behavior Individuals with ASD commonly have feeding
(e.g., hitting, hand banging, eloping, dropping to problems (Luiselli, 2006). Feeding difficulty
floor), antecedents of the behavior, and how oth- includes food selectivity, food refusal and avoid-
ers respond to those behaviors. Should this yield ance, and specific problem behaviors associated
any clinician or parent safety concerns for the with instructions to eat certain foods. In this sec-
child, the report should include relevant portions tion, the clinician should report the individual’s
of the safety assessment that the clinician con- eating habits. Additionally, the clinician should
ducts with the family. If the individual being describe if the individual is able to self-feed or
evaluated has a history of or currently uses drugs needs assistance or if the individual requires any
or alcohol, the clinician should include that artificial feeding (e.g., tube feeding). Finally, the
information in this section as well. Substances of clinician should report if the individual has any
the individual used/uses and the frequency and motor difficulties with feeding (e.g., oral-motor
duration of the substance use would be impor- skills, chewing, swallowing) and if the individual
tant to outline. Prescription medication that has engages in any incompatible feeding behaviors
been prescribed by a physician should be such as chocking, gaging, or vomiting.
reported later in the report; however, if the indi-
vidual being evaluated reports abuse of pre-
scribed medications, the clinician should include Sleeping
that information in this section. Likewise, in this
section, the clinician should discuss if the indi- Research indicates that children with ASD have
vidual engages in sexual behavior, if develop- sleep difficulties, with prevalence rates ranging
mental appropriate. If so, the clinician should from 44 to 83 % (Richdale, 1999). Considering
inquire if the individual is engaging responsible these data, particular attention should be placed
sexual activity (e.g., uses protection and under- on gathering and reporting information about the
stands the potential contraction of a sexually individual’s sleep. Specifically, the clinician
transmitted disease). should include information about any difficulties
Finally, the clinician should discuss the with falling and remaining asleep, night terrors/
individual’s adaptive behavior. Adaptive behav- nightmares, early waking, naps, and sleep
iors (i.e., skills of daily living) are useful for hygiene. If any problems exist within the previ-
people to conduct themselves safely and respon- ously mentioned areas, the clinician should dis-
sibly (MacDonald, Lord, & Ulrich, 2013). They cuss the dysfunction and how the family responds
encompass a broad domain of skills (e.g., toilet- to those sleep issues.
ing, cleaning, dressing, navigating in the com-
munity, etc.). Particular attention should be
placed on toileting skills, especially for young Educational and Employment History
children. If issues with toileting exist, the clini-
cian should describe the frequency of enuresis/ The Individuals with Disabilities Education Act
encopresis, the time of day that they typically (IDEA, 2004) ensures that all children with
occur, and any consequences for incontinence. qualifying disabilities, including children with
Within the report, the clinician should describe ASD, receive a free and appropriate education
the individual’s ability to perform these skills; in a setting as similar to their typically develop-
however, as part of a comprehensive ASD evalu- ing peers as possible. The clinician should begin
ation, more information about adaptive skills is this section by reporting the names of the school
reported through standardized measures of and current grade. Also, a list of the previous
adaptive functioning. schools, grades attended at those schools, and
50 B. Belva et al.

grade retentions or promotions should be provided. quency and duration of each service, and each
Next, the clinician should discuss the type of set- therapy’s effectiveness. Next, information con-
ting in which the individual receives his/her edu- cerning interventions the individual received
cation. This setting should be discussed in terms after age three should be noted. These could be
of the level of inclusion (e.g., substantially sepa- services received in school (e.g., SLT, OT, PT,
rate classroom, self-contained classroom, inclu- ABA therapy, social skills groups) as well as ser-
sion classroom). The clinician should also discuss vices outside of school. Other interventions could
if the individual has an Individualized Education include job coaching, community vocational
Program (IEP) and report the individual’s educa- training, or alternative interventions (e.g., special
tional classification. The clinician should report diets).
specific services that the individual receives under
the IEP (e.g., speech and language service, occu-
pational therapy, Applied Behavioral Analysis Medical History
Therapy, adapted physical education, etc.).
If applicable, the clinician should report the Individuals with ASD, like those who are typi-
individual’s current job status and/or job history. cally developing, experience a variety of comor-
In this section of the report, the clinician should bid medical conditions (e.g., sleep problems,
discuss the types of jobs the individual currently hormone dysfunction, metabolic disorder, gastro-
or previously held, his/her responsibilities at that intestinal disorders, and seizure disorders).
job, and any information about difficulties per- Considering the potential for comorbid medical
forming his/her job or terminations (Gal, Landes, conditions, clinicians should obtain thorough
& Katz, 2015). For individuals with ASD who information from the individual’s family (or the
are able to attend college, this section of the individual, if appropriate). Relevant medical
report should also reflect information about cur- information includes chronic concerns, allergies,
rent or previous postsecondary education and any medications, surgeries, or hospitalizations. Of
difficulties the individual had in those settings or particular relevance are seizure disorders, gastro-
while obtaining entrance into those settings. intestinal problems, traumatic brain injury, and
exposure to lead. Finally, the clinician should
report if the individual received genetics testing,
Intervention History electroencephalography (EEG), or magnetic res-
onance imaging (MRI) as well as the results of
There are a variety of interventions that an indi- those procedures.
vidual with ASD may have received. These inter-
ventions range from behavioral treatments for
skill acquisition to special diets. Considering the Psychiatric and Trauma History
variety of interventions and their empirical sup-
port, it is important to report the types of inter- Although not unique to an evaluation for an indi-
ventions the individual being evaluated currently vidual with ASD, psychiatric and trauma history
or previously received and their effectiveness. are essential elements of the report (Mehtar &
First, the clinician should use this section to dis- Mukaddes, 2011). Trauma could include abuse,
cuss enrollment in early intervention (EI) ser- neglect, witnessing or experiencing violence in
vices before age three (MacDonald, the community or home setting, or traumatic loss
Parry-Cruwys, Dupere, & Ahearn, 2014). of a loved one. If trauma is endorsed, the clini-
Specifically, the clinician should report which cian should include any agency involvement
type of services the individual received (e.g., including the Department of Social Services,
speech and language therapy [SLT], occupational Department of Children and Families, or
therapy [OT], physical therapy [PT], applied Department of Protection for Persons with
behavioral analysis [ABA] therapy, etc.), the fre- Disabilities. Each state has their own agency for
4 Report Writing for Autism Spectrum Disorder Evaluations 51

the previously described departments and clini- pertinent to the new report, as they provide details
cians should be familiar with their respective that may inform the interpretation of current test
state agencies. If the individual being evaluated results and document previous levels of function-
was followed by any agency, a description of the ing that affect diagnostic conclusions. However,
services they received should be included. it can be difficult to decide what information
The clinician should also report any psychiat- from these reports to include and how to incorpo-
ric history for the individual being evaluated. The rate it into the background information section in
psychiatric history should include psychiatric a clear and concise manner.
hospitalizations, the date and length of hospital- As with all sections of the diagnostic report,
ization, and the reason for the hospitalization. the writer should always keep the referral ques-
Besides hospitalization, the clinician should tion at the forefront of his/her mind when decid-
report if the individual being evaluated receives ing what information to omit or include
services from a psychiatrist. If so, the clinician (Lichtenberger et al., 2004). Asking oneself “how
should report the psychiatrist name, duration and does this detail help me answer the referral ques-
frequency of visits, and name of prescribed medi- tion?” can aid in the decision of whether to
cations (including frequency and dosage). This include specific information from previous evalu-
section should also include the individual’s risk ations. Necessary information will likely provide
for suicide. some context for the previous evaluation, provide
support for differential/comorbid diagnoses,
inform the reader’s understanding of the client’s
Family History course of development, and highlight progress
that has been made over time (Saulnier & Ventola,
In this section of the background history, the cli- 2012).
nician should discuss the family history of psy- As a general guideline, when summarizing the
chopathology for the individual being evaluated. results of previous evaluations, it is important to
It is considered proper etiquette to report this include the month/year of testing, referral ques-
information in a somewhat vague manner (i.e., tion at the time of testing, an overview of test
there is a history of bipolar disorder in the imme- results, diagnoses given, and the family’s follow-
diate family). In this way, the report maintains its up with recommendations (Lichtenberger et al.,
focus on the child, and the inclusion of family 2004). It is also important to note the previous
history does not present a barrier to families who examiner’s conclusions concerning the validity
might not wish to share this information with out- of the results. If the assessment was thought to be
side sources, such as the school. invalid, it may be misleading to include the test
In addition to the family history of psychopa- results (i.e., a Full Scale IQ, etc.) and is more
thology, the clinician should also discuss the rela- appropriate to emphasize the evaluator’s conclu-
tionship of the individual’s parents, the family sions. This general guideline can also be applied
support system (e.g., help from extended family to the review of other records, such as medical
or neighbors), community/religious involvement, records or Individualized Education Programs
and any recent family or socioeconomic (IEPs).
stressors. The information should be summarized briefly
and may be sufficiently captured in a few sen-
tences. It is not necessary to include the level of
Previous Psychological Testing detail that the writer will use in his/her own inter-
pretation of test results (e.g., presenting test results
The review of written records is often an impor- in charts, full analysis of a profile, etc.). However,
tant component of collecting adequate back- there may be unique circumstances in which it is
ground information. These sources likely contain appropriate to go into further detail. For example, if
information (e.g., test results, diagnoses, etc.) the writer finds that previous test results conflict
52 B. Belva et al.

with the results of the current evaluation, there may al’s current level of functioning. This is predomi-
be cause for a more thorough summary of the pre- nately comprised of behavioral observations, as
vious testing in order to highlight these differences. well as assessment of cognitive aspects (i.e.,
In this situation, a higher level of detail in the back- delusions, hallucinations, insight; Morrison,
ground information section will enable the writer 2008). It should be noted that these cognitive
to interpret and/or create hypotheses about these aspects may be difficult to assess in young chil-
discrepancies later in the report. dren, nonverbal, or lower functioning individuals
who may not be able to answer questions about
the content of their thoughts or indicate they are
Behavior Observations oriented to person, place, time, and situation.
However, behavioral observations about the indi-
Behavior observations are essential to any ASD vidual’s mood, affect, and speech provide a
evaluation. The reader may notice that the format of glimpse into other aspects of the individual’s
the behavioral observation section reflects the back- internal world. For the purposes of this text, for-
ground history section. However, in this section, the mal mental status tasks will not be described,
focus shifts from reported diagnostically relevant rather, behavioral observations that are particu-
information to observed diagnostically relevant larly relevant to an assessment of ASD will be
information. This section, in particular, allows the provided. Three areas of general behavioral
clinician to provide readers with a picture of the cli- observations include the individual’s appearance
ent’s presentation and ultimately provides an initial and physical behaviors, mood and affect, and the
illustration of the diagnostic conclusion. As with presentation of speech, or lack thereof (Morrison,
other sections, the key to writing the behavior 2008). These three areas require simple observa-
observation section is to determine which informa- tion during interview, testing, or other planned
tion is most relevant to the referral question (i.e., observations.
“Does this child have ASD?”) and if the informa-
tion adds anything to the overall evaluation of the
individual. Saulnier and Ventola (2012) note that Appearance
any observations should have a clear purpose for
inclusion. It is wise to avoid rehashing every detail Physical appearance gives the clinician more
that occurred during the observation. information regarding the individual’s level of
This section includes observations from the functioning, the care being provided to him/her,
totality of the evaluation, beginning in the wait- information regarding culture and socialization,
ing room through saying goodbye. For some cli- and physical abilities. When assessing an indi-
nicians, such as school providers or those who vidual, clinicians make note of the client’s eth-
provide in-home services, observations in other nicity (Morrison, 2008). The best way to complete
settings, such as the classroom, may be benefi- this task during the evaluation is to ask the indi-
cial. In order to accurately and concisely present vidual and/or his/her caregivers, regarding the
behavioral observations to the reader, one must individual’s cultural and ethnic heritage. This
develop a strong foundation in basic behavioral information gives the clinician and the report-
observations, as well as be familiar with ASD reader information regarding treatment and social
diagnostic criteria, common features of the disor- concerns, as the effects of a diagnosis of ASD
der, and differential diagnoses. may vary from culture to culture.
In addition to identifying ethnicity, a clinician
should include information regarding the client’s
General Considerations dress and general appearance. An adult seeking
an evaluation for ASD who has disheveled cloth-
According to Morrison (2008), a mental status ing, unkempt hair, and presents with an odor has
exam is the clinician’s appraisal of an individu- a different level of functioning as compared to an
4 Report Writing for Autism Spectrum Disorder Evaluations 53

individual who is impeccably dressed, with speech disturbances, or use of fluent speech,
starched clothing, and well-combed hair. These should be noted in the behavior observations of
two individuals may also be presenting with dif- the report. Furthermore, note if there is an unusual
ferent symptomatology. In addition, appropriate- tone, rate, volume, or pitch (Gebauer, Skewes,
ness of dress is worth noting. For instance, an Horlyck, & Vuust, 2014). Individuals with ASD
individual who is wearing a tank top and sandals may also present with unusual, idiosyncratic
during a snowstorm is displaying difficulty with speech. It is also important to note whether the
self-care and judgment. client’s vocalizations were socially directed or
self-directed and whether there was any atypical
language use (e.g., scripted, repetitive, echolalic
Mood and Affect speech).

According to Morrison (2008), mood is the indi- Social Communication


vidual’s reported emotional state, whereas affect Social communication is an aspect of language
is the way one shows their emotional state. that refers to deficits in nonverbal communica-
Although nonverbal and/or lower functioning tion (Konst, Matson, Goldin, & Williams,
individuals may not be able to describe their 2014). This includes difficulty integrating non-
mood, it may be inferred from their behavior verbal and verbal communication, poor eye
(e.g., throwing items, stomping on the floor, and contact, difficulties using nonverbal communi-
various facial expressions may indicate an indi- cation (i.e., gestures), and diminished use of
vidual is angry). In cases where a verbal indica- facial expressions (Lambrechts et al., 2014).
tion of current mood is not available, one may Statements about the client’s use of the above-
include a brief statement indicating why mood listed nonverbal communicative behaviors
was perceived this way. For example, “the cli- should be included.
ent’s mood was angry throughout the evaluation,
as evidenced by throwing items, screaming,
clenching fists, and frequent frowning” would Social Interactions
give a reader a glimpse of why the assumption of
angry mood was made. Social strengths and deficits should be noted in
Following a statement regarding the client’s the behavior observation section of the report.
mood, it is important to indicate if the affect was For instance, children with ASD may have diffi-
congruent with the stated mood. For instance, in culty initiating or maintaining to-and-fro conver-
a report, one may write, “the reported mood was sations, sharing interests with others, or attending
‘happy’, with incongruent affect. The client often to the interests of others. Additionally, they may
frowned, buried his hands in his face, and became exhibit difficulties in sharing emotions, present-
teary during the evaluation.” In addition, one may ing with a socially appropriate affect, or have dif-
note if the affect is “blunted” (i.e., decreased ficulties with beginning or replying to social
facial expression of emotion) or “flat” (i.e., no interactions (Mahoney, Breitborde, Leone, &
facial expression of emotion). Ghuman, 2014; Wang & Tsao, 2015). During the
observation, it would be prudent to attend to how
the client responds to small talk, the content of
Speech/Language their speech, and their interests during the
evaluation. Important questions to inquire about
Speech difficulties and language delays are com- include the following: Does the client respond to
mon among individuals with ASD (Matson, probes such as “How are you?” and reciprocate
Kozlowski, & Matson, 2012). Children may lack by asking the examiner questions? Does the cli-
speech, speak only in single words or short ent talk exclusively about his/her interests or is
phrases, and/or use little pragmatic speech. These he/she able to discuss other topics or the interests
54 B. Belva et al.

of other individuals? Does the individual respond attempts to keep things the same, or insist on
to probes to initiate a conversation? engaging in behavioral rituals (Stoner, Angell,
Including observations of play is also relevant House, & Bock, 2007). When observing the cli-
to social interactions and should be included in ent, look to see how he/she responds to transi-
this section. Use of imitation, imagination, and tions and small changes in his/her routine.
functional play should be noted. Examples of Typically, being present for an evaluation means
questions to address in this section include the a break in the routine, so one may have an idea of
following: Does the child use miniatures as fig- how the client reacts to changes simply by having
ures that interact with each other? Does he/she them come to the evaluation. In addition, the cli-
use objects to represent other items (e.g., using a nician should note if the client displays any ritu-
box as a house)? Does the child play with toys in als or exhibits distress when something changes
an immature manner by just banging, spinning, during the evaluation (e.g., taking away items
or mouthing? and moving to a different room).
Restricted interests in very specific topics are
also important to note (Szatmari et al., 2006).
Behavior This can be observed by noting the content of the
client’s speech such as experiencing difficulties
Observations related to the client’s psychomotor in switching topics of conversation and/or pro-
behavior are important to note in the behavior viding detailed information about a certain topic
observations section. This information will help that is inappropriate to the setting. In addition, a
illustrate the child’s engagement in the activities clinician may attend to the individual’s interest in
that were presented and ultimately informs con- objects presented in the evaluation, as well as
siderations regarding the validity of the assess- insistence on keeping an object from home
ment session. Psychomotor observations may nearby. Individuals with ASD may also exhibit
include fidgeting, level of activity, movement intense interest with topics that are unusual for
around the room, and speed of movement. Other their age or cognitive level. For instance, a 4-year-
relevant motor activities include picking at skin, old boy may be highly interested in washing
inappropriate touching (e.g., touching privates), machines, to the extent that he can name different
the inability to move as would be expected (e.g., models of washing machines among other details.
movement disorders), or falling asleep or diffi- Finally, hyper- or hyporeactivity to sensory
culty concentrating on the task at hand (Morrison, input or unusual interest in sensory aspects of the
2008). environment (Tomchek & Dunn, 2007) should
also be included in the behavior observation sec-
Restricted and Repetitive tion. For example, a clinician should take note of
Behaviors (RRB) how the client responds to sensory experiences in
RRB may be very easy or very difficult to the environment such as sounds, lights, and
observe, depending on the frequency and the pre- textures.
sentation of the behavior in question. These
behaviors may include repetitive/unusual motor
movements such as hand flapping, rocking, jump- Implications for Validity
ing, spinning, or walking on toes (Bodfish, of the Evaluation
Symons, Parker, & Lewis, 2000). Some repetitive
movements may be more difficult to observe The final portion of the behavioral observation
such as rubbing or eye rolling. RRB may also section should address the validity of the evalua-
include inappropriate use of object, such as lining tion based on what was observed by the exam-
up, banging, or spinning toys (Maestro et al., iner (e.g., client level of engagement in activities)
2005). Children with ASD may be resistant to and whether this behavior was representative of
changes in their routine, be resolute in their the client’s typical functioning. If the caregiver
4 Report Writing for Autism Spectrum Disorder Evaluations 55

or client indicates illness, fatigue, or discomfort, examples of specific behaviors observed or


that may affect their performance during the endorsed to support diagnoses.
evaluation and it is important to note in the
report. Measures of Cognitive/Developmental
Functioning
Ozonoff et al. (2005) note that one’s level of
Assessment Instruments: ASD- intellectual functioning is associated with sever-
Specific Assessment ity of ASD symptoms, ability to learn new skills,
and level of adaptive functioning. Additionally,
An ASD evaluation must include information level of intellectual functioning is one of the best
obtained by one or more measures designed spe- predictors of later outcome for individuals with
cifically to assess for symptoms of ASD. These ASDs (Harris & Handleman, 2000). Reasons to
measures provide caregiver, teacher, or self- assess for intellectual functioning would be to
report and/or direct assessment of an individual’s obtain the individual’s strengths and weaknesses
social communication and RRB. In the report, and determine appropriate educational place-
presentation of the assessment results, as well as ments and treatment recommendations.
interpretation of the results, is important in order
to further illustrate what the reader will later see Adaptive Functioning Scales
in the diagnostic formulation. Assessment mea- According to Ozonoff et al. (2005), there are sev-
sures that look specifically at ASD signs and eral reasons to use an adaptive measure when
symptoms may consist of parent report measures assessing for ASD. Intellectual disability is very
and measures designed for direct assessment and common among individuals diagnosed with
observation of ASD behaviors. Due to the limited ASD, and intellectual disability cannot be diag-
time an evaluator has with a client, parent/care- nosed without a measure of an individual’s adap-
giver report measures may be beneficial to assess tive functioning. Similar to intellectual
for behaviors that one may not see during the for- functioning, adaptive functioning level is impor-
mal assessment. However, due to the parents’ tant for treatment recommendations as reasons
lack of formal training in assessment and diagno- can indicate skills to target in therapy.
sis and to provide an objective measurement of
reported deficits, parent report should not be suf- Behavior Scales
ficient in diagnosing ASD (Ozonoff, Goodlin- Individuals of all ages with an ASD may
Jones, & Solomon, 2005). Formalized exhibit behavioral difficulties. These difficulties
observational data should accompany parent/ can range from a variety of topographies and
caregiver rating scales in arriving at an ASD functions. A robust evaluation should include
diagnosis. data from a behavioral scale from multiple
sources such as parents and teachers. Results
from these scales can inform decisions regard-
Other Important Instruments ing comorbid diagnoses as well as treatment
to Consider recommendations.

In addition to ASD-specific measures, it is impor-


tant to consider other test instruments that may be Summary, Diagnostic Impressions,
helpful in considering diagnosis. These measures and Recommendations
include caregiver, teacher, or self-report and/or
direct assessment of an individual’s intellectual, Summary
language, adaptive, sensory, and behavioral pat-
terns which are all important to consider when The purpose of the summary section of the
assessing for an ASD. Similar to the ASD- report is to concisely synthesize all of the previ-
specific measures, it is important to also include ous information into succinct description of the
56 B. Belva et al.

individual being evaluated and the obtained Recommendations


results. This section is important due to the fact
that it is often the first section that the consumer The recommendations inform next steps that are
reads. The author should write this section so relevant for the individual being evaluated.
that it builds a convincing case for the diagnosis Moreover, the recommendation section allows
given. The clinician should begin by summariz- the individual and/or their caregivers to under-
ing identifying information about the individual stand specific interventions, treatment providers,
being evaluated, including information about and resources that are suggested to improve out-
age, gender, current grade and name of school comes. The following information highlights the
(or place of employment), and any previous recommendation areas that clinicians might focus
diagnoses. Next, it is important to include a on and provides examples of specific services
brief description of any services that the indi- that individuals with ASD are commonly given
vidual being evaluated currently receives (e.g., (i.e., evidence-based practices), as based on the
EI, SLT, etc.). This section should also include a needs of the specific individual.
brief summary of particularly relevant behav-
ioral observations. Education and Employment
Once the clinician has adequately described The recommendations in this section vary
the individual being evaluated, they should depending on the age of the individual being
systematically report the findings from each of evaluated. If the individual is very young (i.e.,
the measures given in the evaluation. The data between birth to 3 years old), he/she may benefit
from these measures should be synthesized from a comprehensive early intervention (EI)
and reported in one to two sentences, with per- program that is supervised by a Board Certified
formance ranges and strengths/weakness Behavior Analyst (BCBA) or a licensed profes-
highlighted. sional for at least 25 h per week (National
Research Council, 2001). A program supervised
by a BCBA or licensed professional will ensure
Diagnostic Impressions that the individual receives applied behavioral
analytic services, which are evidence based
After summarizing the individual’s identifying (Wong et al., 2013) and supported by many insur-
information and the results of each measure, the ance providers nationally. These services typi-
clinician should integrate all of the information cally are available in the individual’s home or in
from the report, including the background his- outpatient clinic settings. Critical aspects of an EI
tory, to formulate a case conceptualization. The program include a baseline skill assessment to
clinician should state if the individual meets the determine goals (e.g., Assessment of Basic
diagnostic criteria for ASD and provide support- Language and Learning Skills, Revised or the
ing information (from background information Verbal Behavior Milestones Assessment and
and testing results) about the nature and severity Placement Program), continual data collection
of the disorder in terms of the core deficits (i.e., for progress monitoring, updates to the treatment
social communication and RRB). program as indicated by the data, frequent assess-
Individuals with ASD commonly have comor- ment of preferred items and activities, use of
bid diagnoses, and the clinician should follow the reinforcement strategies, and generalization of
previously outlined method for reporting other skills to different settings, with different people,
diagnoses the individual meets, if applicable. and using different materials.
When reporting comorbid diagnoses, it may be Once the individual no longer qualifies for EI
helpful to separate each disorder into an individ- (i.e., after age three), the individual’s local school
ual paragraph that includes all supporting infor- district is responsible for providing educational
mation for the respective diagnosis. services. The previously described BCBA or
4 Report Writing for Autism Spectrum Disorder Evaluations 57

licensed professional supervised services may be ing coping around change and transitions), which
provided by the school district as well; however, are considered consequence interventions. They
some districts may not have the capacity to pro- may also develop antecedent interventions that
vide these services, and parents would likely have provide changes in the environment (e.g., visual
to work with the school district to obtain those ser- schedules, warning, noncontingent breaks, etc.).
vices for their child. Once the individual begins In addition to antecedent and consequence proce-
preschool at the local school district, they could be dures, the PBSP can include explicit teaching
evaluated for eligibility in special education. strategies of the replacement behaviors as well as
However, the individual’s eligibility for special an outline of the reinforcement schedule and data
education is based on criteria provided by the collection procedures.
Individuals with Disabilities Education Act Regarding the IEP and PBSP, school staff,
(IDEA; Individuals with Disabilities Education BCBAs, teachers, and other professionals should
Act, 2004). Clinicians should be familiar with meet regularly to discuss the student’s progress
their state’s IDEA mandates since there are state- and take particular measures to ensure that the
specific applications. If the individual qualifies for IEP and PBSP are being implemented as planned
special education under IDEA, they will receive (i.e., treatment integrity). The individual’s family
an individualized education program (IEP). may also be included in these meetings. Parent
The IEP may emphasize social, communica- involvement is an essential component for the
tion, and behavior goals (Torana, Yasina, Chiria, success of the student, and these meetings pro-
& Tahara, 2010). Within each IEP goal, the vide an excellent opportunity to foster a strong
objectives should be criterion based and outline home-school collaboration. Another aspect to
when and under what conditions the individual consider for the IEP is the level of support and
should engage in each skill (e.g., in group work, placement that the individual needs.
during transitions, when given visual cues, etc.). The clinician may recommend the appropriate
Additionally, the IEP objectives should state the placement for the individual being evaluated
expected criterion (e.g., 85 % of opportunities, (e.g., self-contained classroom, inclusion class-
with 85 % independence) and the mastery criteria room, out of district school). Also, the clinician
for each criterion (e.g., 3 out of 4 days, 4 con- may recommend if the individual needs support
secutive days). If the individual has behavior from a paraprofessional (which would be indi-
problems, the IEP should incorporate a positive cated by improved performance working one-on-
behavior support plan (PBSP) that is informed by one during the evaluation). The placement and
a functional behavior assessment (FBA). supports that are needed will greatly depend on
The FBA should be conducted by a psycholo- the individual’s level of symptom severity.
gist, BCBA, or adequately trained behavior spe- However, regardless of the individual’s level of
cialist and assesses the antecedents and impairment, the clinician may recommend that
consequences of the individual’s problems the individual with ASD have the opportunity to
behavior. O’Neill, Albin, Storey, Horner, and interact with typically developing peer models to
Sprague (2014) provide comprehensive resource bolster his/her language, play, and social skills
for implementation of FBA in school settings. development (Wang, Cui, & Parrila, 2011).
The information from the FBA may be used to Like all children with an IEP, once the indi-
formulate a plan that can be implemented in the vidual with ASD reaches age 14, the school is
school and home setting, which will improve responsible for developing a transition plan. The
continuity. When creating the PBSP, the profes- transition plan should initially focus on prevoca-
sional can target reductions of unwanted disrup- tional skills and develop into a comprehensive
tive behavior (e.g., tantrums, noncompliance, plan that helps identify potential career opportu-
self-injurious behavior) and increases in positive, nities and skills needed to live independently.
adaptive replacement behaviors (e.g., raising Once career opportunities and required skills are
hands to speak, improving social skills, improv- identified, the school staff may create individualized
58 B. Belva et al.

learning opportunities that allow the individual practitioner (e.g., speech-language pathologist,
with ASD to reach their postsecondary goals. physician, etc.) can evaluate these presenting
Specific recommendations can include a variety problems first to rule out any medical or physio-
of adaptive behaviors including responsible man- logical basis of the problem. The clinician may
agement of money, domestic skills, and success- include the names, locations, contact numbers,
fully interacting in the community. The transition and website for each referral source.
plan is part of the individual’s IEP and should be
developed and implemented with the same con- Behavior
siderations as described previously in this sec- Any difficulties with behavior management that
tion. Although specific recommendations were endorsed during the evaluation should be
regarding school accommodations and place- addressed in this section. Behavior management
ments will likely be useful to the schools, it is spans an array of areas including compliance,
important to note that it is ultimately up to the reduction of problems behavior, toileting, organi-
school to determine the accommodations that zation and study skills, and others (Carroll et al.,
they will provide the individual. Referrals to 2014). Similar to school, the clinician may rec-
advocates can support families in working with ommend that caregivers meet with a psycholo-
schools to ensure that the individual’s needs are gist, social worker, or other professional with
being met. expertise in behavior management for individuals
Regarding employment, if the individual has with ASD. The focus of the outpatient parent
difficulty obtaining or maintaining a job, the indi- training sessions may be behavior management,
vidual or his/her family may wish to contact conducted through manualized evidence-based
agencies in the community that can provide a parent training programs.
variety of job-related assistance. Some of the ser- To improve responsibility and organizational
vices these agencies provide are job coaching, skills, the clinician may recommend that the indi-
interview preparation, and job previewing. vidual or his/her caregivers create lists of responsi-
Typically, these agencies are state run or non- bilities at home and, if applicable, a planner for
profit, so services may be free or at a reduced school. Being able to create lists and check items
price (depending on qualification for services). off the list as he/she accomplishes tasks will pro-
mote organizational skills and self-monitoring. In
Sleep and Feeding Assessment addition to self-monitoring, the individual with
and Intervention ASD may benefit from having a place at home to
Individuals with ASD typically require interven- relax when upset. This spot should be used to calm
tions for sleep and feeding problems (Beighley, down or deescalate his/her behavior when feeling
Matson, Rieske, & Adams, 2013; Hodge, Carollo, elevated levels of frustration or anxiety. This strat-
Lewin, Hoffman, & Sweeney, 2014). Clinicians egy is unique from time-out procedures that may
should make appropriate recommendations for be implemented as part of behavioral parent train-
feeding and/or sleep, if applicable. For feeding ing. Moreover, the relaxation area should not be
problems, the clinician may refer the individual used as a discipline strategy; rather it should be
or his/her caregivers to a local interdisciplinary used as a way to facilitate effective coping skills.
feeding clinic or their primary care provider. Also, the clinician can recommend that that relax-
Regarding sleep problems, clinicians can recom- ation area is collaboratively identified with the
mend that the individual or their caregiver fol- individual being evaluated and their caregivers,
lows up with their primary care provider or local and only certain items should be available (i.e., not
sleep clinic. If the sleep or feeding problems free access to toys). To ensure successful use of the
appear to be behavioral in nature, the clinician relaxation area, the clinician may recommend that
could recommend outpatient behavior manage- the individual and his/her caregivers practice using
ment or parent training (these will be discussed the area when calm, so that the individual can
further in the next section); however, an appropriate request for it when feeling upset.
4 Report Writing for Autism Spectrum Disorder Evaluations 59

Finally, if available through the individuals provide the names, locations, contact numbers,
insurance, some behavioral services are home and website for each referral source.
based. If so, this opportunity allows many of the As mentioned earlier in the chapter, ASD
previously described services to occur in-home, tends to occur more frequently in people who
increasingly the generalization of skills in that have certain genetic or chromosomal conditions.
setting (Roberts et al., 2011). The clinician ASD also commonly cooccurs with other neuro-
should be familiar with local home-based behav- logical diagnoses. Considering this information,
ioral and outpatient behavioral services and pro- the clinician may recommend that the individual
vide the individual or their caregivers with the being evaluated receives an evaluation to deter-
names, locations, contact numbers, and website mine the presence of related conditions from a
for each referral source. developmental pediatrician or pediatric
neurologist.
Community
A variety of agencies provide services for Social Skills
individuals with ASD in the community set- The clinician should provide recommendations
ting. Clinicians should be familiar with the that enhance the individual’s opportunity to
different agencies within their state and par- socialize with peers and develop appropriate
ticular services. Recommendations for com- social skills. Play dates can be highly recom-
munity supports for individuals with ASD mended, and these play dates may be structured
include support groups for individuals and and facilitated by an adult. If available in the
their family, job-related services (as described community, the clinician can recommend that
previously), vocational training, community individual participates in a peer training program
activities, respite for families, and therapeutic in which typically developing peers are taught
mentors who can work one-on-one with the ways to interact with individuals with social
individual to improve adaptive skills. As skills deficits. The benefits of a peer-tutoring pro-
mentioned in previous sections, the clinician gram include opportunities for the individual
should be familiar with community services learn the appropriate social skills through model-
and provide the individual or their caregivers ing and successful social interactions with peers
with the names, locations, contact numbers, (DiSalvo & Oswald, 2002). Additionally, the cli-
and website for each referral source. nician may recommend that the individual being
evaluated has a specific IEP goal addressing
Medical social skills, with a focus on peer interaction
Clinicians should be prepared to make recom- skills.
mendations for referrals to various medically To address social skill goals in the IEP, the cli-
related services. If the individual being evaluated nician may recommend that the school use a
or his/her caregivers endorsed anxiety or depres- structured social skills assessment, such as the
sion, the clinician may recommend that the indi- Social Skills Improvement System-Rating Scale
vidual or his/her caregiver schedule an (Gresham & Elliott, 2008), to help identify spe-
appointment with a psychiatrist (or their primary cific, measurable social goals for the
care provider) for medication management. IEP. Moreover, the clinician can recommend that
If significant sleep difficulties, motor manner- the individual receives structured social skill
isms, or seizures are present, the clinician may instruction in a small group setting (this could
recommend that the individual receive an evalua- occur at school or in an outpatient clinic setting).
tion by a pediatric neurologist. This recommen- Social skill groups can focus on social pragmat-
dation should encourage the individual and/or ics, initiating and terminating interactions,
his/her family to pursue a referral through his/her responding to others, improving flexible play
primary care provider. The clinician should be skills, and reading social cues and body language.
familiar with local pediatric neurologists and Older individuals may work on developing and
60 B. Belva et al.

maintaining peer interactions. Regardless of age, Sensory and Motor Difficulties


the clinician can also recommend that individuals If the individual with ASD has not received an
with ASD receive structured social skills train- evaluation for their sensory and/or motor
ing, which includes direct instruction, modeling impairments, the clinician may recommend that
(live or video modeling), feedback, role-playing, he/she receive a referral from his/her primary
and social narratives. care provider for an OT and/or PT evaluation.
Finally, if the individual with ASD is shy or These providers can make specific treatment
withdrawn, the clinician can recommend that the recommendations after assessing the individu-
individual receive interventions to promote self- al’s deficits in each of these areas. The clinician
advocacy and assertiveness skills. These skills should be familiar with OT and PT service pro-
will promote communication with teachers, staff, viders and make specific suggestions; however,
and peers and help the individual with complet- the individual’s insurance provider may ulti-
ing tasks, understanding directions, and asking mately dictate service providers on the basis of
for help. coverage. The clinician should provide the indi-
vidual or their caregivers with the names, loca-
Communication Skills tions, contact numbers, and website for each
If indicated in the evaluation, the clinician may referral source.
recommend that the individual receive a speech
and language assessment and therapy. Although Miscellaneous
the individual may receive these services in the Aside from the domain-specific recommenda-
school setting, these services are also available tions that a clinician could provide, there are a
in outpatient clinical settings. SLT services for variety of miscellaneous recommendations that a
young children can focus on developing prag- clinician should consider. If the individual has
matic language and conversation skills (e.g., social-emotional needs, the clinician may include
making eye contact, asking/answering ques- recommendations for school (e.g., scheduled
tions, taking turns, sustaining back-and-forth meetings with school adjustment/guidance coun-
exchanges, staying on topic, listening to selor, noncontingent breaks, check-in system
speaker, understanding humor/sarcasm/nonlit- when experiencing elevated anxiety) and in the
eral language) and teaching skills around non- community. Community-based social-emotional
verbal language (e.g., reading body language recommendations may include outpatient indi-
and social cues). SLT services may also focus vidual psychotherapy. Therapy can focus on
on decreasing scripted or idiosyncratic speech, developing social skills, increasing coping skills,
if applicable. and regulating mood. Specifically, cognitive-
If the individual has a limited verbal reper- behavioral therapy using workbooks such as
toire, an assistive augmentative communication Coping Cat Workbook, Second Edition (Kendall
(AAC) system may be recommended. The AAC & Hedtke, 2006) may be beneficial.
system may be used to promote easily performed Regardless of the program, the focus of ther-
communication skills. The speech-language apy can include discussing and identifying emo-
pathologist can assess to determine the most tions, empathizing with others, and relaxation
appropriate communication system. Examples techniques (e.g., progressive muscle relaxation,
of AAC systems include picture exchange com- diaphragmatic breathing). For higher functioning
munication system, American Sign Language, individuals, therapy can include cognitive strate-
and microswitches. The clinician can recom- gies including visualization, thought challenging,
mend that the individual’s caregiver consult and cognitive restructuring. The clinician may
with a speech pathologist and other service pro- recommend that the individual’s therapist pro-
viders to determine which system to use and vide ongoing progress monitoring of anxiety or
strategies to implement the system consistently depression. In addition to the symptoms of anxiety,
across settings. if the individual endorsed compulsive behaviors,
4 Report Writing for Autism Spectrum Disorder Evaluations 61

the clinician can include recommendations for Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas,
T., Meldrum, D., & Charman, T. (2006). Prevalence of
compulsions as well. These recommendations
disorders of the autism spectrum in a population
include the previously described coping skills cohort of children in South Thames: The Special
and response prevention and exposure. If the Needs and Autism Project (SNAP). Lancet, 368(9531),
individual being evaluated experiences bullying, 210–215.
Beighley, J. S., Matson, J. L., Rieske, R. D., & Adams,
the clinician may provide recommendations for
H. L. (2013). Food selectivity in children with and
outpatient therapy that help with assertiveness without an autism spectrum disorder: Investigation of
and social skills. diagnosis and age. Research in Developmental
Finally, depending on the results of the evalu- Disabilities, 34, 3497–3503.
Bodfish, J. W., Symons, F. J., Parker, D. E., & Lewis,
ation, the clinician can recommend a reevalua-
M. H. (2000). Varieties of repetitive behavior in
tion. The clinician may recommend that young autism: Comparisons to mental retardation. Journal of
children be evaluated during pivotal transitions Autism and Developmental Disorders, 30, 237–243.
(e.g., entry into kindergarten or other large transi- Carroll, D., Hallett, V., McDougle, C. J., Aman, M. G.,
McCracken, J. T., Tierney, E., … Scahill, L. (2014).
tion). The clinician should convey that the reeval-
Examination of aggression and self-injury in children
uation will update assessment results and with autism spectrum disorders and serious behavioral
treatment recommendations. problems. Child and Adolescent Psychiatric Clinics of
North America, 23, 57–72.
Centers for Disease Control and Prevention. (2014).
Prevalence of autism spectrum disorder among children
Conclusion aged 8 years: Autism and developmental disabilities
monitoring network, 11 Sites, United States, 2010.
The increase in the number of individuals diag- Morbidity and Mortality Weekly Report, 63(SS02), 1–21.
Cervantes, P. E., & Matson, J. L. (2015). The relationship
nosed with ASD has implications for the delivery
between comorbid psychopathologies, autism, and
of appropriate diagnostic, intervention, and sup- social skill deficits in young children. Research in
port resources. A National Research Council Autism Spectrum Disorders, 10, 101–108.
(2001) committee estimated that 10 years ago, Chowdhury, M., Benson, B. A., & Hillier, A. (2010).
Changes in restricted repetitive behaviors with age: A
fewer than 1 in 10 children were receiving appro-
study of high-functioning adults with autism spectrum
priate treatment. Therefore, a comprehensive and disorders. Research in Autism Spectrum Disorders, 4,
well-written report is essential for an individual to 210–216.
receive appropriate treatment and interventions in Dapretto, M., Davies, M. S., Pfeifer, J. H., Scott, A. A.,
Sigman, M., Bookheimer, S. Y., & Iacoboni, M.
a variety of settings (Saulnier & Ventola, 2012).
(2006). Understanding emotions in others: Mirror
Comprehensive assessment reports are the sum- neuron dysfunction in children with autism spectrum
mation and culmination of psychological evalua- disorders. Nature Neuroscience, 9(1), 28–30.
tions (Lichtenberger et al., 2004) and should Deckers, A., Roelofs, J., Muris, P., & Rinck, M. (2014).
Desire for social interaction in children with autism
include results from all perspective involved in
spectrum disorders. Research in Autism Spectrum
the evaluation, allowing for a comprehensive for- Disorders, 8, 449–453.
mulation to exist in a single document. Overall, a DiSalvo, C. A., & Oswald, D. P. (2002). Peer-mediated
comprehensive psychological report for individu- interventions to increase the social interaction of chil-
dren with autism. Focus on Autism and Other
als with suspected ASD is essential in order to
Developmental Disabilities, 17(4), 198–207.
provide accurate diagnosis and convey relevant Easson, A., & Woodbury-Smith, M. (2014). The role of
recommendations for treatment. prenatal immune activation in the pathogenesis of
autism and schizophrenia: A literature review.
Research in Autism Spectrum Disorders, 8, 312–316.
Fodstad, J. C., Matson, J. L., Hess, J., & Neal, D. (2009).
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Screening Methods
5
Jonathon M. Campbell, Kirsten A. Scheil,
and Rachel K. Hammond

Introduction General Purpose and Methods


for Screening
As discussed in Chap. 3 of the present volume, the
form and function of assessment depends on the Our working definition of screening is “the pro-
intended purpose of the assessment. Assessment spective identification of unrecognized disorder
may be conducted for the purpose of diagnostic by the application of specific tests or examina-
evaluation, intervention planning, progress moni- tions” (Baird et al., 2001, p. 468). As further
toring, or screening, among others. The goal of our explained in Chap. 3, screening is differentiated
chapter is to provide a general introduction to the from surveillance, developmental monitoring,
purpose and methodology used for screening indi- and diagnostic evaluation. ASD-specific screen-
viduals for the presence of autism spectrum disor- ing involves application of specific procedures as
der (ASD). We situate screening within a larger opposed to general developmental monitoring or
process of diagnostic evaluation and provide an general developmental screening, which may be
overview of approaches to evaluating screening conducted through informal interviewing or
instruments, in general. We briefly review symp- application of a general developmental checklist.
toms that have shown to be predictive of a diagno- It is also critical to understand that screening
sis for ASD for young children, and then we methods and procedures yield data about risk for
selectively review various screening instruments the presence of a disorder as opposed to render-
available for clinical practice. Screening ing a diagnosis.
approaches and measures are then introduced for The utility of a screener is determined by a
older children, including those of school age. The variety of factors, such as its usability with large
chapter emphasizes the impact of base rate on groups and degree of specialized knowledge
screening accuracy and identifies several possible required to administer and score. From a psycho-
approaches to counter the problem of low base metric perspective, screeners are judged by the
rate. Our chapter concludes with general recom- degree of predictive validity or the screener’s
mendations for screening for ASD. capacity to accurately discriminate between the
presence and absence of a disorder. Various indi-
ces exist to capture the accuracy of a screener and
J.M. Campbell (*) • K.A. Scheil • R.K. Hammond
a few are introduced here (see Chap. 3 for more
University of Kentucky, Lexington, KY, USA detailed description and illustration). Overall
e-mail: jonathan.campbell@uky.edu accuracy is the total number of correct outcomes

© Springer International Publishing Switzerland 2016 65


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_5
66 J.M. Campbell et al.

produced by a screener. Sensitivity refers to the children screening positive, 40 are diagnosed
proportion of those with the disorder correctly with autism which yields a PPV of only 0.30.
detected by the screener; specificity refers to the Conversely, of the 865 children screening nega-
proportion of those without the disorder correctly tive, 855 are not diagnosed with autism which
excluded by the screener. Positive Predictive yields a NPV of 0.99. In this example, the
Value (PPV) refers to the proportion of individu- screener yields minimally acceptable sensitivity,
als who screen positive whopare correctly diag- specificity, and overall hit rate; however, the
nosed with the disorder. Negative Predictive screener produces an unacceptably poor PPV. In
Value (NPV) refers to the proportion of individu- our ideal example, all children are screened and
als who screen negative who are correctly subsequently evaluated, a situation that yields a
excluded from having the disorder. A psycho- complete set of accuracy statistics, e.g., all screen
metrically sound screener is one that consistently negative cases complete a diagnostic evaluation
produces sensitivity, specificity, PPV, and NPV despite “passing” the screener. In applied
values that meet or exceed 0.80. research, particularly investigations involving
large sample sizes, follow-up evaluation is cost
prohibitive; therefore, most accuracy statistics
An Example of Screening are known to be inaccurate. Applied research is
also consistently limited by lack of follow-up of
Table 5.1 provides an illustrative example of how children over time, a problem that often affects
screeners may be evaluated and the unique types sensitivity values as more children are subse-
of information produced within a generic screen- quently identified with ASD as they grow older.
ing evaluation model. In our ideal example, Within the screening paradigm, two errors
assume that a screener is administered to a sam- result: false positives and false negatives. Each is
ple of 1000 young children who subsequently associated with untoward outcomes. For false
receive a comprehensive evaluation for the pres- negatives, the screening error does not allow for
ence or absence of ASD. The example also detection of a condition and receipt of appropri-
assumes that the prevalence rate of ASD in this ate intervention and may produce a misleading
sample is 5 %, which exceeds prevalence rates assumption that additional screening is unneces-
reported in the literature, yielding a total number sary in the future. For false positives, the screen-
of 50 children diagnosed with ASD. Based upon ing error wastes time and resources for
the results, the screener produces 135 positive individuals who do not need assessment and
screens from the sample and correctly identifies interventions. False positives may also produce
40 of 50 children with autism, i.e., sensitivity of undue stress for those undergoing additional
0.80. The screener produces 865 negative screens assessment. Given the general purpose of screen-
and correctly excludes 855 of 950 individuals, ing, however, false positives are typically viewed
thereby yielding a specificity of 0.90. Of the 135 as more acceptable errors.

Table 5.1 An example of screening 1000 individuals with base rate of 0.05
Diagnostic result
Screening result Disorder No disorder
Positive True positive 40 False positive 95 PPV 40/135 = 0.30
Negative False negative 10 True negative 855 NPV 855/865 = 0.99
Sensitivity 40/50 = 0.80 Specificity Hit rate
855/950 = 0.90 40 + 855/1000 = 0.90
Note. Sensitivity of test is 0.80. Specificity of test is 0.90. PPV = Positive predictive value; NPV = Negative predictive
value
5 Screening Methods 67

Screening for Autism in Young 4–5 years of age (e.g., Centers for Disease
Children Control [CDC], 2012). Wiggins, Baio, and Rice
(2006) further documented that the average time
Presently, ASD is a neurodevelopmental disorder delay between initial evaluation for developmen-
defined by (a) social-communicative (SC) impair- tal concerns and diagnosis of ASD was
ments and (b) impairing restrictive/repetitive 13 months. Given these findings, it is important
behaviors or interests (RRB) present early in that research and clinical practice continue to
development. Parents often identify concerns focus on reducing the time between initial paren-
about their children’s development in the first tal concerns, age of initial evaluation for ASD,
2 years of life. Concerns are often shared with and age of diagnosis. By screening for ASD in
healthcare providers when children are young children, clinicians have the opportunity
14–18 months old, with some concerns being to promote earlier evaluation, diagnosis, and
conveyed as early as 11 months (Chawarska, access to specialized interventions, which have
Klin, Paul, & Volkmar, 2007; Coonrod & Stone, been shown to improve social, emotional, cogni-
2004). First symptoms often involve language tive, and behavioral functioning in young chil-
delay accompanied by social communication dren with ASD (Dawson et al., 2010; Eaves &
delays or deficits. For example, infants and tod- Ho, 2004).
dler with ASD are often less responsive to their
name being called; have difficulties with eye con-
tact; demonstrate less social smiling; show poor Overview of Screening Measures
imitation skills; or lack imitation skills altogether. for Early Childhood
During children’s early development, caregivers
often report concerns that their child may be deaf Due to the importance of early assessment and
due to the lack of social response to their name targeted interventions for young children with
being called. Early symptoms of ASD also ASD, the field has developed and validated, with
include poor pretend play skills and impairments some success, screening measures designed to
in joint attention, both in its initiation and appro- identify autism-specific symptoms in young chil-
priate response. The social communicative and dren. By utilizing screening tools with young
play difficulties exhibited by many young chil- children, clinicians are better able to identify
dren with ASD are part of the repertoire of typi- children at risk for developmental delays and
cally developing children by the age of 18 months. ASD in order to refer them for more comprehen-
The presence of these symptoms also discrimi- sive evaluations (Meisels, 1985). The current sec-
nates between young children with ASD and tion reviews Level 1 screeners, which are
those with language and developmental delays. designed to identify children at risk for develop-
Early symptoms of RRB include unusual toy mental disorders from unselected, generally low-
play (e.g., repetitive play with toys; lining up risk populations, as well as Level 2 screeners,
toys), repetitive interests (e.g., watching same which are used to differentiate children at risk for
videotape or video clip), and repetitive move- autism versus those at risk for other developmen-
ments (e.g., hand flapping). Approximately one tal disorders.
third of those with ASD experience a period of Screening measures differ in purpose and
developmental regression, whereby acquired usability across settings (Zwaigenbaum & Stone,
skills are lost. Regression is most often reported 2006). Specifically, Level 1 screeners tend to be
in the area of language development and most used commonly in pediatric or primary health-
often during the ages of 20–24 months (Barger, care settings at well-child visits, thus suggesting
Campbell, & McDonough, 2013). Despite the that these screeners should be quick and easy to
presence of early parental concerns and symp- administer and score given the limited time clini-
toms, the average age of diagnosis for ASD diag- cians can typically spend with each child. On the
nosis in the United States is often reported at other hand, Level 2 screeners are used more
68 J.M. Campbell et al.

frequently in community settings that serve chil- for a developmental delay or disorder. Many
dren with a range of disabilities such as early broad developmental screeners play a role in the
intervention programs or diagnostic centers, early identification process; three measures are
which tend to have more time to conduct more briefly reviewed in this section. Two widely used
interactive, time-consuming evaluations. Despite general developmental measures are the Ages
the differences in the types of screeners, research- and Stages Questionnaire, Third Edition (ASQ-3;
ers have suggested that multilevel models of Squires & Bricker, 2009) and the Parents’
screening and a combination of screening tools Evaluation of Developmental Status (PEDS;
may be more effective than a single screener in Glascoe, 2003). A third tool, the Infant/Toddler
some cases (Miller et al., 2011; Roux et al., Checklist (ITC) component of the Communication
2012). For example, a risk-prevention model, in and Symbolic Behavior Scales Developmental
which Level 2 interactive screeners are used to Profile (CSBS DP; Wetherby & Prizant, 2002),
assess children identified as at risk for autism focuses more specifically on children’s commu-
during Level 1 screening, is designed to increase nication and symbolic functioning.
children’s access to earlier, specialized interven-
tions (Ibañez, Stone, & Coonrod, 2014). Ages and Stages Questionnaire, Third
Edition
The Ages and Stages Questionnaire, Third
Level 1 Screening Measures Edition (ASQ-3) is a 30-item parent-report mea-
sure designed to examine developmental func-
In order to identify children at risk for ASD tioning in children ages 1–66 months in the
within the general population, two approaches following five domains: communication, fine
can be used. One strategy, referred to as general motor, gross motor, personal-social, and problem
developmental screening, identifies children at solving (Bricker & Squires, 1999; Squires &
risk for a variety of developmental problems Bricker, 2009). The ASQ-3 includes age-specific
including ASD. In contrast, Level 1, autism- questions and identifies children as “at risk,” “not
specific screeners are used to screen the general at risk,” or in the “monitoring zone,” which indi-
population to identify ASD symptoms within a cates their development should continue to be
child’s overall developmental profile. In the fol- monitored over time. For risk classification, the
lowing section, both types of Level 1 screening ASQ-3 has high test-retest reliability (0.92) and
measures are described, including brief overview inter-rater reliability (0.93). Sensitivity ranges
of validity and reliability information presented from 0.83 to 0.89 and specificity ranges from
in peer-reviewed publications. 0.80 to 0.92 across ages (Squires & Bricker,
2009). Overall, the ASQ-3 seems to screen
General Developmental Screening appropriately for overall general developmental
Researchers have found that most (82 %) of pedi- functioning; however, it will not identify specific
atricians screen for general developmental cases of ASD or ASD symptoms, such as joint
delays; however, less than half of these pediatri- attention or interest in peers.
cians utilized validated procedures (dosReis,
Weiner, Johnson, & Newschaffer, 2006; Self, Parents’ Evaluation of Developmental
Parham, & Rajagopalan, 2014). It is crucial for Status
healthcare providers who service young children The Parents’ Evaluation of Developmental Status
to use general developmental screeners in order (PEDS is a brief, 10-item yes/no parent question-
to identify children with cognitive, language, or naire that assesses developmental concerns for
social delays. By using general developmental children ages 1–95 months in the following five
screening measures, healthcare providers can domains: global/cognitive, expressive language,
make referrals to specialty clinics or early inter- receptive language, social-emotional, and other
vention centers if children are identified as at risk (Glascoe, 1998, 2003). Responses to the PEDS
5 Screening Methods 69

are divided into “predictive” or “non-predictive” The ITC component of the CSBS DP is a
concerns. The PEDS was validated on a sample standardized instrument, consisting of 24 yes/no
of 771 children ages 0–8 from urban, rural, and parent-report items and one open-ended parent
suburban areas across the United States. concern question. Specifically, parents are asked
Sensitivity ranges from 0.74 to 0.79 while speci- to describe their child’s developmental concerns
ficity ranges from 0.70 to 0.80. Currently, mixed if they answer “yes” to the following question:
findings have been reported regarding the PEDS’ “Do you have any concerns about your child’s
ability to identify children at risk for ASD among development?” The ITC screens for deficits in
the general population. One group of researchers communication and symbolic skills among
found that the PEDS failed to identify a large por- 6–24-month-old infants (Wetherby et al., 2008;
tion of children who were identified using the Wetherby & Prizant, 2002). The ITC not only
Modified Checklist for Autism in Toddlers features screening cutoff scores but also has
(M-CHAT; Robins, Fein, Barton, & Green, related standard scores at monthly intervals based
2001), which is an autism-specific screener. In on a normative sample of 2188 children ages
conclusion, the PEDS meets the recommended 6–24 months (Wetherby & Prizant, 2002). In one
psychometric properties for a general develop- study, Wetherby et al. (2004) examined the valid-
ment screener, and it has been standardized and ity of the ITC in detecting communication delays
validated as well as used commonly in settings in over 3000 children ages 6–24 months who
that serve young children. Future research should were screened from a general population sample
continue to explore the usability and psychomet- as part of the FIRST WORDS® Project. The fol-
ric properties of the PEDS as it relates to the lowing two samples were asked to receive further
identification of ASD. evaluation using the CSBS DP Behavior Sample
after they were initially screened with the ITC:
Infant Toddler Checklist (a) children who scored in the bottom tenth per-
Another tool focused on identifying children at centile on the ITC and (b) randomly selected
risk for language, social communication, and children functioning within normal limits on the
general developmental delays is the ITC. After further evaluation, children were diag-
Communication and Symbolic Behavior Scales nosed with ASD, diagnosed with developmental
Developmental Profile (CSBS DP; Wetherby delay, or identified as typically developing.
et al., 2004; Wetherby & Prizant, 2002). Based When the ASD and DD groups were com-
on Wetherby and Prizant’s (1993) work, the bined together and compared to the typically
CSBS DP is comprised of three separate mea- developing group, sensitivity was estimated to be
sures that can be used for a variety of purposes 88.9 %. However, sensitivity increased to 94.4 %
depending on the setting and particular needs of when the ASD group was solely examined with
the population. The Infant/Toddler Checklist the typically developing group. Overall specific-
(ITC) is reviewed here as it is considered to be a ity was 88.9 %. Thus, the ITC had good sensitiv-
broad, population screener, and the other two ity and specificity to be used as a general
tools, the CSBS DP Caregiver Questionnaire and population screener for developmental abnormal-
the CSBS Behavior Sample, are follow-up ities, including ASD and other DDs. More
assessment measures typically employed after recently, researchers used similar procedures as
children have been previously identified. For a Wetherby et al. (2004) to further validate the
comprehensive review of these two measures, ITC. Results suggested that the ITC is valid for
refer to Wetherby and Prizant (2002). Based on screening children ages 9–24 months, but it fails
standard scores across a 4-month interval for a to accurately assess parental concerns at
normative sample, the CSBS DP has internal 6–8 months (Wetherby et al., 2008). Specifically,
consistency ranging from 0.86 to 0.92 and good the PPV and NPV, which were above 70 %, both
test-retest reliability (Wetherby, Brosnan- support validity of the ITC for children
Maddox, Peace, & Newton, 2008). 9–24 months; however, the false negative rate
70 J.M. Campbell et al.

was high for 6- to 8-month-old infants. Level 1 Autism-Specific Screening


Additionally, less than half of the parents in the In order to identify unique behavioral symptoms
sample reported concerns between 6 and indicative of ASD, Level 1, autism-specific mea-
15 months; however, 75 % reported concerns sures have been developed for screening general
between 21 and 24 months. populations. The American Academy of
Currently, a positive screen on the ITC does Pediatrics (AAP) recommends that these mea-
not necessarily differentiate children with ASD sures be used at 18- and 24-month preventive
from those with other developmental problems; pediatric healthcare visits (Johnson & Myers,
however, some researchers suggest the ITC is 2007); however, pediatricians often do not screen
more capable of screening a heterogeneous sam- for ASD and, if they do, they often do not adhere
ple of children with ASD that is more inclusive of to the AAP guidelines (e.g., Self et al., 2014).
high-functioning individuals. Specifically, the Comprehensive reviews of published autism-
ITC was able to identify children with higher specific screeners are available to supplement our
composite scores and greater variability on the review (Mawle & Griffiths, 2006; Robins &
Mullen Early Learning Scales (Wetherby et al., Dumont-Mathieu, 2006); select peer-reviewed
2008) than were identified in a lower-scoring Level 1 autism-specific screeners are reviewed in
sample screened using another parent-rated the following section.
screener (Kleinman et al., 2008). If children
screen positive on the ITC screener, then clini- Checklist for Autism in Toddlers
cians may consider referral for further communi- Over two decades ago, Baron-Cohen, Allen, and
cation evaluation using the CSBS Behavior Gillberg (1992) developed the Checklist for
Sample or an autism-specific Systematic Autism in Toddlers (CHAT), which was the first
Observation of Red Flags for Autism (SORF). If autism-specific measure designed for general
children screen negative on the ITC, then they population screening during 18-month-year olds’
should consistently participate in developmental routine healthcare visits. The CHAT is a nine-
screening every 3 months until age 24 months item parent-report measure combined with five
(Wetherby et al., 2008). Future research should items to be observed by health professionals. The
continue to examine the validity of the ITC in CHAT samples children’s functioning in several
determining which children should receive ASD areas, with particular focus on early signs of
diagnoses within a large, general sample. ASD, such as gaze monitoring, use of protodec-
larative pointing (i.e., initiating joint attention),
Summary and pretend play (Baron-Cohen et al., 1992). In
Although differences in population makeup and the first publication establishing the CHAT’s psy-
sampling may explain various results, general chometric properties, the measure was used to
consensus suggests that broad-based measures do screen 50 infants during routine, 18-month
not sufficiently identify all children who may be checkups as well as a sample of 41 young sib-
at risk for ASD. Thus, general developmental lings of children with autism, a high-risk sample
screeners should be utilized in pediatric primary (Baron-Cohen et al., 1992). Using a cutoff crite-
care settings to identify children for a range of ria of failing two or more skill areas, the CHAT
developmental concerns; however, they do not correctly identified four children who were later
seem to replace first-stage, autism-specific mea- diagnosed with ASD while none of the typically
sures. If general developmental measures are to developing siblings were identified using the
be used as first-stage screeners, further research CHAT.
is needed to validate their use in detecting chil- A later study used the number of passes and
dren with ASD and other DDs. Currently, the failures within each of the three domains to place
most accurate approach is to use a broadband 16,000 18-month children into one of three
measure followed by an ASD-specific tools when groups: Autism, Developmental Delay (DD), or
screening children ages 18–24 months in the Typically Developing (Baron-Cohen et al., 1996).
general population (Ibañez et al., 2014). Out of the 12 children placed in the Autism
5 Screening Methods 71

group, ten later received a diagnosis of autism children such as repetitive behaviors, which are
and two received a diagnosis of DD, which were not included on the CHAT. The following six
confirmed 3.5 years after initial evaluations. A critical items are included on the M-CHAT: pro-
follow-up study conducted 6 years later todeclarative pointing, following a point, show-
rescreened the sample and established scoring ing objects, imitation, interest in other children,
thresholds for groups identified as either high or and response to name (Robins et al., 2001).
medium risk for autism (Baird et al., 2000). The Internal consistency reliabilities for the entire
high-risk criteria required children to fail items screener (a = 0.85) and six critical items (a = 0.83–
about protodeclarative pointing and pretend play 0.84) are adequate (Kleinman et al., 2008; Robins
on both parent and observer portions of the et al., 2001). A Chinese version of the M-CHAT,
CHAT as well as gaze monitoring items when known as the CHAT-23, has recently been devel-
observed by the clinician. However, the medium- oped; however, the measure should continue to
risk criteria required children to fail the protodec- be examined for its utility across settings and in
larative pointing parent and observer portions but other countries (Wong et al., 2004). The English
pass one of the other items. version of the M-CHAT is reviewed in the fol-
Using the high-risk criteria, the CHAT identi- lowing section.
fied 10 of 50 children with ASD in the population To examine initial psychometric properties of
sample of 16,235. As such, the CHAT produced a the M-CHAT, 1122 children were screened in
sensitivity of 0.20 and specificity of 0.998. Using primary care settings and 141 children in early
medium-risk criteria, sensitivity was 0.38, speci- intervention sites using the M-CHAT screener
ficity was 0.98, and the PPV was 0.05. When (Robins et al., 2001). Robins et al. (2001) utilized
children were screened twice using the CHAT, follow-up interviews to confirm the presence of
the PPV increased to 0.75 and the sensitivity symptoms in children who met the cutoff criteria,
decreased to 0.18 (Baird et al., 2000). Although which were either failing two or more critical
the CHAT identified some children who later items or failing any three items. Children who
received diagnoses of ASD, it did not identify a failed the screener after the interview participated
majority of the children. Overall, the poor sensi- in further evaluation. In this sample, 58 children
tivity and high false negative rates associated received evaluations, 74 parents completed fol-
with the CHAT suggest that future research is low-up interviews that did not end in their chil-
needed to determine its effectiveness in screening dren failing the M-CHAT, and 1161 children did
for ASD symptoms in 18-month-old infants. not require follow-up interviews.
Additionally, the CHAT may not represent the Most children diagnosed with ASD were
ideal screening tool for all settings as it requires referred from early interventionists, indicating
both clinician observation of children’s behaviors the sample was initially a high-risk group. Results
and parental report. varied depending on the cutoff criteria (i.e., fail-
ing two critical items or three total items) as well
Modified Checklist for Autism in Toddlers as whether or not children who passed after fol-
The Modified Checklist for Autism in Toddlers low-up interviews were labeled as false positives.
(M-CHAT) is a modified version of the CHAT Initial results, which examined the checklist and
adapted for use as a Level 1 screener in pediatric follow-up interview combined, revealed sensitiv-
settings in the United States (Robins et al., 2001). ity ranging from 0.95 to 0.97, specificity ranging
The M-CHAT consists only of parent-rated items; from 0.95 to 0.99, PPV from 0.36 to 0.80, and
however, physicians can “flag” the screener when NPV reported at 0.99 (Robins et al., 2001).
they suspect autism despite responses on the par- Another study examined the M-CHAT by
ent checklist. The M-CHAT is comprised of 23 screening 3309 children in a low-risk sample at
questions, including nine items from the parent- well checkups and 484 children in a high-risk
report CHAT and 14 other items specifically sample who were either referred by specialists
related to symptoms of autism present in young for further evaluation or screened by early
72 J.M. Campbell et al.

intervention providers (Kleinman et al., 2008). Revised, with Follow-Up (M-CHAT-R/F; Robins,
Identical to Robins et al. (2001) initial results, the Fein, & Barton, 2009), was developed to allow
PPV of the entire sample was 0.36; however, the physicians to review responses on the M-CHAT-R
PPV of the low-risk sample alone was 0.11 com- checklist with parents in greater detail. The fol-
pared to 0.60 for the high-risk sample. When low-up interview serves as a Level 2 screener
examining the children whose initial failed within the M-CHAT-R/F screener and it is dis-
screens were confirmed during follow-up inter- cussed in the Level 2 screening section. In con-
views, the PPV of the entire sample rose to 0.74. clusion, mixed results regarding the sensitivity
Similarly, the PPVs of both groups (low risk— and specificity of the M-CHAT suggest that
0.65; high risk—0.76) also increased when solely future research should continue to provide sup-
including the children whose responses on the port for the utility, reliability, and validity of this
screener were confirmed via interview. When common autism-specific Level 1 screener.
children were rescreened and re-evaluated at However, the M-CHAT is the most commonly
around age 4, seven children were diagnosed used and researched tool for screening for ASD
with autism who did not fail the M-CHAT screen in the general population.
at a younger age (Kleinman et al., 2008). Thus,
seven false negatives were identified out of the Pervasive Developmental Disorders
total sample of 1416 from combined low- and Screening Test, Second Edition
high-risk samples when children’s symptoms The Pervasive Developmental Disorders
were monitored in longitudinal studies. Screening Test, Second Edition (PDDST-II) is a
In a large, recent follow-up study, 18,989 parent-report screening measure for autism and
toddlers between the ages of 16 and 30 months other pervasive developmental disorders designed
were screened during well-child visits for children ages 12- to 48-months old (Siegel,
(Chlebowski, Robins, Barton, & Fein, 2013). Of 2004). The PDDST-II is comprised of three forms
the 1737 children who screened positive on the that include both Level 1 and Level 2 screeners as
initial M-CHAT, 74.6 % participated in the fol- well as an additional form; the appropriate form
low-up interview, and 1023 children screened is selected depending on the proposed purpose of
negative after the interview. However, 272 con- the screener. Depending on clinical use, three
tinued to screen positive after the phone inter- PDDST-II forms exist: (a) a Stage 1—Primary
view and were referred for further evaluation. Care Setting form, (b) a Stage 2—Developmental
The PPV for the initial M-CHAT screening alone Clinic Setting form, and (c) a Stage 3—Autism
was 0.06, and the PPV was 0.53 for the M-CHAT Clinic Severity Setting form. Each stage is asso-
combined with the follow-up phone interview. ciated with varying cutoff scores and can be used
Overall, results indicate that it is crucial to com- in conjunction or individually.
bine the M-CHAT screener with a follow-up tele- The Primary Care Setting (PCS) form, which
phone interview to reduce false positive and consists of 22 parent-report items, is most likely
avoid unnecessary referrals and parent concerns to be utilized by general pediatricians and pri-
(Chlebowski et al., 2013; Kleinman et al., 2008). mary care physicians to identify 12- to 48-month-
This factor is especially important in settings that old infants at risk for autism (Siegel, 2004).
serve large numbers of families, thus leaving When 681 children at risk for ASD and 256 chil-
healthcare providers with limited time and dren with other developmental disorders were
resources to spend on each child. screened using the PCS, sensitivity and specificity
The use of a brief, follow-up interview, either were found to be 0.92 and 0.91 (Siegel, 2004).
on the phone or in person at a healthcare provid- The Developmental Clinic Setting (DCS) form
er’s office, improves accurate referral for further includes 14 items that can be used to identify
diagnosis and screening for suspected children in specialized developmental settings
ASD. Recently, a revised version, referred to as who are more likely to have autism than a range
the Modified Checklist for Autism in Toddlers— of other developmental disorders. When the DCS
5 Screening Methods 73

form was used to compare functioning of 490 screening. Even for measures, such as the
children diagnosed with ASD to 194 diagnosed M-CHAT, that have generated promising psy-
with other disorders, sensitivity and specificity chometric support, there are limitations associ-
were found to be 0.73 and 0.49, respectively, ated with imperfect measures designed to
when an associated cutoff score of 5 was utilized identify relatively low base rate disorders, such
(Siegel, 2004). as ASD. The impact of low base rate is discussed
Lastly, the Autism Clinic Severity Setting further in subsequent sections of the chapter.
(ACSS) form consists of 12 items that assess early To address potential concerns and reduce false
symptoms to predict severity levels of ASD. When positives, healthcare providers should follow-up
the ACSS form was used to compare 355 children with parents whose children fail the screening by
with ASD to 99 children with either PDD-NOS or reviewing any flagged items or concerns.
Asperger’s disorder, sensitivity and specificity Additionally, clinicians should continue to screen
were found to be 0.58 and 0.60, when an associ- children for developmental concerns that may
ated cutoff score of eight was utilized. The Level 1 arise in the future despite passing an initial
PCS form correctly classified over 90 % of cases; screening. Overall, the M-CHAT and M-CHAT-R
however, the sample presented in the manual was serve as the strongest Level 1 autism-specific
a selected sample of children at high risk at the tool; however, the Level 2, follow-up interview
time of screening. Thus, the PCS form of the (i.e., M-CHAT-R/F) should be included as part of
PDDST-II should be validated by screening chil- the initial screening to confirm positive screens.
dren in the general population rather than those The follow-up interviews can take place over the
who have already been identified as at risk to be phone or in physicians’ offices, especially if an
fully endorsed as an appropriate Level 1 screener. electronic version of the M-CHAT is utilized.
Additionally, the sensitivity and specificity of the The electronic version of the M-CHAT, which
DCS form fall below generally acceptable levels has been researched preliminarily in a primary
for a screener; therefore, the DCS needs additional care setting (Harrington, Bai, & Perkins, 2013),
validation before it is recommended as a Level 2 is unique in that it can be scored instantly,
screener. Overall, additional studies exploring the enabling physicians to conduct follow-up ques-
psychometric properties and usability of the entire tioning at the same time as the developmental
PDDST-II rating system are needed prior to its screening and well-child visits.
endorsement.

Summary Level 2 Screening Measures


Many children falsely identified by autism-
specific screeners meet criteria for other devel- The following section contains a brief overview
opmental delays; therefore, children without of measures designed to identify children with
ASD but other delays may benefit from early autism after developmental concerns have already
screening using ASD-specific or broad-based been noted. Level 2 autism-specific screeners are
tools. Young children should be screened for most commonly used in community settings,
ASD at 18- and 24-month checkups as well as such as early intervention centers or evaluation
whenever parental concerns are expressed. When clinics, to help differentiate children at risk for
examining sensitivity and specificity, some of autism from those at risk for other disorders.
the measures (i.e., M-CHAT and M-CHAT-R/F) Peer-reviewed, published measures that utilize a
appear promising; however, results of many variety of formats (i.e., follow-up interviews,
studies are difficult to generalize. For example, standardized observations, rating scales) are
some studies included high-risk samples when reviewed in this section. The rating scales are
assessing general population screeners, failed to relatively easy to score and administer while
validate cutoff criteria before conducting stud- standardized observations tend to be more time-
ies, and refrained from following up with children consuming and require a higher level of clinician
who passed the screeners after their initial training.
74 J.M. Campbell et al.

Modified Checklist for Autism rating form, follow-up interview, and scoring
in Toddlers: Revised/Follow-Up software are also freely available at: www.
As discussed above, the M-CHAT is one of the mchatscreen.com.
most commonly used Level 1 screeners; how-
ever, research suggests clinicians should utilize Screening Tool for Autism in Toddlers
the follow-up interview to reduce false screens The Screening Tool for Autism in Toddlers
using the M-CHAT alone (Chlebowski et al., (STAT) is a Level 2 screener involving a 20-min,
2013). The Modified Checklist for Autism in play-based interactive session with children ages
Toddlers—Revised/Follow-up (M-CHAT-R/F) is 24 to 36 months (Stone, Coonrod, & Ousley,
a two-step screener for detecting symptoms of 2000; Stone, Coonrod, Turner, & Pozdol, 2004).
ASD in children ages 16 to 30 months. Although The 12 items administered during the session
the M-CHAT-R/F is similar to the M-CHAT assess the four following domains of social com-
(Robins et al., 2001), several changes have been munication: play (two items), motor imitation
incorporated including dropping three items that (four items), directing attention (four items), and
performed poorly, reorganizing the placement of requesting (two items). Assessment of the four
items, simplifying language, and clarifying items domains does not require language comprehen-
by using examples and adding context. In present sion, and the domain scores are equally weighted
form, the M-CHAT-R/F has 20 items and classi- and combined to derive a total score ranging from
fies children at low (total score <3), medium 0 to 4, with higher scores representing more
(total score 3–7), or high risk (total score ≥ 8) for impairments and a cutoff score of 2 indicating
autism based on parental responses (Robins “risk for ASD.”
et al., 2009). If children are classified as medium To assess the validity of the STAT, Stone et al.
risk at initial M-CHAT-R/F screening, the follow- (2000) randomly assigned 24- to 35-month-old
up interview can be completed via telephone or children to one of two groups: (a) a development
in person to confirm failed items (Robins et al., sample and (b) a validation sample. The devel-
2009). Children who continue to be classified as opment sample consisted of seven children with
medium risk after interviews should be referred ASD and 33 with disorders other than ASD
for further diagnostic evaluation. However, chil- while the validation sample included 12 children
dren initially classified as high risk should imme- with ASD and 21 with other disorders. When
diately be referred for further evaluation and/or diagnosis based on DSM-IV criteria was used as
early intervention services. the standard, the sensitivity and specificity of the
Robins et al. (2014) report that 7 % of 16,071 development sample were 1.00 and 0.91, respec-
children fell into medium or high risk compared tively. Examination of the validation sample
to 9 % of children on earlier versions of the alone yielded sensitivity and specificity of 0.83
M-CHAT. The overall autism detection rate was and 0.86, as well as PPV of 0.77 and NPV of
higher for the M-CHAT-R/F (67 cases per 10,000 0.90. When subgroups of children with and
screened) than for the earlier version (45 cases without autism were created and matched on
per 10,000 screened). Overall, the modified mental age, the sensitivity and specificity were
instrument seems to have several advantages both 0.83.
over the earlier versions; however, preliminary Using a similar approach as above, Stone
data suggest that the screening performance of et al. (2004) matched two groups consisting of 26
the M-CHAT-R/F does not differ significantly children with autism and 26 children with other
from the original version as long as the follow- developmental delays or language impairments.
up interview is utilized (Robins et al., 2014). These children were randomly assigned to either
Future research is needed on the M-CHAT-R/F if a developmental sample or validation sample to
it is intended to replace the original M-CHAT in further examine the validity of the STAT. The
primary healthcare settings. The M-CHAT-R/F authors used clinical diagnosis as the standard to
5 Screening Methods 75

create cutoff scores for the development sample Other Level 2 Measures
before testing the cutoff criteria on the valida- Two measures are briefly reviewed in this
tion sample. Using this approach, the validation section; more information on their psychometric
sample produced a sensitivity of 0.92, speci- properties and use can be found in Ibañez et al.’s
ficity of 0.85, PPV of 0.86, and NPV of 0.92. (2014) review. The Childhood Autism Rating
Concurrent validity of the STAT was examined Scale (CARS; Schopler, Reichler, DeVellis, &
through agreement with the Autism Diagnostic Daly, 1980; Schopler, Reichler, & Renner, 1988)
Observation Schedule—General by compar- is a 15-item behavioral rating scale that can be
ing STAT risk category (i.e., ASD risk/no risk) completed via combinations of three methods:
to ADOS-G diagnosis (i.e., ASD/no ASD). The (a) direct observation, (b) caregiver report, and/or
resulting Cohen’s kappa of 0.77 and 89 % agree- (c) review of charts and records. The CARS was
ment between the measures provided support for developed using a sample of 1500 children of
the validity of the STAT. Inter-rater agreement, which more than half were under the age of 5
as measured by Cohen’s kappa, was 0.88 for (Schopler et al., 1988). A CARS total score is
risk category when 30 children were assessed. calculated by summing scores for each item,
Additionally, test-retest reliability was 0.88 which are on a seven-point scale, with mid-
when 18 children were screened by two different points, ranging from normal behavior (1) to
examiners 2–3 weeks apart, and the correlation severely abnormal behavior (4). Total scores on
between the STAT scores across both times was the CARS place children into one of three groups:
0.85 (Stone et al., 2004). autism range (≤30), mild to moderate autism
Although the STAT was initially developed (30–36.5), and severe autism (37–60). For chil-
and validated on children ages 24 to 36 months of dren and adults with severe autism, the sensitivity
age, exploratory research suggests that the STAT of the CARS ranges from 0.92 to 0.98 (Eaves &
may be suitable for children under the age of 2 Milner, 1993; Sevin, Matson, Coe, & Fee, 1991).
(Stone, McMahon, & Henderson, 2008). However, less is known about the psychometric
Researchers examined the validity of the STAT properties of the CARS when screening young
for screening 71 children in a high-risk sample children for ASD. For example, one study found
below 24 months of age, of which 59 had an older sensitivity and specificity to be 0.94 and 0.85,
sibling with ASD and 12 who were referred for respectively (Perry, Condillac, Freeman, Dunn-
evaluation for suspected ASD. In this study, the Geier, & Belair, 2005). Another group of
original STAT cutoff score of 2 for “at risk” was researchers suggested that increasing the cutoff
increased to 2.75 in order to maintain adequate score from 30 to 32 when assessing children as
sensitivity and specificity for children young as 2 years old improved specificity from
12–23 months. The revised cutoff score produced 0.49 to 0.81 while sensitivity, PPV, and NPV val-
a sensitivity of 0.95, specificity of 0.73, PPV of ues remained acceptable at 0.79, 0.85, and 0.73,
0.56, and NPV of 0.97. When 12–13-month-olds respectively.
were removed from the sample due to high false The new CARS-2 includes a form identical to
positives rates (38 %), the sensitivity was 0.93, the initial CARS referred to as the CARS-2-ST
specificity was 0.83, PPV was 0.68, and NPV as well as a high-functioning version (CARS-
was 0.97. Thus, the PPV and specificity improved 2-HF) for children over the age of 6 with an
when younger infants were excluded from the IQ of 80 or above (Schopler, van Bourgondien,
sample while the NPV and sensitivity remained Wellman, & Love, 2010). Using a cutoff score
acceptable. Preliminary evidence suggests that of 28, the CARS-2-HF had a sensitivity of 0.81
the original STAT may be used to screen children and a specificity of 0.87. The internal consistency
under 2 years old; however, results need to be of the CARS-2-ST and CARS-2-HF is 0.93 and
validated in larger samples and cutoff scores need 0.96, respectively. Further research is needed
to be validated for younger children. to determine the psychometric properties of the
76 J.M. Campbell et al.

newly developed CARS-2 forms for Level 2 items is necessary to further support that the
screening. The CARS-2-HF form is of particular SORF is a useful interactive, Level 2 ASD-
interest as this is designed for higher functioning specific screener. Currently, preliminary findings
individuals. suggest that the SORF could serve as a physician-
Another measure that has the potential to administered screener to further screen young
serve as an interactive, Level 2 autism screener is children who have already been identified as at
the Systematic Observation of Red Flags risk using general population screeners such as
(SORF), which is a component of the CSBS DP the ITC. The length of time to complete the
(Wetherby et al., 2004; Wetherby & Prizant, observation and scoring, however, may make the
2002). As part of the CSBS DP, the ITC identi- SORF time prohibitive.
fies children who are at risk for communication
delays, and these children may complete the Summary
CSBS DP Behavior Sample, which involves a While Level 1 autism-specific screeners are
10-min warm-up before the 30–40 min video- intended to screen infants and toddlers under
taped, interactive session. While reviewing 30 months, many Level 2 screeners focus on
recorded behavior samples, clinicians can com- slightly older children. In particular, the STAT
plete the 29 items of the SORF that assess chil- and the SORF exist as interactive, Level 2 screen-
dren’s social, emotional, and communication ers that provide clinicians with the opportunity to
functioning as well as repetitive behaviors and directly observe young children’s language, com-
restricted interests. Items require clinicians to munication, and social skills. By utilizing direct
use a 3-point scale to rate the presence of atypi- observation rather than relying solely on parent
cal behaviors and absence of typical behaviors, checklists, clinicians can supplement parent
and the total SORF score is determined by add- report with clinical observation. Clinicians can
ing the ratings for each item. Thus, higher scores use their assessment of children’s strengths and
indicate more red flags for ASD. weaknesses to help inform potential diagnosis
To assess psychometric properties and usabil- and future targeted interventions. However, these
ity of the SORF, researchers assessed 54 children interactive measures require clinician training in
ages 25–65 months who later fell into one of administration and scoring, which can be cost
three categories: children with ASD (n = 18), prohibitive for clinics that serve a large number
children with developmental delays (DD) of children and families.
(n = 18), or typically developing (TD) children Research supports the combined use of parent-
(n = 18) (Wetherby et al., 2004). Inter-rater reli- report screeners and interactive tools to help
ability was calculated for each of the 29 items, identify at-risk children and yield referral for
and mean percentage agreement was 97.1 %. comprehensive evaluation. When choosing
Initial research identified nine items on which screening measures, clinicians should consider a
children with ASD differed from those with DD variety of factors such as service delivery setting,
or TD. A more recent study used the SORF to level of training necessary to administer the
reanalyze archived video samples from 150 chil- screener, cultural and linguistic needs of their
dren who were diagnosed with ASD (n = 60), DD population, and appropriate planning for han-
(n = 30), or were TD (n = 60), including the 54 dling referrals in the presence of positive screens,
children from the previous study (McCoy, among others. Using combinations of Level 1
Wetherby, & Woods 2009). Children with ASD and Level 2 screening tools when assessing chil-
differed from DD and TD counterparts on 20 dren is generally more effective than utilizing one
behaviors, with medium to large effect sizes doc- single measure at a single point in time. Further
umented, compared to the nine items identified in research should be conducted on Level 2 screen-
previous research. Using a cutoff score of 8, sen- ers as most have recently been developed and
sitivity was 0.87 and specificity was 0.84. Further limited published psychometric data exists on the
validation of cutoff scores and critical red-flag measures. Also, there is only limited evidence
5 Screening Methods 77

available regarding how different screeners com- general developmental screening until 30 months
pare with each other as well as how screeners (i.e., 9, 18, and 30 months). As children enter
may be utilized with various groups, such as fam- preschool and formal education, schools become
ilies from low socioeconomic status, parents with more central to the screening process. Although
low literacy levels, and families whose primary academic attainment is typically considered the
language is not English. primary role of schooling, social-emotional and
behavioral adjustment, particularly as difficulties
with adjustment affect children’s educational
Screening for Autism Spectrum performance, also falls under the responsibility
Disorder in Middle Childhood of schools. The rationale for screening holds true
and School-Age Children within school settings as well, chiefly, that earlier
detection of unidentified problems leads to ear-
Despite increased efforts toward identification of lier access to services and, ultimately, outcomes.
ASD in early childhood, there are many children Screening for ASD in school settings is possible
who will not be identified with ASD until they through various routes and service delivery mod-
reach middle childhood and school age. For els. For example, federal law requires that schools
example, recent data from a large study in the engage in child find procedures to identify stu-
Netherlands indicated that 20 % of children were dents with developmental, educational, language,
first identified by school professionals (Burke, and behavioral difficulties. Further, schools are
Koot, & Begeer, 2015). Age of diagnosis has moving toward implementing service delivery
been somewhat dependent on level of function- models, such as Response to Intervention (RTI),
ing (e.g., with more cognitively able individuals which incorporate tiered levels of intervention
diagnosed later); however, Mandell et al. (2010) for academic and behavioral concerns.
reported that the average age of ASD diagnosis Universal screening is a key component for
was 5 years. Research has also documented that RTI models and is defined as the systematic
children from impoverished or minority back- assessment of all children within a class, grade,
grounds are more likely to be diagnosed later school, and/or district on academic and behav-
when compared to their counterparts (e.g., Lipatk ioral areas identified as important by the school
et al., 2008). Thus, the need for efficient and reli- and community at large (Ikeda, Neessen, & Witt,
able screening measures is crucial with this age 2008). Typically, universal academic screeners
group, particularly in light of the missed opportu- are used more frequently than behavioral screen-
nity to benefit from specialized interventions in ers, due, in part, to concerns with potential overi-
early childhood. In contrast to the early child- dentification of various behavioral problems that
hood screening literature, less is known and may overwhelm existing resources (see Campbell
available related to screening for ASD in older & Hammond, 2014). To our knowledge, proac-
children and school-age children. Due to the con- tive ASD screening does not typically occur
cerns of later diagnoses for children from minor- within schools. Even so, ASD screeners could be
ity or low income backgrounds, Burke et al. implemented within a multi-tiered framework,
(2015) also noted, “as a first and frequent point of although the utilization of general autism screen-
contact for children, their [school professionals’] ers with school populations (i.e., akin to Level 1
objectivity and accuracy is imperative in early screening) has not been widely studied. Williams
identification of ASDs and specifically amongst and Brayne (2006) concluded that no ASD
children from ethnic minority groups” (p. 113). screening test has been fully validated for the
Therefore, it is important for practitioners to be general population of school-age children.
aware of ASD screeners available for use with Hammond, Campbell, and Ruble (2013)
school-age children. described a basic model which could be inte-
AAP guidelines recommend ASD screening grated into the existing screening or tiered inter-
until 24 months (i.e., both 18 and 24 months) and vention process in the school to identify students
78 J.M. Campbell et al.

with ASD. Noland and Gabriels (2004) also teria for ASD after formal diagnostic evaluation.
articulated a model for screening and identifying Additional research is needed on issues of poten-
children with ASD within public school settings. tial bias and under identification of ethnic minor-
Noland and Gabriels’ model involves a seven- ities, gender, and those from low income
step process that includes a nonstandardized backgrounds. Regardless, awareness of ASD in
teacher form, a “developmental red flag” form, school professionals should continue to be tar-
which describes social, communicative, and geted, both regarding characteristic symptoms
behavioral symptoms of ASD. At the initial stage and the variety of their manifestation in older
of any student referral process, the “developmen- children.
tal red flag” form is available for teachers to com-
plete, which serves as a Level 1 screener in the
model. In the presence of initial concerns, school Screening Instruments for Middle
professionals may complete a Level 2 screener, Childhood and School-Age Children
such as several described in the next section.
Due to the difficulties with screening all chil- Several Level 2 screening instruments are
dren within schools for ASD, child find screening reviewed in the next section that may be utilized
programs notwithstanding, the “de facto” Level 1 within various service delivery settings, such as
screen for ASD within school settings is often preschools, early intervention programs, elemen-
teacher referral. Capitalizing on teachers’ obser- tary schools, and older groups. The screeners
vation of student behavior, the use of a stream- included in the brief review vary in terms of the
lined ASD screening procedure involving a age of the individual rated (e.g., some are appro-
teacher nomination procedure has been piloted. priate for children to adulthood while others are
The rationale for utilizing such a procedure is designed only for school-age children), the num-
based, in part, upon the ecological validity of ber of items involved in the rating, the time period
teacher observations, including peer interactions rated, and the availability of teacher and parent
that occur within various school contexts. forms. For more comprehensive reviews and
Hepburn et al. (2008) evaluated the validity of detailed information for Level 2 screeners, the
such a procedure by asking 60 elementary school reader is referred to Campbell (2005) and
teachers to use a Teacher Nomination Form Campbell, James, and Vess (2014).
(TNF) to identify one or two students in their
classroom who best fit a list of ASD characteris-
tics. Teachers also completed a Level 2 ASD Social Communication Questionnaire
screener for all children (n = 1323) and agree-
ment between teacher nomination and screener Previously referred to as the Autism Screening
outcome was calculated; the TNF and ASD Questionnaire (ASQ; Berument, Rutter, Lord,
screener were administered in counterbalanced Pickles, & Bailey, 1999), the Social
order. Results documented an overall agreement Communication Questionnaire (SCQ; Rutter,
of 93 %, sensitivity of 0.61, specificity of 0.95, Bailey, & Lord, 2003) is a 40-item parent ques-
PPV of 0.50, and NPV of 0.97 for TNF nomina- tionnaire derived from a “gold standard” ASD
tion and ASD Level 2 screener result. Although diagnostic instrument, the Autism Diagnostic
the findings do not reach accuracy guidelines Interview-Revised (Rutter, LeCouteur, & Lord,
introduced earlier in the chapter, the teacher 2003). The SCQ assesses functioning in children
nomination strategy is worthy of further study as 4 years of age and older in the following domains:
this procedure could save time and potentially reciprocal social interaction, language and com-
identify those children who have not been identi- munication, and stereotyped behaviors. A total
fied in early childhood. Within this particular score, based on the domains, is then compared to
framework, additional study is needed to identify a specific cutoff score. Caregivers complete one
how many children nominated actually meet cri- of two forms (i.e., Current Form or Lifetime
5 Screening Methods 79

Form), which asks about the presence or absence Eaves et al. (2006) performed similar analyses
of symptoms associated with ASD over different by examining psychometric properties when
time periods. cutoffs of 11 and 15 were applied. When a cutoff
Initially, the SCQ was examined in a sample score of 15 was used, sensitivity was 0.71, speci-
of 200 individuals ages 4–40 who consisted of ficity was 0.79, and PPV was 0.65; however,
160 individuals with ASD and 40 with disorders specificity dropped to 0.35 and sensitivity
other than ASD (Berument et al., 1999). All indi- increased to 0.91 when a cutoff score of 11 was
viduals had received the ADI or ADI-R, and the utilized. Due to its higher associated sensitivity,
correlations between ADI/ADI-R and SCQ total overall findings suggest that a cutoff score of 11
scores and individual domains were significant, should be utilized on the SCQ despite lower
ranging from 0.55 to 0.71. For the total SCQ specificity than using a cutoff score of 15. Thus,
scale, the internal consistency was 0.90. When a the SCQ serves as a useful Level 2 measure if
cutoff score of 15 was used to differentiate indi- cutoff scores are adjusted depending on the popu-
viduals with ASD from those with other disor- lation clinicians intend to screen. Additionally,
ders, sensitivity was 0.85, specificity was 0.75, evidence suggests the SCQ is not as accurate for
PPV was 0.93, and NPV was 0.55. When chil- children ages 2 to 3; however, it appears particu-
dren with intellectual disabilities were removed larly useful for older children, especially those
from comparisons, the sensitivity and specificity over the age of 7.
increased to 0.96 and 0.80. However, specificity
dropped to 0.67 when the ASQ was used to dif-
ferentiate autism from intellectual disabilities, Autism Spectrum Screening
but sensitivity remained high (0.96). Despite Questionnaire
these promising results, it is important to note
that the ADI-R was used as part of the diagnostic The Autism Spectrum Screening Questionnaire
process, and the SCQ items were developed from (ASSQ; Ehlers, Gillberg, & Wing, 1999), for-
the ADI-R. Therefore, agreement between the merly known as the Asperger Syndrome
SCQ and ADI-R is expected; however, the results Screening Questionnaire, has been utilized in
of Berument et al.’s (1999) study presented school-based screening research. The ASSQ
promising initial results for the SCQ. includes 27 questions, with a yes, no, or some-
Additional studies have found mixed results times response format. The ASSQ consists of
when using the SCQ with children across a parent and teacher forms, for children ages
wide age range using a variety of cutoff scores 6–17 (parent) and 6–16 (teacher form). Overall,
(Corsello et al., 2007; Eaves, Wingert, Ho, & Posserud, Lundervold, and Gillberg (2009)
Mickelson, 2006; Wiggins, Bakeman, found that the ASSQ possessed good screening
Adamson, & Robins, 2007). When a cutoff properties across a total population sample,
score of 15 was utilized, Corsello et al. (2007) specifically high sensitivity and high specific-
found that the SCQ had lower sensitivity for ity. In their comparison to the general popula-
children 7 years and younger (0.63–0.68) than tion, Posserud et al. (2009) also found that
for those between the ages of 8 and 16 (0.71– although the form was designed for higher
0.80). Similarly, Wiggins et al. (2007) found functioning children, the ASSQ was efficient
the SCQ was less effective at identifying at- in detecting lower functioning children as well.
risk children between 17 and 45 months. Initial research from Mattila et al. (2009) cau-
Specifically in this sample, sensitivity was tioned against the use of the ASSQ as a singu-
0.47 and specificity was 0.89 using cutoff score lar instrument, noting combined parent and
of 15. However, sensitivity was maximized teacher ratings provided higher sensitivity and
(0.89) and specificity remained stable (0.89) specificity more consistently as compared to
when a cutoff score of 11 was used. parent or teacher ratings alone.
80 J.M. Campbell et al.

Childhood Autism Spectrum Test PPV (the predictive value of screening positive)
is particularly vulnerable when the base rate is
The Childhood Autism Spectrum Test (CAST; low. Derogatis and Lynn (1999), for example,
Scott, Baron-Cohen, Bolton, & Brayne, 2002), demonstrated that prevalence rates of less than
formerly the Childhood Asperger Syndrome 10 % result in PPVs that fall at 0.50 or less, even
Test, is a 37-item parent form; 31 items are in instances where sensitivity and specificity val-
summed to produce an overall score while six ues of a screening are excellent (i.e., 0.95).
items sample general development and do not Similarly, Clark and Harrington (1999) showed
contribute to the total score. The CAST has that the PPV of screening instruments with
shown good initial sensitivity and specificity; acceptable sensitivity and specificity (i.e., 0.80)
however, Posserud et al. (2009) reported several will not exceed 0.50 until the base rate of disor-
initial concerns related to the CAST, specifically der falls at or above 0.25. More recently, Groen,
in item content and moderate test-retest reliabil- Swinkels, van der Gaag, and Buitelaar (2007)
ity. Williams et al. (2008) investigated whether also discussed the low base rate problem with
the CAST produced different findings for males respect to the accuracy of ASD screeners.
and females, and the authors found significantly To illustrate the impact of prevalence on PPV,
higher scores for males than females. Williams consider our initial screener example again. If sen-
et al. (2008) proposed that gender differences sitivity and specificity values are held constant,
could be due to preferences rather than abilities and the screener is used with a sample with a prev-
and difficulties. For the CAST, and potentially alence rate of 0.50, the screener produces an excel-
other screeners, questions have arisen regarding lent PPV of 0.89 while the NPV falls to 0.82 and
whether the measures are sensitive enough to the overall hit rate drops slightly to 0.85 (Table 5.2).
detect more subtle difficulties potentially dis- Next, assume that the sensitivity and specificity
played by girls (e.g., management of social values remain constant, but that the prevalence rate
groups). falls to 0.01 (i.e., 1 in 100), lower than 0.015 (i.e.,
1 in 68), a frequently cited prevalence rate for
ASD in 8-year olds in the United States (CDC,
An Illustration of Problems 2014). In this instance, the screener produces a
Encountered when Detecting Low PPV of 0.07 while the NPV rises to 0.99 and the
Base Rate Disorders overall hit rate remains at 0.90 (Table 5.3).
The relationship between the base rate and
An important statistical reality deserves consid- PPV is an important one to consider because
eration when discussing the use and evaluation of ASD screeners are often developed and initially
screeners designed to detect low base rate evaluated within clinic settings and subse-
disorders, such as ASD. The prevalence of disor- quently evaluated with larger community sam-
der in a population or sample of interest will con- ples. Clinic settings feature artificially higher
tribute to how well a screener will perform, and base rates of ASD disorder which artificially

Table 5.2 An example of screening 1000 individuals with base rate of 0.50
Diagnostic result
Screening result Disorder No disorder
Positive True positive 400 False positive 50 PPV 400/450 = 0.89
Negative False negative 100 True negative 450 NPV 450/550 = 0.82
Sensitivity Specificity Hit rate
400/500 = 0.80 450/500 = 0.90 400 + 450/1000 = 0.85
Note. Sensitivity of test is 0.80. Specificity of test is 0.90. PPV = Positive predictive value; NPV = Negative predictive
value
5 Screening Methods 81

Table 5.3 An example of screening 1000 individuals with base rate of 0.01
Diagnostic result
Screening result Disorder No disorder
Positive True positive 8 False positive 99 PPV 8/107 = 0.07
Negative False negative 2 True negative 891 NPV 891/893 = 0.99
Sensitivity 8/10 = 0.80 Specificity Hit rate
450/990 = 0.90 8 + 891/1000 = 0.90
Note. Screener sensitivity is equal to 0.80. Screener specificity is equal to 0.90. PPV = Positive predictive value;
NPV = Negative predictive value

Table 5.4 An example of sequential screening with 30,000 individuals and base rate of 0.05
First screen of 30,000 (Prevalence rate = 0.05)
Disorder No disorder
Positive True positive 1200 False positive 2850 PPV 1200/4050 = 0.30
Negative False negative 300 True negative 25,650 NPV 25,650/25,950 = 0.99
Second screen of 4050 (Prevalence rate = 0.30)
Disorder No Disorder
Positive True positive 960 False positive 285 PPV 960/1245 = 0.77
Negative False negative 240 True negative 2565 NPV 2565/2805 = 0.91
Note. Screener sensitivity is equal to 0.80. Screener specificity is equal to 0.90

inflates PPV values and sensitivity values for PPV. The initial screen will still produce a fairly
screeners. Due to the precipitous fall in preva- large number of false positives who will receive a
lence once screening moves from clinic to com- second screen.
munity, PPV values also decrease. As such, Consider the use of two distinct screeners in a
some screenings with sound sensitivity and sequential screening format, with the first
specificity characteristics during development screener consisting of a small number of items
are likely to yield poorer accuracy values as such as might be used for surveillance purposes.
they are utilized in community settings. The potential value for sequential screening is
illustrated using our hypothetical screening
instrument. Again, assume the base rate for disor-
The Potential Value of Sequential der remains 0.05 and sensitivity (0.80) and speci-
Screening ficity (0.90) values remain constant for the two
screeners; however, the number of children
A proposed method for improving detection of a screened is 30,000, a number which has been
relatively low base rate phenomenon, such as reported in several population-based screening
ASD, is to engage in sequential (Derogatis & investigations for ASD. Using the initial abbrevi-
Lynn, 1999) or two-stage screening (e.g., Groen ated screener results in referral of 4050 individu-
et al., 2007). Sequential screening involves the als and a PPV of 0.30 (Table 5.4), which becomes
use of an initial screener to rule out a large por- the “new” base rate for disorder for the second
tion of a population who screens negative for a screener. The first screen will also produce a
disorder. Excluding a large number of true nega- large number of false positives (i.e.,
tives raises the base rate of the disorder of interest 2850/4050 = 0.70). When the second screener is
in the second screening group. A second screen- used, the PPV improves to 0.77 which results in
ing procedure is applied to the remaining sample significant added value of a positive test result at
which results in a corresponding increase in the second stage of screening.
82 J.M. Campbell et al.

Barriers to Screening Summary

Pediatric primary health care is often considered A variety of ASD-specific screeners are available
the service setting where young children with for use in various settings, including pediatric
ASD will be identified by professionals who con- primary care, early intervention programs, pre-
stitute the “first line of defense” (Crais et al., schools, and schools. Although psychometrically
2014, p. 2312). Despite repeated calls and pub- sound Level 1 and Level 2 screeners have been
lished recommendations, many pediatric health- developed within clinical samples, they produce
care professionals do not screen for ASD, poorer results when used with larger populations,
although the percentage of pediatricians screen- such as community screening programs. Despite
ing for ASD appears to have increased from 8 to the availability of established screeners and pub-
50 % over the past few years (Arunyanart et al., lished professional guidelines for pediatricians to
2012; dosReis et al., 2006; Gillis, 2009). Barriers screen for ASD at ages 18 and 24 months, many
to implementing ASD screening in pediatric young children are not being screened. Indeed,
primary care include lack of knowledge of ASD, recent data reveals that roughly 50 % of pediatri-
lack of knowledge of ASD screening instru- cians adhere to the AAP ASD screening guide-
ments, and lack of time and resources available lines. Many barriers to ASD screening have been
within the practice. Crais et al. (2014) found that identified within primary care settings, including
pediatric healthcare professionals identified the limited time, expertise, and familiarity with ASD
following needs: (a) availability of ASD screen- screeners, among others. Barriers encountered in
ers that were sensitive to social-cultural differ- pediatric primary care settings, and many others,
ences; (b) access to effective early intervention result in many children with ASD going unidenti-
programs for young children with ASD, once fied until 4 or 5 years of age.
identified; (c) continuing education; and, (d) As ASD screeners are developed and scaled
access to systems that would be able to handle an up for use within communities, their psychomet-
increase of ASD referrals. ric properties become less favorable, with the
The consistently low percentages of pediatri- predictive value of a positive screening result
cians actively screening for ASD have led to calls often vulnerable. The goal of an ASD screening
for allied health professionals to proactively program, however, is to identify those who have
screen for ASD, such as speech-language thera- previously gone unidentified; therefore, the gen-
pists and early interventionists. Within other set- eration of false positive screening results is often
tings, such as early intervention services, more desirable than false negatives. As such, it
however, providers also identify barriers to may be acceptable for a Level 1 screening to pro-
screening for ASD. Early intervention profes- duce a referral rate that significantly exceeds the
sionals, for example, report that they feel unpre- base rate to improve sensitivity. Any ASD screen-
pared to talk with families about concerns related ing program must be implemented with
to the presence of an ASD and that they are not appropriate planning, including staff training and
adequately prepared to utilize various ASD identification of appropriate follow-up referrals
screeners (Tomlin, Koch, Raches, Minshawi, & and services in the presence of a positive screen.
Swiezy, 2013). Early intervention providers, Until a highly reliable and valid behavioral or
however, reported that they were eager to receive medical marker is identified, available screeners
training in conducting ASD-specific screening will produce errors, in part, due to the relatively
(Tomlin et al., 2013). Federal public health cam- low base rate of ASD in general populations. One
paigns such as the CDC’s “Learn the Signs. Act potentially viable approach to conducting pediat-
Early” campaign have been developed and tar- ric, school, or community-based screening to
geted to various providers, including pediatri- counter the low base rate problem is to combine
cians and early childhood education professionals results from two brief screening measures, i.e., a
to address some of the barriers identified. simultaneous screening approach. In this
5 Screening Methods 83

approach, various thresholds for screening school psychology: Data-based and collaborative
decision making (6th ed.). Bethesda, MD: NASP.
decision-making are possible with (a) liberal
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Monitoring Progress in Autism
Spectrum Disorder 6
Valsamma Eapen, Katrina Williams,
Jacqueline Roberts, Nicole Rinehart,
and Jane McGillivray

Overview Context

The consensus of most professionals is that Heterogeneity and Complexity


autism is a lifelong condition but with abilities
and difficulties, associated problems, function The landscape of autism spectrum disorder
and participation, as well as management issues, (ASD) is diverse and complex; each individual
changing over time. Thus, while identification diagnosed with ASD varies in the severity of
and accurate diagnosis constitute a first step, impairment across behavioural, social, and cog-
ongoing monitoring is essential for helping the nitive dimensions, and each individual’s behav-
individual with ASD to reach their potential and iours or interests may be idiosyncratic. As ASD
manage developmental challenges that arise frequently co-occurs with other problems or dif-
throughout the life course. This chapter high- ficulties such as epilepsy, intellectual disability,
lights the key issues in the process of monitoring and other mental health diagnoses (Simonoff
and how this can be achieved along with current et al., 2008), ASD features may not be the focus
opportunities and pitfalls, where they exist. of interventions or strategies to improve well-

V. Eapen, M.B.B.S., Ph.D., F.R.C.Psych. (*) J. Roberts


Infant Child and Adolescent Psychiatry, University of Autism Centre of Excellence, Griffith University,
New South Wales, Sydney, NSW, Australia Nathan, QLD, Australia
Academic Unit of Child Psychiatry, South West N. Rinehart
Sydney (AUCS), Liverpool, NSW, Australia Deakin Child Study Centre, School of Psychology,
e-mail: v.eapen@unsw.edu.au Deakin University, Burwood, VIC, Australia
K. Williams J. McGillivray
Department of Paediatrics, University of Melbourne, Center for Social and Earth Development,
Parkville, VIC, Australia Deakin University, Burwood, VIC, Australia
Developmental Medicine, Royal Children’s Hospital,
Parkville, VIC, Australia
Murdoch Childrens Research Institute,
Parkville, VIC, Australia

© Springer International Publishing Switzerland 2016 87


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_6
88 V. Eapen et al.

being, function, and participation. For example, Recent reviews of assessment tools have iden-
anxiety, irritability, aggression, learning disabil- tified problems with validity and utility, includ-
ity, and self-injurious behaviour (Maskey, ing their appropriateness for measuring change
Warnell, Parr, Le Couteur, & McConachie, over time and the need for measure of health-
2013) often occur and require management. related quality of life to allow evaluation of eco-
Individuals with multiple coexisting problems or nomic impacts of interventions and management
difficulties will require closer monitoring over approaches (McConachie & Fletcher‐Watson,
time compared to individuals who present with 2014; Payakachat, Tilford, Kovacs, & Kuhlthau,
few or no comorbidities that impair occupational 2012). Also identified is that individuals with
function. These factors result in a unique presen- neurodisability, including autism, and their fami-
tation in each individual, and unique challenges lies value different outcomes to those commonly
for intervention and other strategies and useful measured (Allard et al., 2014).
and relevant monitoring. Add to this the different
values that each individual and their family bring
and it becomes apparent that the goals of each International Classification
individual, and hence the things that should be of Functioning, Disability, and Health
monitored will be as different as they are the
same. Due to this intrinsic clinical variability, The development of the International Classification
measuring changes in symptomatology and of Impairments, Disabilities and Handicaps
monitoring progress is necessarily complex, but (World Health Organization, 1980), now the
also crucial to improving the lives of each International Classification of Functioning,
individual. Disability, and Health (World Health Organization,
2001), provides a useful structure for assessing or
monitoring individuals with autism and other dis-
Validity, Utility, and Appropriateness abilities, with a focus on impairment, function,
of Tools and participation within a framework of chil-
dren’s rights and the application of the biopsycho-
There are significant challenges in monitoring social model. This approach has several
the impact of interventions in the context of ASD advantages including that disability is understood
(Eldevik et al., 2009; Howlin, Magiati, & as the consequences of underlying health condi-
Charman, 2009), and one of the main difficulties tions attributable to disease or injury and that the
involves the lack of reliable and valid tools that consequences are detailed as having a distinct
measure change and that can be repeated at dif- impact on human experiences at the levels of
ferent time points. As a result, evaluators have body, person, and society. In addition by differen-
resorted to using measures that are primarily tiating these terms conceptually and semantically,
diagnostic instruments but typically these are not it is emphasised that disability is not uni-dimen-
sensitive to change. Further, most longitudinal sional but rather manifested at different levels of
studies have focused on overall developmental human functioning in the form of impairments,
trajectories using standardised developmental performance limitations, and the experience of
instruments. These measures have significant disadvantage. It also provides a taxonomy with
limitations as they are primarily developed for numeric codes that can be used to document the
typically developing children and therefore elements unique to each of the three levels, with
delayed and different developmental patterns applicability for clinical and administrative pur-
observed in ASD are difficult to track over time. poses (Simeonsson et al., 2003).
Although there are some exceptions, most of The ICF allows the classification of functioning
these instruments do not allow measurements as universal human experiences involving ‘body
spanning the age range from preschool to adoles- function and body structures’ which can be con-
cence and beyond. ceptualised as well-being, ‘personal activities and
6 Monitoring Progress in Autism Spectrum Disorder 89

performance’ such as mobility and self-care that Table 6.1 Key items needing attention in an individual-
ised plan (IP) for children with ASD
can be conceptualised as function and ‘participa-
tion in community’ such as school, work, and civic Overarching long-term goal(s) for the person with
life. Since the barriers and facilitators within the ASD incorporating planning for transition
A thorough assessment of current performance in key
environment at each of these three levels can also
developmental and academic/employment/adaptive
be recognised through the ‘environmental factors skills areas
qualifiers’ option, this classification offers a dis- Measurable goals for each specified period (minimum
tinct advantage in terms of assessing eligibility six monthly interval)
and prioritisation of interventions as well as in A strategy for measuring progress and outline of when
monitoring progress. However one limitation is periodic progress reports will be provided
the application to and coverage of child character- Assessment of resources and consideration of which
services and educational strategies are to be provided by
istics and hence additional considerations are whom in order to reach, monitor, and assess the goals
required during the early developmental years. For A process for the collaborative review and revision of
example, there are issues relating to assessing chil- the IP at least on a 6-monthly basis
dren with limited cognitive and language abilities
resulting in a reliance on parental and caregiver
reports. It would be important to include, wher- as possible and include all of those involved with
ever possible, reports of children through inter- their care such as the family, therapists, and edu-
view, play, or other direct observations. cators in a collaborative process. Although the
specifics of an IP must necessarily change as each
individual progresses through their development,
Individualised Planning educational, and other settings, the main guiding
principles of an effective individual plan remain
Good practice dictates that intervention, manage- the same. These principles are seen as best prac-
ment, or care plans for ASD must be tailored to tice and they also govern recommendations from
the individual’s needs and goals, have research different developed nations such as the United
evidence supporting their effectiveness, and that States (Individuals with Disabilities Education
goals must be measurable, continuously moni- Improvement Act of 2004), the United Kingdom
tored, and frequently revised (National Institute (Children and Families Act, 2014), and Australia
for Health and Care Excellence, 2013; Prior, (The Australian Advisory Board on Autism
Roberts, Rodger, Williams, & Sutherland, 2011). Spectrum Disorders, 2014). Accordingly, the indi-
Yet as young children with ASD mature into ado- vidual plan should be re-evaluated at least every 6
lescents and young adults, delivery of best prac- months and the emphasis of this approach should
tice becomes more challenging as the context and be on accurate and objective measurement of
circumstances of individuals diverge (National progress in accordance with the set goals that
Institute for Health and Care Excellence, 2012). address individual strengths and needs as detailed
Even during the school years while some children in Table 6.1.
with an ASD are schooled entirely in autism-
specific or special education schools, the majority
are included to some degree in general education Goal Setting as a Core Element
programmes. After school the diversity of possi- of Monitoring Progress
ble environments increases further, ranging from and Transitions
university education, to the work place to sup-
ported employment options and accommodation Intervention and management vary over time, as
arrangements. Individual plans should incorpo- do their goals and tools that would be used to
rate as much input from the individual with autism measure whether goals have been achieved.
90 V. Eapen et al.

Key Ages and Stages framework. Further, monitoring information


should always cause professionals to pause and
Four main stages in life can be identified that are reflect on what could be creating the patterns that
likely to bring different goals, because of the are being observed, and how that information
changing environment, the change in ability, and would assist in decision making on any changes
different priorities of individuals and families. that needs to be made to the ongoing manage-
The first is the preschool years, the second the ment plan. Things that might need modification
primary years, the third the high school years, could include the nature, frequency or setting of
and the fourth the adult years. Of course within interventions, the way treatment plan is being
these stages there are further important divisions, coordinated and provided, or the environment,
but for ease we will focus on these four in the community supports, or other aspects of care.
hope that individual variation due to, for exam- Ongoing monitoring and assessing progress is
ple, ageing can be catered for because of the flex- central to intervention, education and social pro-
ibility of the approach that is being presented. grammes in ASD, and fundamental to all pro-
In the early years the focus will be on develop- grammes that include goals.
mental impairments in the areas of receptive lan-
guage, expressive language, social interaction,
fine/gross motor skills, cognition, play skills, and Fit-for-Purpose Monitoring
adaptive behaviour/personal independence.
However, over time, there will be a shift from An approach that can add value to what we know
assessing specific developmental domains and about appropriate monitoring for different ages
abilities to assessing participation in education, and stages of children with autism is consideration
employment, or civic life. Time points for assess- of the purpose of monitoring. In this approach,
ments would also deserve special attention in the monitoring can be to identify autism, to assess
monitoring process. For example there are well- autism interventions, to identify common prob-
identified points of stress for the individual with lems early, or to ensure that ongoing manage-
autism and their families when goal-specific ment is maximising opportunities for an
assessment and planning would be critical and individual with autism and their family.
such time points may include immediately after Embedding the international classification of
diagnosis in terms of choice of early intervention, functioning, disability, and health with this
start of school or other educational programmes, approach ensures monitoring that includes infor-
transition from one educational setting to another mation about the impairment or well-being, func-
and in particular transition to high school, and tion, and participation as relevant.
then post high school as they move into voca-
tional or career/employment related placements.
Issues relating to life skills, personal, social and Identifying Autism
sexual relationships, driving, and independent
living as well as mental health would also deserve Monitoring for early signs and symptoms of
due consideration. Further, any other major life ASD can assist timely identification and oppor-
event in the life of individuals with autism will tunities for early intervention. Although some of
create additional needs for themselves and their these symptoms may be evident from as early as
families, over and above those experienced by the first year of life, ongoing surveillance is the
the general population. Since it will be difficult to key to monitoring these symptoms to determine
initiate contact with services and agencies for the their developmental course and accurate diag-
first time during such times of crisis, specific nosis. Studies based on the siblings of children
attention to how families and individuals could with an affected older sibling have indicated
easily connect with appropriate agencies at these delay or differences in early attentional control,
times needs to be built in to the monitoring emotion regulation, social orienting/approach,
6 Monitoring Progress in Autism Spectrum Disorder 91

and communication development (Brian, to relieve a premonitory urge, and in ASD these
Bryson, & Zwaigenbaum, 2015). These domains behaviours are characterised largely by an insis-
may also be appropriate targets for early inter- tence on sameness and unwavering rigidity in
vention. Some of the main domains of ASD that routine. Despite being a major target for ther-
are relevant to monitoring for symptoms sug- apy, repetitive behaviours and restrictive inter-
gestive of autism are described below. ests appear to persist in severity over time, even
when children show progress in other areas of
Social communication: It has been suggested that their symptomatology (Dawson et al., 2010;
early abnormalities in brain development in Vivanti et al., 2014).
autism lead to early low-level deficits in recogni-
tion and orientation towards social stimuli which Sensory sensitivities: Previously, researchers have
then cascades to lack of social engagement with shown that there are distinct sensory profiles in
primary caregivers during infancy and resulting autism relating to behaviours associated with
in decreased exposure to the reciprocal social sensory reactivity (the intensity of the response to
interactions critical for development of typical a sensory stimulus) and multisensory integration
social behaviour. There is substantial evidence to (combining information from multiple sensory
support the presence of these types of deficits stimuli) which links with specific patterns of
which in turn suggests a need for intervention to behaviours (Lane, Molloy, & Bishop, 2014). This
support the development of early social engage- would suggest that specific intervention strate-
ment and reciprocity designed to minimise diver- gies matching the sensory difficulties in those
gence from a typical developmental trajectory affected would be beneficial.
(Webb, Jones, Kelly, & Dawson, 2014). Emerging
evidence indicates that interventions that address
early deficits in joint attention and social reci- Evaluating Interventions
procity using strategies that involve interpersonal
exchange and positive affect, shared engagement Although it is outside the scope of this chapter to
with real-life materials and activities, sensitivity discuss the various behavioural and developmen-
to child cues and adult responsivity etc. facilitate tal interventions available, some background is
the development of age appropriate socio- necessary for an understanding of how the suc-
communicative behaviours. cess of such interventions and management strat-
egies may be measured.
Restricted Repetitive Behaviours (RRB): As Current clinical guidelines advise focussing
repetitive and restrictive behaviours are a core on improvements in the core ASD characteris-
symptom of ASD, and can be a significant cause tics, especially social interaction and reciprocal
of impairment affecting multiple facets of life, communication, by including techniques to
these specific behaviours are frequently targeted expand the child or young person’s communica-
by intervention programmes. However, while tion, interactive play and social routines, and
other core ASD symptoms are strongly related working with parents, carers, teachers, or peers to
to general developmental level and correlate facilitate greater understanding of, and respon-
with cognition and IQ, insistence on sameness siveness to, the child or young person’s patterns
does not share this relationship with these vari- of communication and interaction (National
ables (S. L. Bishop, Richler, & Lord, 2006; Institute for Health and Care Excellence, 2013).
Richler, Huerta, Bishop, & Lord, 2010). Further, For the preschool age group some recommended
RBBs are not unique to ASD but can also occur techniques include the integration of play-based
in other psychiatric and neurological disorders strategies with parents, carers, and teachers with
such as obsessive compulsive disorder and therapist modelling and video-interaction feed-
Tourette syndrome. In OCD this is driven by a back to increase joint attention and engagement.
need to relieve anxiety and intrusive thoughts, Additionally, clinicians, educators, and carers
while in Tourette syndrome this follows a need may employ techniques such as pivotal response
92 V. Eapen et al.

training, prompting, reinforcement, and discrete a series of investigator-led processes designed to


trial teaching (Odom et al., 2003) over a short elicit naturalistic social and communicative
period of time to enact a change in a specific behaviours from the child. The investigator thus
behaviour or to develop a targeted skill. builds a profile of the child’s social communica-
Typically, in efficacy studies each individual’s tion, social relatedness, play and imagination,
developmental skills, cognitive ability, and and restricted and/or repetitive behaviours.
behaviours that challenge or are unwanted will Despite its reputation as the ‘gold standard’ mea-
be assessed at the start and end of intervention. sure of autistic severity, the ADOS was designed
The monitoring tools, also called outcome mea- as a diagnostic tool to measure relatively stable
sures in this context, selected will also reflect the traits in ASD which are not anticipated to vary
form of intervention chosen. For example, if a greatly over a lifetime. Longitudinal studies have
child is undergoing a comprehensive treatment demonstrated the stability of these standardised
model (CTM) which is designed to elicit a broad scores throughout childhood (Chawarska, Klin,
developmental response, progress may be moni- Paul, & Volkmar, 2007; Gotham, Pickles, &
tored across autism severity and developmental Lord, 2009; Hedvall et al., 2014). Indeed, even
milestones using treatment-specific tools as well when children demonstrate vast gains in other
as other assessment tools for autism-specific domains such as expressive and receptive lan-
symptoms such as the Social and Communication guage and adaptive behaviours as a result of an
Questionnaire (SCQ) and Autism Diagnostic autism-specific intervention, their ADOS scores
Observation Schedule (ADOS), in addition to did not significantly improve (Dawson et al.,
using additional measures such as the Mullen 2010; Vivanti et al., 2014). While improvements
Scale of Early Learning (MSEL) and Vineland in such measures would undoubtedly indicate
Adaptive Behaviour Scale (VABS) to monitor robust changes to behaviour, a lack of improve-
overall development and adaptive functioning ment may indicate insensitivity to subtle
(Dawson et al., 2010; Eapen, Crncec, & Walter, improvements and treatment effects, especially
2013; Vivanti, Dissanayake, Zierhut, & Rogers, when the aim of an intervention does not broadly
2013). The measures commonly used in these target ASD, but rather a specific behaviour or
instances to assess and monitor progress would outcome. Hence, while the ADOS may help
change over time, and some of the commonly assess the progress of a CTM with limited sensi-
used measures are detailed in Table 6.2. When tivity, it is unlikely to accurately reflect progress
establishing intervention goals in practice relating to specific tasks or behaviours. However
domains as described above, it is important to it can be useful if such progress results in the
include, along with overall development, other child no longer reaching a diagnostic status on
aspects of functioning, participation, and quality the repeat ADOS assessment.
of life, for the individual with autism and their
family. In this section we will focus on autism Social Responsiveness Scale (SRS)
characteristics, development, and abilities and The Social Responsiveness Scale (Constantino &
will discuss other key elements of expected out- Gruber, 2005) is a brief quantitative measure of
comes from intervention in later sections. autism severity in children and teenagers. It
focuses on the degree of impairment in the core
Autism Features ASD domains of social awareness, social infor-
mation processing, reciprocal social communica-
Autism Diagnostic Observation Schedule tion, social anxiety/avoidance, and stereotypic
(ADOS) behaviour/restricted interests. The SRS compares
The Autism Diagnostic Observation Schedule favourably with the ADI-R (Constantino et al.,
(ADOS; Lord et al., 2000) is a standardised tool 2003); however it is scored based on the observa-
for the direct observation and measurement of tions of parents or teachers, and hence has the
autistic symptomatology. The ADOS consists of limitation of lacking clinician input.
6
Table 6.2 Commonly used assessment tools for monitoring progress throughout life
Type of change Toddlers Preschool age group Primary school age Secondary school age Adults
Evaluating Autism characteristics ADOS—toddler ADOS-1 to 4 ADOS-1 to 4 ADOS-1 to 4 ADOS-1 to 4
interventions version depending on level depending on level depending on level depending on level
of language of language of language of language
SRS SRS SRS Social Responsiveness
Scale-Adult version
(SRS-A)
RBS-R RBS-R RBS-R RBS-R
ESCS
CARS-2 CARS-2 CARS-2
SCQ SCQ SCQ SCQ
AIM AIM AIM
ATEC ATEC ATEC ATEC
Development and abilities ASQ and ASQ:SE
BSID-III
Monitoring Progress in Autism Spectrum Disorder

CBCL 1.5–5 CBCL 1.5–5 CBCL 6–18, TRF CBCL 6–18, TRF ASR/ABCL
6–18, and YSR 11–18 6–18, and YSR 11–18
DBC DBC DBC
GMDS GMDS GMDS
MSEL MSEL
SB5 SB5 SB5 SB5 SB5
WPPSI WPPSI WPPSI or WISC-IV WISC-IV
Communication CCC-2 CCC-2
CELF-P CELF-4 CELF-4 CELF-4
CSBS-DP CSBS-DP
MacArthur-Bates CDI
NRDLS NRDLS NRDLS
PPVT-4 PPVT-4 PPVT-4 PPVT-4 PPVT-4
Pragmatics profile Pragmatics profile Pragmatics profile Pragmatics profile Pragmatics profile
PLS-5 PLS-5 PLS-5
Adaptive ability BASC-2 BASC-2 BASC-2 BASC-2 BASC-2

(continued)
93
94

Table 6.2 (continued)


Type of change Toddlers Preschool age group Primary school age Secondary school age Adults
CBCL 1.5–5 CBCL 1.5–5 CBCL 6–18, TRF CBCL 6–18, TRF
6–18, and YSR 11–18 6–18 and YSR 11–18
SDQ SDQ SDQ SDQ
VABS II VABS II VABS II VABS II VABS II
Early identification of Maladaptive behaviours DBC DBC DBC
associated conditions
ABC ABC ABC ABC
Sleep problems CSHQ CSHQ
Sleep diary Sleep diary Sleep diary Sleep diary
Maximising potential: Function PEP3 PEP3
individual
TRSSA TRSSA
Participation CAPE
CHORES
PICO-Q
Maximising potential: Stress DASS
family
PSOC
PSI/SF
Quality of life PedsQL PedsQL PedsQL PedsQL
QoLA—parent/carer QoLA—parent/carer QoLA—parent/carer QoLA—parent/carer QoLA—self-report
report report report report or self-report
version depending on
language ability
V. Eapen et al.
6 Monitoring Progress in Autism Spectrum Disorder 95

Repetitive Behaviour Scale—Revised Interview (ADI; Rutter, Le Couteur, & Lord,


(RBS-R) 2003). The SCQ covers the areas of communica-
The Repetitive Behaviour Scale—Revised is a tion, reciprocal social interaction, and restricted
parent-completed questionnaire which character- and repetitive behaviours and interests, which are
ises the severity of repetitive behaviours across core diagnostic criteria for autism. There are two
six subdomains: stereotyped behaviour, self- versions: a ‘current’ version designed for chil-
injurious behaviour, compulsive behaviour, ritu- dren under 5 years and a ‘lifetime’ version
alistic behaviour, sameness behaviour, and designed for children ≥5 years. The current ver-
restricted behaviour (Bodfish, Symons, Parker, & sion is helpful for treatment/planning in that it
Lewis, 2000). indicates the type and severity of the characteris-
tics of autism in individual children. The items
Early Social Communication Scales (ESCS) can be used for setting treatment goals for exam-
The Early Social Communication Scales (Mundy ple, if the child has no ability to take turns in a
et al., 2003) is used to measure social behaviour conversation, conversational turn taking can be
and joint attention skills in a structured setting. targeted in the intervention programme. The
During the ESCS, the child is seated at a table SCQ can be used for monitoring purposes as it
while an experimenter presents a range of stan- can measure change over time.
dardised probes assessing social responsiveness
and communication skills, including initiation Autism Treatment Evaluation
and response to joint attention, as reflected in fre- Checklist (ATEC)
quencies of child alternating gaze, showing, and The Autism Treatment Evaluation Checklist
pointing to share. The ESCS has shown good (ATEC) (Rimland & Edelson, 1999) is another
reliability and validity and has been used in stud- tool that can be used by clinicians and parents to
ies of children with ASD, including treatment evaluate treatment outcomes and to monitor
studies (Kasari, Freeman, & Paparella, 2006; progress in ASD. The ATEC can be accessed and
Remington et al., 2007; Salt et al., 2002). scored online by parents, teachers, and/or other
primary carers (http://legacy.autism.com/ari/
Childhood Autism Rating Scale (CARS) atec/atec_report.htm). The scale covers 77 items
Childhood Autism Rating Scale (Schopler, in the areas of communication, sociability, sen-
Reichler, & Renner, 1986) and the revised ver- sory and cognitive awareness, and health and
sion, CARS2 (Schopler, Bourgondien, Wellman, physical behaviour, and also provides a total
& Love, 2010), can be completed by a parent, score.
teacher, or a clinician, based on subjective obser-
vations of the child’s behaviours. Based on the Autism Impact Measure (AIM)
findings of a bimodal distribution among these The Autism Impact Measure (AIM) (Kanne
scores, the scale includes criteria to differentiate et al., 2014) is a 25-item questionnaire that has
between those with mild to moderate autism and been specifically designed to have greater sensi-
those with severe autism (Schopler, Reichler, tivity detecting changes in core ASD symptoms.
DeVellis, & Daly, 1980). It asks respondents to recall a 2-week period with
items rated on two corresponding 5-point scales
Social Communication of frequency and impact of core ASD symptoms.
Questionnaire (SCQ) Using exploratory factor analysis, four factors
The Social Communication Questionnaire (SCQ) were found namely (1) repetitive behaviours, (2)
(Berument, Rutter, Lord, Pickles, & Bailey, odd/atypical behaviours, (3) communication/lan-
1999), formerly known as Autism Screening guage, and (4) social/emotional reciprocity, and
Questionnaire, is based on a well-validated par- these were observed to concur with the reports of
ent interview, the original Autism Diagnostic symptom severity/impact.
96 V. Eapen et al.

General Development and Ability with reduced physical activity and participation,
In infants and toddlers, the symptoms of an ASD there are health as well as psychological benefits
may only be starting to become apparent, and any for ongoing monitoring of a child’s motor devel-
differences between an affected child and their opment. By monitoring a child’s functioning in
peers may not seem too extreme. However, over relation to their individual motor profile and
time the differences may become more pro- potential limitations, a holistic management
nounced and a child with ASD may lag further approach can be put in place that includes the
behind their peers. This is one of the greatest optimisation of activity and participation (Emck,
opportunities for an early intervention, as it pro- Bosscher, Beek, & Doreleijers, 2009).
vides intensive support for young children to
make more early gains, potentially before their The Mullen Scales of Early Learning
developmental trajectories uncouple from those The Mullen Scales of Early Learning (MSEL;
of their peers. To focus on improving develop- Mullen, 1995) is a standardised, normed develop-
mental outcomes in young children, it is essential mental assessment for children aged birth through
to accurately monitor and measure progress in 68 months. It provides an overall index of ability,
the five developmental domains of early child- the Early Learning Composite, and subscale scores
hood: physical, social, emotional, language, and of Receptive Language, Expressive Language,
cognitive skills. A child with ASD may experi- Visual Reception, and Fine Motor skill.
ence general or specific impairments in any or all
of these domains and associated subdomains, Ages and Stages Questionnaire
from a particular sensory processing abnormality The Ages and Stages Questionnaire (ASQ;
to pervasive intellectual impairment. Squires, Bricker, & Twombly, 2009): Parents or
In addition to monitoring core symptoms and caregivers can use the ASQ questionnaires to
psychopathology in children with ASD, it is also check a child’s general development and the
important to take into consideration a child’s ASQ:SE (socio-emotional) questionnaire to
motor profile in their overall management plan. check a child’s social emotional development.
In a study by Papadopoulos et al. (2011) of fifty-
three 7–12 year old children with ASD, a signifi- The Bayley Scales of Infant Development
cant positive correlation between impairments in Bayley (1993): The Bayley Scales of Infant
motor proficiency (in particular ball skills and Development (BSID-III is the current version) is
balance) and DBC measures of emotional/behav- a standard series of measurements used to assess
ioural disturbance, autistic symptoms, and com- the motor (fine and gross), language (receptive
munication disturbance was reported. These and expressive), and cognitive development of
authors suggest that adjunct motor measures (in children aged 0–3 years.
particular balance) may be a useful objective
measure to help monitor the overall developmen- Griffiths Mental Developmental Scale
tal profile of a child with ASD over time Griffiths Mental Developmental Scale (third edi-
(Papadopoulos et al., 2011). For children with tion; Griffiths, 2006): The six subscales include
ASD who have significant motor impairment that Locomotor (gross motor skills including the abil-
might range from problems with clumsiness, dif- ity to balance and to co-ordinate and control
ficulty with motor planning, handwriting difficul- movements); Personal-Social (proficiency in the
ties, and dystonia, there is a need for clinical activities of daily living, level of independence,
planning around whether motor symptoms should and interaction with other children); Language
be directly addressed, for example, through (receptive and expressive language); Eye and
intensive occupational therapy, or whether these Hand Co-ordination (fine motor skills, manual
difficulties should be ‘monitored’ over time. This dexterity, and visual monitoring skills);
is particularly relevant in the primary school Performance (visuospatial skills including speed
years. Given that motor impairment is associated of working and precision), and Practical
6 Monitoring Progress in Autism Spectrum Disorder 97

Reasoning (ability to solve practical problems, may occur separately from communication devel-
understanding of basic mathematical concepts, opment (Jordan & Jones, 2012). Very young chil-
and understanding of moral issues). dren with autism usually show divergent
communication development with differences in
Cognitive Ability and Intelligence the development of joint attention and early
There is considerable variability in levels of cog- engagement with others (Charman & Stone, 2008;
nition in individuals with ASD and therefore Toth, Munson, Meltzoff, & Dawson, 2006). Also,
accurate intelligence assessment is important in young children with autism are less interested in
treatment planning. people than in objects (Kasari et al., 2006) and pri-
marily, as a result of paying less attention to other
Stanford-Binet Intelligence Scales: Fifth people in their environment, have poor early social
Edition communication development. This extends to the
The Stanford-Binet Intelligence Scales: Fifth development of language; for example at the most
Edition (SB5) (Roid, 2003) is a widely used stan- basic level the learning of the names for things is
dardised intelligence scale which assesses multi- highly dependent on joint attention and interaction
ple components of intelligence. It includes ten with primary caregivers. Assessment of communi-
subtests, five verbal and five nonverbal, which cation in autism needs to be broad and address all
can be used to determine verbal intelligence aspects of communication including language
(VIQ), nonverbal intelligence, and full-scale or development and the structure and function of lan-
abbreviated intelligence. Although it was origi- guage and communication. For preverbal, nonver-
nally thought that most people with ASD also suf- bal, and verbal individuals with autism, assessment
fered comorbid intellectual disability (ID; i.e. of communication as well as of language develop-
IQ < 70), more recent estimates have reduced this ment is essential. Accurate assessment of receptive
co-occurrence to approximately one third to one and expressive communication is also important
half of cases (Centers for Disease Control and because unlike other condition, in autism recep-
Prevention, 2014). Additionally, epidemiological tive language is often more impaired than expres-
studies indicate that more than a quarter of partici- sive language (Hudry et al., 2010). This can be
pants with ASD have average or above average misleading when those around the child or adult
intelligence (i.e. IQ > 85) (Charman et al., 2011). with autism assume, not unreasonably, that they
understand at the same level at which they speak.
WISC/WPPSI and Other Tests Children with autism appear to learn language pri-
of Intelligence marily through a process of rote learning chunks
Wechsler Pre-school and Primary Scale of of language, which they associate with particular
Intelligence (WPPSI; Wechsler, 1989, 2002) or internal and external contexts. Speech often gives
the Wechsler Intelligence Scale for Children a stereotyped impression and echolalia is com-
(WISC-IV; Wechsler, 2003) as appropriate; for mon. It is important to assess exactly what the
those unable to be tested or those not reaching child understands and what cues they follow. They
standardised T scores to derive an IQ score, an IQ may be expert at interpreting visual cues and con-
estimate, a best estimate of the Developmental textual information while understanding very little
Quotient (DQ) can be calculated using any of the of what is actually being said to them.
general developmental tests as above using the
equation Mental Age (MA) divided by the chron- Children’s Communication Checklist (CCC)
ological age and multiplied by 100. Children’s Communication Checklist (CCC-2;
D. Bishop, 2003) is a 70-item questionnaire com-
Communication pleted by a caregiver and screens for communica-
Autism is unique in that essentially the develop- tion problems in children aged 4–16 years. The
ment of communication may not be directly linked test evaluates a broad range of language skills
to the development of language. More than in any such as recalling and formulating sentences, word
other condition, in autism, language development classes, and word definition and understanding
98 V. Eapen et al.

spoken paragraphs and semantic relationships. to identify speech and language delays and
There is also a version for older adolescents and impairments in very young children, from 2 to 7
adults. years 5 months.

Clinical Evaluation of Language Peabody Picture Vocabulary


Fundamentals (CELF) The Peabody Picture Vocabulary Test 4 (PPVT-4;
There are preschool and 5–22 years version of this L. M. Dunn & Dunn, 2012): Measures listening
assessment (CELF-P; Elisabeth H. Wiig, Secord, comprehension of vocabulary in standard English
& Semel, 2004), for preschool to early school age from 2.5 years.
children. Subtests include basic concepts, sentence
and word structure, formulating labels, recalling Pragmatics Profile of Everyday
meaning, and linguistic concepts. Communication Skills in Children
CELF-5 (E. H. Wiig, Semel, & Secord, 2013) is The Pragmatics Profile of Everyday Communication
a quick and accurate assessment for ages 5–22 years Skills in Children (Dewart & Summers, 1996):
to assess for a language disorder. The test evaluates Version for preschool aged children 0–4 years, school
a broad range of language skills such as recalling aged children 5–10 years, and adolescents/adults.
and formulating sentences, word classes, and word The assessments are structured interviews with a pri-
definition and understanding spoken paragraphs mary carer designed to assess child communicative
and semantic relationships. The current battery of functions, response to communication, interaction
tests provides a comprehensive language assess- and conversation, and contextual variation.
ment including a robust assessment of pragmatics
using observations and interactive activities. Preschool Language Scale
The Preschool Language Scale fifth ed (PLS5)
Communication and Symbolic Behaviour (Zimmerman, Steiner, & Evatt Pond, 2011), birth
Scales Developmental Profile to 7 years: This is a direct assessment of the child
Communication and Symbolic Behaviour Scales designed to evaluate maturational lags, strengths,
Developmental Profile (CSBS-DP; 6 months–6 and deficiencies by testing auditory comprehen-
years) (Wetherby & Prizant, 2002): This assess- sion and verbal ability.
ment is a combination of parent report and face-
to-face evaluation of the child. The assessment Adaptive Functioning
measures seven language predictors: emotion There is some evidence to suggest that there is a
and eye gaze, communication, gestures, sounds, cognitive advantage over adaptive functioning in
words, understanding, and object use and is sen- children with ASD, and similar results have been
sitive to early delays in social communication, found in a recent study in an older sample (Matthews
expressive speech/language, and symbolic et al., 2015). Compared to communication and
functioning. socialisation skills, adults with ASD showed rela-
tive strength in daily living skills although this was
MacArthur-Bates Communication not true for adolescents. However, all standard
Development Inventories scores were well below average, regardless of their
The MacArthur-Bates Communication level of cognitive functioning which suggests the
Development Inventories (Fenson et al., 2007) need for interventions that target adaptive function-
(1–3), 3–37 months: The assessment consists of ing across the lifespan.
three inventories using parent report to probe use
of gestures, words, and sentence. Vineland Adaptive Behaviour Scale (VABS)
One critical indicator of an individual’s function-
Reynell Developmental Language Scales ing and progress is their ability to translate their
The New Reynell Developmental Language theoretical intelligence to practical intelligence,
Scales (NRDLS; Edwards, Letts, & Sinka, 2011): or their cognitive potential into real-life skills,
This is a direct assessment of the child designed hereafter defined as adaptive behaviour.
6 Monitoring Progress in Autism Spectrum Disorder 99

The Vineland Adaptive Behaviour Scales open-ended responses to items covering physical
(Sparrow, Balla, & Cicchetti, 1984) and (VABSII; problems, concerns, and strengths.
Sparrow, Cicchetti, & Balla, 2005) assesses All forms have parallel Internalising,
social, communication, motor, and daily living Externalising, and Total Problems scales. The TRF
skills reflective of an individual’s ability to navi- also includes Inattention and Hyperactivity-
gate life in the community. It is administered by Impulsivity subscales. The following cross-informant
parent interview and provides both age-equiva- syndromes can be derived from the forms: Anxious/
lent and standardised scores. Depressed; Withdrawn/Depressed; Somatic
Complaints; Social Problem; Thought Problems;
Behaviour Assessment System Attention Problems; Rule-Breaking Behaviour;
for Children (BASC) Aggressive Behaviour.
The Behaviour Assessment System for Children
(second ed.) (BASC-2; 2004) can be used to mea- Strengths and Difficulty
sure adaptive functioning across core domains Questionnaire (SDQ)
including adaptive/functional skill development The Strengths and Difficulty Questionnaire
and to monitor change. The assessment focuses (SDQ; Goodman, 1997) is a brief 25-item parent
on the measurement of adaptive and maladaptive report measure to elicit emotional and behav-
behaviour, which are important outcomes for ioural attributes of children and adolescents ages
intervention programmes. It is standardised 2 through 17 years. The SCQ has five subscales
(valid and reliable) for age range 2–21 years. For namely emotional problems, conduct problems,
those in the 2–5 year age range, the 134–160 hyperactivity/inattention, peer relationship prob-
items cover the key areas of activities of daily liv- lems, and prosocial behaviours and there is also a
ing, adaptability, aggression, anxiety, attention total difficulty score based on 20 items.
problems, depression, functional communica-
tion, hyperactivity, social skills, somatisation,
and withdrawal. There is a parent rating form and Early Identification of Associated
a teacher form (except activities of daily living Conditions
scale) and the parent and teacher observation
forms can be used to measure change following Maladaptive or Disruptive Behaviours
an intervention programme or over time. The presence of maladaptive behaviours in young
people with ASD can significantly limit engage-
Child Behaviour Checklist (CBCL) ment in treatment programmes, as well as com-
The Child Behaviour Checklist (Achenbach & promise future educational and vocational
Rescorla, 2001) version 1.5–5 years (CBCL 1.5– opportunities (Fulton, Eapen, Črnčec, Walter, &
5) or version 6–18 (CBCL 6–18) can be com- Rogers, 2014). Therefore decreasing such behav-
pleted by parents and others who see the children iours or replacing these with alternative adaptive
in home-like settings. It obtains parents’ reports behaviours will be a critical focus for interven-
of children’s competencies and problems. tions and subsequent monitoring. Dominick,
The Teachers Report Form 6–18 (TRF 6–18) Davis, Lainhart, Tager-Flusberg, and Folstein
is completed by teachers and other school staff (2007) reported aggressive behaviours including
who have known the child in school settings for hitting, kicking, and pinching and self-injurious
at least 2 months. It obtains teachers’ ratings of behaviours (SIB) such as head banging, hitting
many of the problems rated on the CBCL 6–18, oneself, and biting oneself, in around a third of
plus additional items appropriate for teachers. children with ASD. More than three-quarters of
The Youth Self-Report 11–18 (YSR 11–18) is children with these behaviours showed aggres-
completed by 11–18 year olds to describe their sive behaviours both at home and outside the
own functioning. It has most of the same compe- home. Furthermore, around 70 % had experi-
tence and problem items as the CBCL 6–18, and enced a period of severe temper tantrums and for
100 V. Eapen et al.

60 % of children with tantrums these occurred on of use of the DBC is to monitor comorbid ADHD
a daily basis and were a constant, rather than epi- symptomology (see Gargaro et al., 2014). Boys
sodic. Several authors have suggested that there with ASD may be particularly at risk for ADHD
is a relationship between inability to communi- comorbidity and require further monitoring, than
cate and the prevalence of maladaptive behav- age, IQ, and cognitively and academically
iours (Dominick et al., 2007) and self-injurious matched girls with ASD (May, Cornish, &
behaviours (Vismara & Rogers, 2010). Both Rinehart, 2014).
internalised behaviours (e.g. self-injurious
behaviour) and externalised behaviour (e.g. Aberrant Behaviour Checklist (ABC)
aggression to others) may also be a response to The Aberrant Behaviour checklist ( ABC ;
environmental stress (Bartak, Bottroff, & Zeitz, Aman, Singh, Stewart, & Field, 1985): This
2006). Thus disruptive and challenging behav- scale was primarily developed to assess drug
iours and their appropriate management and and other treatment effects on severely men-
ongoing monitoring have significant implications tally retarded individuals. Factor analysis of
for integration in educational settings and for the the 58 item has yielded five factors namely
overall functioning of the person with ASD. (1) Irritability, Agitation, Crying; (2)
Lethargy, Social Withdrawal; (3) Stereotypic
Developmental Behaviour Checklist (DBC) Behaviour; (4) Hyperactivity, Noncompliance;
The Developmental Behaviour Checklist (DBC)- and (5) Inappropriate Speech.
Parent/Caregiver or Teacher Version (DBC-P and
DBC-T; Einfeld & Tonge, 2002) is a 96-item Adult Behaviour Checklist (ABCL)
checklist of behavioural and emotional problems The Adult Self-Report (ASR/18–59) and Adult
in children aged between 4 and 18 years with Behaviour Checklist (ABCL/18–59); (Achenbach
developmental difficulties. & Rescorla, 2003): The ASR is used to obtain
The DBC provides an excellent measure of self-reports from adults on aspects of their adap-
emotional and behavioural problems in both chil- tive functioning and problems. The ABCL on the
dren and adolescents with developmental condi- other hand is used to obtain reports from people
tions (Einfeld & Tonge, 1992, 1995, 2002). The who know the adult person with problems well.
DBC can be used for children with intellectual There are normed scales for adaptive function-
disabilities as well as for children who are cogni- ing, as well as empirically based syndromes such
tively able (Brereton, Tonge, Mackinnon, & as Anxious/Depressed, Attention Problems,
Einfeld, 2002; Einfeld & Tonge, 2002). The DBC Withdrawn, Aggressive Behaviour, Somatic
has 96 items providing quantitative measures of Complaints, Rule-Breaking Behaviour, Thought
behavioural and emotional disturbance. Each Problems, and Intrusive problems as well as
item is scored on a scale ranging from 0- ‘not true Internalising and Externalising problems. The
as far as you know’ to 3- ‘often true or very true’. profiles also include a Critical Items scale con-
The total score of the DBC provides a measure of sisting of items of particular concern to clinicians
overall psychopathology. There are five sub- and a total score.
scales: Disruptive/Antisocial, Self-absorbed,
Communication Disturbed, Anxiety, and Social Tics
Relating (Dekker, Nunn, & Koot, 2002). In addi- Available evidence from the literature suggests
tion to measuring psychopathology, the DBC can that tics occur in around 20–40 % of individuals
be used as an autism screening tool (the DBC- with ASD, although there is significant variabil-
ASA) in children as young as 4 years of age ity in the extant research (Eapen, Črnčec,
(Brereton et al., 2002). McPherson, & Snedden, 2013). Perhaps the larg-
The DBC also has screening measures that est and best controlled study to date has reported
are able to identify and monitor individuals at a rate of 6.5 % for the occurrence of Tourette syn-
risk of developing comorbidities. One example drome in ASD (Baron-Cohen, Scahill, Izaguirre,
6 Monitoring Progress in Autism Spectrum Disorder 101

Hornsey, & Robertson, 1999) with considerably population, they occur at markedly higher rates.
higher rates of up to 50 % for tics when individu- Approximately 73–86 % of children with ASD
als with intellectual disability and ASD are con- experience problems with sleep onset and main-
sidered (Eapen, Robertson, Zeitlin, & Kurlan, tenance (e.g. long sleep onset latency, short sleep
1997). Awareness of tic disorders will allow for duration, early morning waking (Liu, Hubbard,
tics to be sensitively managed and possible Fabes, & Adam, 2006; Polimeni, Richdale, &
comorbidities anticipated and differentiated from Francis, 2005)). May et al. recently found that
tics, which in turn can lead to the minimum pos- 78 % of children with ASD had parent-reported
sible disruption to the young person. For exam- sleep problems compared to 29 % of typically
ple, tics may be mistaken for fidgetiness that can developing controls, with 65 % of children with
occur with ADHD, and coprolalia may attract ASD having persistent sleep problems 1 year
negative consequences such as disciplinary later (n = 84; 5–12 years) (May, Cornish, Conduit,
action in children and stigma and social embar- Rajaratnam, & Rinehart, 2013). This study also
rassment in adults. Pharmacological treatment showed that children with ASD who were poor
for tic disorders may include clonidine, espe- sleepers were more aggressive, hyperactive, and
cially when ADHD presents comorbidly, or anti- experienced greater social problems.
psychotic agents such as risperidone when there Papadopoulos et al. (2015) recently showed that a
are tics and comorbid behavioural problems such brief, behaviourally focussed intervention deliv-
as irritability, aggression, and insomnia (Eapen & ered to parents resulted in significantly improved
Gururaj, 2005). The presence of comorbid OCD sleep problems and behavioural problems for
would need attention and may necessitate treat- children with ASD. In addition, parents reported
ment with specific serotonin reuptake inhibitors, improvements in their own mental health after
while comorbid ADHD would necessitate the use participating in this programme. This is an impor-
of stimulants (with caution, monitoring for tic tant finding given sleep problems in children with
exacerbation) or atomoxetine. The risk of drug ASD have a pervasive impact on the family,
interactions and side effects may be increased in including elevated risk for parental stress and
those with brain damage or epilepsy, and gradual poor mental health (Doo & Wing, 2006).
increase in dosage with close monitoring is rec-
ommended in these situations (Eapen & Črnčec, Children’s Sleep Habits Questionnaire
2009). Psychotherapeutic techniques such as (CSHQ)
cognitive-behaviour therapy for OCD or compre- A useful tool for monitoring sleep in children
hensive behavioural intervention for tics (CBIT) with ASD is the Children’s Sleep Habits
have established efficacy (Piacentini et al., 2010; Questionnaire (CSHQ; Owens, Spirito, &
Watson & Rees, 2008); however, outcomes may McGuinn, 2000). The CSHQ is 33-item, behav-
be constrained in individuals where poor cogni- iour parent-reported validated measure of disor-
tive and learning abilities, and hyperactivity, are ders of initiating and maintaining sleep that can
a factor. Yale Global Tic Severity Rating Scale distinguish clinical from community samples.
(YGTSS; Leckman et al., 1989) can be a useful Eight subscale scores reflect major behavioural
tool in monitoring progress following interven- sleep disorders (bedtime resistance, sleep onset
tion for tics. delay, sleep duration, sleep anxiety, night wak-
ings, parasomnias, sleep disordered breathing,
Sleep Problems daytime sleepiness).
It is also important to monitor common comor-
bidities such as sleep disturbances which left Sleep Diary
untreated can have significant impact on a child’s Sleep diaries are also commonly used to monitor
cognition, academic functioning, behaviour, and sleep disturbances in children with ASD. Sleep dia-
mental health. Although sleep problems in chil- ries typically involve parents recording the time
dren with ASD are similar to those of the general their child gets into bed at night, falls asleep, any
102 V. Eapen et al.

awakenings, and morning wake time, permitting reporting that over 35 % of individuals with
the calculation of sleep duration, sleep onset latency, Asperger syndrome diagnosis had attempted sui-
and number and duration of night wakings. cide in the past, making it much higher than the
4.6 % lifetime prevalence seen in the general pop-
Eating Problems ulation (Paquette-Smith, Weiss, & Lunsky, 2014).
Children with ASD have been described to have However, identifying those at risk may be diffi-
atypical eating behaviours and food selectivity is cult due to the challenges in obtaining accurate
the most frequent of these problems. The every- history from individuals with ASD and careful
day management of mealtime behaviours among informal and formal enquiries with the young per-
children with ASD can have a negative impact on son as well as corroborative evidence from paren-
family routines and become a significant stressor tal or caregiver reports would be crucial in
for families. In a recent study Postorino et al. assessing for depression and suicidal behaviours.
(2015)investigated the clinical and behavioural
features in individuals with ASD with the aim of Bullying and Victimisation
identifying distinctive clinical profiles in children Bullying and victimisation are more prevalent
with and without food selectivity. These authors among youth with ASD than in the general popu-
observed that, while there was no statistically sig- lation. The role of anxiety in these situations is
nificant difference on gastrointestinal symptoms complex with a recent study observing that par-
and growth adequacy between those with and enting stress moderates the association between
without food sensitivity, parents of those with bullying victimisation and anxiety (Weiss,
food sensitivity reported significantly higher lev- Cappadocia, Tint, & Pepler, 2015). This study
els of parental stress and attributed a larger degree also found that when mothers reported high lev-
of their children’s behavioural problems to this. els of stress, the severity of anxiety was most
These findings suggest that early identification strongly associated with bullying victimisation,
and appropriate intervention coupled with ongo- which has implications for the management of
ing monitoring of distinctive clinical and behav- both child anxiety and parental stress in address-
ioural patterns linked to food sensitivity should be ing bullying and victimisation.
an important consideration in children with ASD.
Psychosis and Catatonia
Anxiety and Obsessive Compulsive Co-occurrence of psychotic symptoms in patients
Behaviours with ASD can be challenging as some of the core
High levels of anxiety are observed in around features of ASD such as deficits in social reci-
40 % of children with ASD with a recent meta- procity and communication, as well as restricted
analysis revealing that the most common type of behaviours and interests, can be mistaken for
anxiety is specific phobia (30 %), followed by psychosis. There are also instances of mis-
Obsessive Compulsive Disorder (OCD; 17 %), diagnosis or missed diagnosis of psychosis in
social anxiety disorder and agoraphobia (17 %), ASD as there is a subset of patients who present
generalised anxiety disorder (15 %), separation with a complex neurodevelopmental disorder
anxiety disorder (9 %), and panic disorder (2 %) with impairments that cross diagnostic categories
(van Steensel, Bögels, & Perrin, 2011). Early (Cochran, Dvir, & Frazier, 2013). Further, symp-
identification and appropriate management of toms of catatonia are being increasingly recog-
anxiety symptoms should form a critical compo- nised at a rate of 4–17 % in adolescents and
nent in the comprehensive management of ASD. adults with ASD (Dhossche, 2014). However it is
to be noted that behaviours such as repetitive
Depression, Self-Harm, and Suicidality movements, mutism, posturing, and frantic agita-
Low mood, self-harm, and suicidal behaviours tion can occur in autism, and hence caution
are higher in individuals with ASD as compared should be exercised and a diagnosis of catatonia
to the general population with one recent study should not be made unless there is a sharp and
6 Monitoring Progress in Autism Spectrum Disorder 103

sustained increase of these symptoms persisting One such example is the need for monitoring
for several days or weeks. DeJong, Bunton, and weight gain and metabolic abnormalities when
Hare (2014)in a recent review reported 22 papers using second generation antipsychotics (SGAs)
that described the treatment of catatonic symp- such as risperidone as these drugs are commonly
toms in a total of 28 children and adults with used in ASD. Given that the current evidence
ASD using electroconvulsive therapy (ECT), points to the occurrence of the key antecedents of
high-dose lorazepam, and behavioural therapy. metabolic syndrome soon after initiation of the
medication, suggested practice guideline for car-
Pharmacotherapy and Monitoring diometabolic monitoring in young people on
to Evaluate the Outcome antipsychotic medication includes 3-monthly in
of Medication Use the first year and biannually thereafter (Eapen,
No drug is currently known to improve autism Shiers, & Curtis, 2013).
characteristics. A key principle is to identify tar-
get symptoms and medication choice is matched
to those goals. For example risperidone has been Maximising Opportunities: Well-
found to reduce disruptive behaviour disorder Being, Function, and Participation
symptoms including aggression and conduct
problems in children aged 5–18 in the short term Individual with Autism
and on follow-up over 6 months (Loy, Merry,
Hetrick, & Stasiak, 2012), measuring outcomes Learning and Adjustment in School
with the irritability subscale of the Aberrant Programming and progress monitoring is particu-
Behaviour Checklist (ABC; Aman et al., 1985) larly complex in this context as many core aspects
and Conduct Problem subscale of the Nisonger of an individualised plan may not align to a pre-
Child Behaviour Rating Form (NCBRF-CP; scribed curriculum and may focus instead on
Aman, Tassé, Rojahn, & Hammer, 1996). Thus non-academic skills. For example, skills such as
whether using second generation antipsychotics communication, socialisation, and independence,
including risperidone and aripiprazole for severe which underpin success in all areas of learning
behavioural disturbance such as tantrums, aggres- and are associated with positive outcomes, are
sion, self-injury, etc.(Stigler, 2014), stimulants intrinsically difficult to measure and incorporate
for ADHD, melatonin for sleep problems, or into a curriculum. Individualised plans must
selective serotonin reuptake inhibitor (SSRI) for include measurable academic and functional
anxiety, OCD, or depression, both careful assess- goals that are not merely restatements of curricu-
ment of baseline symptoms and any change in lum, standards, or expectations, but are observ-
symptoms following treatment will need to be able, relevant, and assessable objectives intended
carefully monitored using relevant scales that are to facilitate specific gains in academic standards
specific to each of these conditions and symptom and life skills.
profiles as well as measures of overall improve- The usual approach to measuring achieve-
ment such as the Clinical Global Impression ment in school is standardised testing.
Severity Scale (Busner & Targum, 2007). CGI-S Administering a standardised test to a child with
is a widely used clinical rating scale of the sever- ASD can be difficult, and the results somewhat
ity of symptoms, and it is treatment sensitive. misleading. Students with ASD may demon-
Similarly there is a need to include monitoring strate challenging behaviour during the assess-
for adverse events of medication use. It is essen- ment, and research shows that test scores may
tial to monitor the side effects of individual medi- improve significantly if specialised procedures
cation using specific questionnaires to elicit the are implemented to increase the student’s
relevant side effects as applicable to each drug. engagement in the assessment task (Koegel,
There are also some general principles of moni- Koegel, & Smith, 1997). Further, although crite-
toring that would be in order in certain situations. rion-based or observation-based assessments
104 V. Eapen et al.

often provide valuable complementary informa- across core domains of communication, motor,
tion, numerous studies have shown that contex- and adaptive/maladaptive behaviour, and col-
tual variables such as the amount of attention lects information from a variety of sources:
given to the student prior to the assessment parents, teachers, and direct observation
(McComas, Thompson, & Johnson, 2003; (enabling triangulation of data).
Roantree & Kennedy, 2006), the environment
(Lang et al., 2009), the person implementing the Teacher Rating Scale of School
assessment (Ringdahl & Sellers, 2000), and the Adjustment
motivation of the person with autism and interest Teacher Rating Scale of School Adjustment
in the test materials can all affect the outcome. (TRSSA; Betts & Rotenberg, 2007) has been
It is important to consider what data will need demonstrated to have acceptable internal consis-
to be collected to document student progress tency and stability and can be used to evaluate
towards IP goals, which tools will be used to gen- school adjustment and participation across differ-
erate the data, and how frequently and who will ent time points. An exploratory factor analysis of
collect data and report progress. Popular methods the TRSSA has yielded three associated factors
employed by educators include direct methods, namely On-Task Classroom Involvement,
indirect methods, and authentic methods. As has Positive Orientation, and Maturity.
been discussed, each of these approaches in iso-
lation may not be effective in assessing the child Function
with ASD. Direct methods include behaviour One of the important considerations in monitor-
observation, such as frequency, duration and ing progress following intervention in ASD
interval recording, and curriculum-based assess- involves reduction of characteristics that have a
ment. Indirect methods are often auxiliary and functional impact. While reduction in ASD char-
include rubrics, which describe performance in acteristics has been extensively studied, the
qualitative or quantitative terms, attainment scal- improvement in functioning has not been suffi-
ing, in which the educator rates the student ciently addressed in ASD. While some character-
responses on a best-to-worst scale, and student istics may be persistent, pervasive, or occur
self-monitoring. Authentic methods such as frequently but have limited impact on day-to-day
anecdotal notes of informal interviews with stu- functioning, others although infrequent may have
dents and portfolios of student work involving a more profound functional impact. Also, it has
relevant skills as appropriate for the age. been suggested that functional impairment may
be independent of the presence and frequency of
PEP3 the characteristics as is the case with psychiatric
The Psycho Educational Profile 3 (PEP3; disorders, where the course and outcomes are dif-
Schopler, Lansing, Reichler, & Marcus, 2005) ferent based on the presence or not of functional
is designed to provide information to inform impairment (Bird et al., 1996). Evidence that
educational programming (IEP) by evaluating indicates the relationship between autism charac-
uneven learning strengths and weaknesses that teristics and function is not straightforward but is
characterise ASD, and provide information on now emerging (Szatmari et al., 2015). Further
developmental skill levels. The test also pro- there are issues pertaining to inconsistencies with
vides a measure of severity, establishes devel- the operational definition as well as the measure-
opmental/adaptive levels, and serves as a ment of functional impairment (Canino, Costello,
research tool in outcome research and learning. & Angold, 1999). While assessment of overall
This is particularly useful for programme improvement is the focus with measures such as
development and targets social communication the Children’s Global Assessment of Functioning
and adaptive behaviour. It can be administered (Shaffer et al., 1983), others such as the
by competent and experienced staff and is Vineland-II (Sparrow et al., 2005) have a focus
norm referenced, and provides a measure on specific aspects of adaptive functioning and
6 Monitoring Progress in Autism Spectrum Disorder 105

activities of daily living. Both these methods secondary education. For a student with ASD,
have distinct advantages and disadvantages and the high school years and IP should be catered to
further these measures do not link the function- maximising these outcomes, and their educa-
ing with specific characteristics in that they do tional focus shifts from aiming to fill in missing
not consider the impact of individual problems gaps in the student’s developmental profile to
on functioning. Measures such as the AIM hold optimise their post-school lifestyle and opportu-
promise in this regard by linking the frequency, nities preparation for independence. In the
impact, and interference of each symptom with United States, for example, students with dis-
overall functioning that would have significant abilities are generally required to develop a tran-
advantage in assisting with treatment planning sition plan as the driving force of their IP at age
and outcome assessment (Kanne et al., 2014). 14. Hence, while progress in ASD may still be
measured broadly in regard to cognition and
Participation adaptive functioning at this stage in life, there
will also be a greater emphasis on the attainment
School of specific practical skills. Overall, in terms of
For all children the crudest measure of participa- assessment and monitoring of progress, instead
tion in school is attendance. Attendance includes of continuing to assess what the student cannot
participation in the academic curriculum that can do and working towards improvements in those
be achieved at a school campus or in the home areas, the IP must be based on student interests,
environment. Unfortunately today many children preferences, strengths, and work habits and
with autism do not participate in the school cur- describe the supports and modifications neces-
riculum either because they have been excluded sary for their future success.
from it or because they refuse to go to school. At this stage, evaluation of ability should
The former indicates problems with ability to comprise both formal assessment tools and more
manage the types of problems that can occur in of the auxiliary methods previously described,
children and young people with autism and the such as structured observations and grading and
latter a failure in addressing issues or concerns to feedback of work samples. It should include
minimise the risk of refusal. assessment of student interests and preferences,
Participation in the social curriculum (some- career awareness, cognitive development, aca-
times called the ‘hidden curriculum’) is also impor- demic achievement, adaptive behaviour, self-
tant. It is not as immediately available to children determination, interpersonal relationship and
and young people in home schooling. Attendance at social skills, communication skills, emotional
a school campus is not sufficient to ensure partici- development and mental health, employment and
pation in the social curriculum. As such monitoring community skills, and community participation
is needed to ensure it is occurring. For children who and independent living skills. In this regard, age
are attending school monitoring of participation appropriate, specific and measurable goals as
should include information from the classroom and detailed in Table 6.3 must be set relevant to
outside the classroom. Monitoring should be linked school and post-school participation in educa-
to specific programme goals designed to enable the tion, employment, and independent living skills.
student to participate in non-academic aspects of
school life. Assessments such as the Participation Community
and Environment Measure for Children and Youth With regard to participation in community activ-
(PEMCY) (Coster et al., 2011) may also be useful. ities, available evidence from the literature sug-
gests that children with ASD participate in
After School activities less frequently and with less variety
Post-school participation is typically conceptu- compared to children with other developmental
alised along three dimensions: employment, disabilities as well as those who are developing
independent living, and participation in post- normally (LaVesser & Berg, 2011). Measures
106

Table 6.3 Examples of target goals, measurement of such goals, and relevant interventions in ASD
Skill area Targeted behaviour Measurement Intervention Reference
Academics Essay writing—total words written Number of words and elements Video modelling and self-monitoring Delano (2007a)
and function essay elements included
Essay writing—total words written, number Number of target elements Instruction, modelling, practice, and Delano (2007b)
of unique verbs, adverbs, and adjectives feedback
Adaptive skills Setting the table and putting away groceries Percentage of tasks performed Task analysis and video prompting Cannella-Malone et al. (2006)
correctly
Packing and unpacking bag, brushing teeth Percentage of tasks performed Task analysis and video prompting Rayner (2010)
correctly
Washing dishes Percentage of tasks performed Task analysis and video prompting Sigafoos et al. (2007)
correctly
Problem Disruptions, physical and verbal aggression, Problem behaviour per minute Functional communication training Kuhn, Hardesty, and
behaviour and straightening (obsessive) behaviour and percentage of items with extinction Sweeney (2009)
straightened
Physical aggression and destructive Frequency of aggressive Mindfulness exercise Singh et al. (2011)
behaviour behaviour
Social skills Conversational basics; providing positive Percentage of steps performed Group instruction, modelling, role Dotson, Leaf, Sheldon,
feedback to a speaker and answering correctly play, and feedback and Sherman (2010)
open-ended questions
Initiation to peers and responses to peers Frequency of behaviour Script and prompting Krantz and McClannahan (1993)
Vocational skills Prepare folders with advertising material, Percentage of tasks completed Simulation training: most-to-least Lattimore, Parsons, and
prepare folders and information notebooks successfully and independently prompting and task instruction Reid (2008)
Cleaning of sinks and mirrors in a company Percentage of tasks completed Simulation training: most-to-least Lattimore et al. (2008)
bathroom, and washing up in the break room successfully and independently prompting and task instruction
V. Eapen et al.
6 Monitoring Progress in Autism Spectrum Disorder 107

that have been used in this context include & Seltzer, 2007). Monitoring progress in ASD
assessments based on self-reports such as the would therefore need to include family adjust-
Child Assessment of Participation and ment and quality of life, stress, and coping as
Enjoyment (CAPE; King et al., 2006) although well as parental satisfaction, competence, and
children with ASD would find this difficult to confidence to manage their child as well as paren-
undertake and assessors would find it difficult to tal perception of their capacity to participate in
interpret the responses due to the child’s limited their community.
social communication abilities. Measures that The interactions between brothers and sisters
use interview with a caregiver such as the provide them with opportunity to experience
Preschool Activity Card Sort (Berg & LaVesser, sharing, companionship, rivalry, and other out-
2006) are difficult to administer as they are comes. Researchers who study ASD do not have a
resource intensive and require considerable clear understanding of why some sibling pairs
amount of interviewer time. While there are experience warm, supportive relationships,
some measures that focus on specific activities whereas others experience conflict and isolation
as is the case with Participation in Childhood (Rivers & Stoneman, 2003). Many individuals
Occupations Questionnaire (PICO-Q; Bar- with ASD have behaviour repertoires that might
Shalita, Yochman, Shapiro-Rihtman, Vatine, & be expected to affect sibling relationships and the
Parush, 2009) or in specific contexts such as the social, behavioural, and psychological adjustment
Child Routines Inventory (Sytsma, Kelley, & of their typically developing siblings. Findings
Wymer, 2001); Children Helping Out: regarding the effects of having a sibling with ASD
Responsibilities, Expectations, and Supports have been mixed and inconsistent (Macks &
(CHORES; L. Dunn, 2004), etc., valid general Reeve, 2007; Mascha & Boucher, 2006; Verté,
measures of activity participation for use in ASD Roeyers, & Buysse, 2003). Some researchers (e.g.
population are lacking. In a recent study, Little, Hastings, 2003b; Ross & Cuskelly, 2006) (e.g.
Sideris, Ausderau, and Baranek (2014) investi- Hastings, 2003b; Ross & Cuskelly, 2006) have
gated the use of Home and Community Activities reported negative outcomes (e.g. loneliness,
Scale (HCAS; adapted from Dunst, Hamby, behavioural difficulties, depression) for the typi-
Trivette, Raab, and Bruder (2000)) in a large cally developing siblings, whereas other research-
cohort of 713 children with ASD and found that ers (e.g. Kaminsky & Dewey, 2001; Mascha &
activity participation of school-age children fell Boucher, 2006) have found positive outcomes
into six dimensions, namely Parent–Child (e.g. less conflict within the relationship, high
Household Activities, Community Activities, self-esteem and self-concept) or no evidence of
Routine Errands, Neighbourhood–Social negative effects (Hastings, 2003a; Orsmond &
Activities, Outdoor Activities, and Faith-Based Seltzer, 2007). Orsmond and Seltzer investigated
Activities (Little et al., 2014). adult siblings of individuals with ASD and DS
and found that typically developing adult siblings
of individuals with ASD reported significantly
Families: Parents, Carers, and Siblings less contact and less positive effect in the relation-
ship with their sibling with ASD than did the DS
Families of children with ASD face unique chal- group. Pilowsky, Yirmiya, Doppelt, Gross-Tsur,
lenges, and as a result ASD families experience and Shalev (2004)reported that most siblings of
higher levels of stress (Hoffman, Sweeney, individuals with ASD were well adjusted, but
Hodge, Lopez-Wagner, & Looney, 2009) which emphasised that the stress of having a sibling with
can have a significant impact on their quality of ASD cannot be overlooked.
life. Siblings can also experience significant chal- Comprehensive monitoring of outcomes
lenges and a number of factors may affect the should include the well-being of parents, sib-
dynamic of the relationship, continually evolving lings, and carers involved in the life of a young
and changing across the course of life (Orsmond person with ASD. Thus, for the overall
108 V. Eapen et al.

improvement, independent living outcomes, Paediatric Quality of Life Inventory


maladaptive behaviours as well as general (PedsQL)
well-being, family stress, coping and quality The Paediatric Quality of Life Inventory
of life, and other relevant measures are indi- (PedsQL) (Varni, Seid, & Rode, 1999) follows a
cated. Examples include Autism Treatment modular approach to measuring health-related
Evaluation Checklist (ATEC; Rimland & quality of life (HRQOL) in healthy children and
Edelson, 1999), Parent Stress Index (PSI: adolescents and those with acute and chronic
Abidin, 1990a), and Quality of Life in Autism health conditions. The PedsQL Measurement
(QoLA: Eapen, Črnčec, Walter, & Tay, 2014). Model integrates seamlessly both generic core
scales and disease-specific modules into one
The Depression Anxiety Stress Scales measurement system and different developmen-
The Depression Anxiety Stress Scales (DASS; tally appropriate (Ages 2–18; Child Self-Report
Lovibond & Lovibond, 1995) is a 21-item self- Ages 5–7, 8–12, 13–18; Parent Proxy-Report
report measure that assesses negative affect, gener- Ages 2–4, 5–7, 8–12, 13–18) forms are available.
ating separate scores for the subscales of While disease-specific modules are available for
Depression, Anxiety, and Stress. The Anxiety scale some of the chronic health conditions, there is no
assesses what causes arousal, what situations cause specific module for autism.
anxiety, and what experiences have led to this
effect. The Stress scale assesses whether the person The Quality of Life in Autism
has difficulty relaxing, nervous arousal, and being The Quality of Life in Autism (QoLA) contains
easily upset/agitated, irritable/over-reactive, and two subscales to be completed by the parent or
impatient. Higher scores indicate greater symp- carer: Part A, with questions pertaining to overall
tomatology. The DASS-21 has been shown to have quality of life, and Part B, with questions asking
excellent psychometric properties (Antony, parents to rate the impact of autism-specific
Bieling, Cox, Enns, & Swinson, 1998; Henry & symptoms of their child on parental daily activi-
Crawford, 2005; Lovibond & Lovibond, 1995). ties. A preliminary study showed good psycho-
metric properties with strong internal consistency
The Parenting Sense and convergent validity (Eapen et al., 2014) and
of Competence Scale self-report version is also available.
The Parenting Sense of Competence scale
(PSOC; Johnston & Mash, 1989) includes 17
items designed to measure parental self-efficacy. Conclusions and Directions
Based on the factor structure found in Australian for Future Research
populations (Rogers & Matthews, 2004), the
scale generates scores on three subscales: Fit-for-purpose monitoring of individuals with
Satisfaction, Efficacy, and Interest, with higher ASD and their families offers the opportunity to
scores indicative of higher levels of parental sat- individually tailor interventions, with timely
isfaction and self-efficacy. The PSOC has been adaptations based on emerging skills and diffi-
found to have strong psychometric properties culties, identify commonly occurring problems
(Rogers & Matthews, 2004). early, with the hope of preventing or minimising
any negative impact, and to ensure that every
Parenting Stress Index individual with autism and their family are
Parenting Stress Index Short Form (PSI-SF) reaching their potential for function and com-
(Abidin, 1990b): The PSI Short Form (PSI/SF) munity participation. Along the way we are
has 36 items written at a fifth-grade reading level, likely to also discover new information about
for parents of children 12 years and younger. The how to build on the strengths of individuals with
PSI/SF yields a Total Stress score from three autism and how the environment and commu-
scales: Parental Distress, Parent–Child nity can accommodate difference to minimise
Dysfunctional Interaction, and Difficult Child. avoidable disability.
6 Monitoring Progress in Autism Spectrum Disorder 109

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Implications of ICD and DSM
on Screening, Diagnosis, 7
and Monitoring

Sarah J. Carrington

although subtly different to the Wing and Gould


General Introduction triad, was included in subsequent editions of both
ICD (ICD-10) and DSM (DSM-IV and DSM-IV-
As outlined in earlier chapters of this volume, our TR). In 2014, the latest edition of DSM (DSM-5) was
understanding of autism has continued to evolve published and introduced a number of changes rela-
since the original description of the condition by Leo tive to both its previous edition (DSM-IV-TR) and
Kanner in 1943. Once considered to be a form of the current edition of ICD (ICD-10). Any change to
childhood schizophrenia, autism was only recog- the diagnostic criteria can have implications for the
nised as a distinct clinical condition by the World diagnosis and assessment of autism; for example, it
Health Organisation (WHO) in 1979, in the ninth can affect which behaviours contribute towards a
edition of the International Classification of Disease diagnosis and, therefore, who meets criteria for a
(ICD). Similarly, in the third edition of the Diagnostic diagnosis. The changes introduced in DSM-5 have
and Statistical Manual of Mental Disorders (DSM- proved to be particularly controversial, with con-
III), the American Psychiatric Association (APA) cerns over a narrowing of the criteria, which could
described infantile autism as being characterised by potentially result in under-diagnosis compared with
a lack of responsiveness to others, absent or abnor- DSM-IV-TR, and concerns that there may be a loss
mal language, and unusual responses to aspects of of support for those with DSM-IV-TR, but not DSM-
the environment (including resistance to change or 5 diagnoses. Furthermore, these changes may also
attachment to objects), all of which would mani- influence revisions to ICD-10, which are expected
fest within the first 30 months. Around this time, to be published in 2017. This chapter lays out the
Lorna Wing and Judith Gould proposed that autism current situation as it applies to differential diagnosis.
could be characterised by a triad of social impair- The implications of new changes in diagnostic cri-
ments, affecting social interaction, social communi- teria will be discussed in the context of the assess-
cation, and social imagination (Wing & Gould, ment process.
1979). The notion of a triad of impairments,

Current Descriptions
S.J. Carrington (*)
School of Life and Health Sciences, Aston University,
and Diagnostic Criteria
Birmingham, UK
Until relatively recently, the descriptions and
Wales Autism Centre, School of Psychology, Cardiff
University, Cardiff, UK diagnostic criteria for autism included in both
e-mail: s.carrington@aston.ac.uk ICD and DSM were almost identical, differing

© Springer International Publishing Switzerland 2016 117


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_7
118 S.J. Carrington

primarily in the terms used; while ICD-10 (WHO, Asperger syndrome,2 childhood disintegrative
19931) refers to childhood autism, DSM-IV-TR disorder, Rett’s disorder, and PDD not otherwise
(APA, 2000) referred to autistic disorder. In this specified (PDD-NOS). The latter category in
chapter, the term autism will be used to refer to DSM-IV-TR included presentations of autism that
both autistic disorder and childhood autism. In were atypical in the age of onset or had atypical
both ICD-10 and DSM-IV-TR, autism fell within or subthreshold symptomatology. In ICD-10,
the category of pervasive developmental disorder however, there are three diagnoses intended to
(PDD) and the descriptions were based on a triad capture these individuals: atypical autism (in
of impairments, which partially overlapped with both age of onset and symptomatology), other
the triad described by Wing and Gould. The triads PDDs, and PDD unspecified.
in both ICD-10 and DSM-IV-TR described impair- The latest edition of the DSM (DSM-5) has
ments in social interaction and social communica- introduced changes to the clinical description and
tion, but rather than the social imagination diagnostic criteria for autism. First, DSM-5 has
impairment described by Wing and Gould, ICD- moved away from the triad of impairments and
10 and DSM-IV-TR specified the presence of now defines just two domains: impaired social
restricted, repetitive, and stereotyped patterns of communication behaviour and the presence of
behaviour, interests, or activities. Although restricted and repetitive patterns of behaviours,
impairments in imagination were included in the interests, or activities (RRBs). In reality, this is
ICD-10/DSM-IV-TR descriptions—within the more complex than simply combining the social
communication domain (see Fig. 7.1)—they were and communication domains from DSM-IV-TR,
not considered to be essential for diagnosis; unlike as more repetitive aspects of communication
the Wing and Gould triad, it would be possible to such as stereotyped or repetitive speech, or ritual-
receive a diagnosis according to ICD-10/DSM-IV- ised greetings would be included within the RRB
TR without impaired imagination. Each domain domain of the DSM-5 dyad. There is evidence
of the ICD-10/DSM-IV-TR triad is associated supporting the move from a triad to the dyad,
with a number of subdomains, or subcategories of with confirmatory factor analysis indicating that
behaviour, and impairment is required in at least two-factor models emulating the DSM-5 model
six subdomains to qualify for a diagnosis fitted the data better than models based on the
(Fig. 7.1). Moreover, the criteria specify that DSM-IV-TR triad (Guthrie, Swineford, Wetherby,
impairment must be evident within the first & Lord, 2013; Harstad et al., 2015; Mandy,
36 months in either social interaction, language as Charman, Puura, & Skuse, 2014; Mandy,
used for social communication, or symbolic or Charman, & Skuse, 2012). As with DSM-IV-TR,
imaginative play. both of the DSM-5 domains have a number of
In addition to autism, ICD-10 and DSM-IV-TR associated subdomains or subcategories of
described separate subgroups within PDD for behaviour; for example, social communication
impairments are characterised by a lack of social
emotional reciprocity, impaired non-verbal com-
munication, and difficulties in developing and
1
The WHO published a set of clinical descriptions and maintaining relationships (Fig. 7.2). DSM-5
diagnostic guidelines (1992) and a set of diagnostic crite- specified that an individual would need impair-
ria for research (1993). The diagnostic criteria for research ments in all three of the social communication
were derived from the clinical guidelines and were inten-
subdomains and at least two of the four restricted
tionally more restrictive, to allow the identification of
groups of individuals with relatively homogeneous symp- and repetitive patterns of behaviour subdomains.
tom profiles. Due to the restrictive nature of the criteria, in
clinical practice they were intended to be used alongside
2
the more descriptive clinical guidelines to allow the iden- DSM-IV-TR referred to Asperger’s disorder, while in
tification of more atypical, yet still clinically significant ICD-10 the term Asperger’s syndrome is used. In this
cases. The significance of clinical judgement will be con- chapter, the term Asperger syndrome will be used to refer
sidered in the discussion section of this chapter. to both.
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 119

Fig. 7.1 The ICD-10 and DSM-IV-TR triad of impairments

Fig. 7.2 The DSM-5 diagnostic criteria for autism spectrum disorder (ASD)

individuals, certain symptoms may not be evident


DSM-5 has a somewhat more flexible approach until the demands of the social environment
to the age at which symptoms would need to be placed on an individual (e.g. school, college, or
present for diagnosis. The new criteria specify work) exceed their level of functioning. The new
that symptoms must be present in the early devel- criteria also include a three-level rating of severity
opmental period, but acknowledge that in some for each of the two domains, which can be used to
120 S.J. Carrington

describe an individual’s current symptomatology. onset of symptoms in the early developmental


Level one is assigned for individuals requiring period. Given the higher-order nature of these
support, level two for those who require substan- deficits, language must be sufficiently developed
tial support, and level three for those requiring to allow their detection; consequently, SCD
very substantial support. It is recognised that would not typically be diagnosed before
these severity ratings may vary over time and four years. The inclusion of non-verbal commu-
across contexts, and that an individual may in fact nication in the descriptions is an expansion on the
score below level one. Finally, clinicians are asked traditional definition of pragmatic language dis-
to specify whether there is accompanying intel- order, although there is still likely to be overlap
lectual or language impairment. between these conditions.
Perhaps one of the most controversial changes Each of the changes introduced in DSM-5 has
has been that in DSM-5, the previously distinct the potential to impact on who will receive a
diagnostic categories of autistic disorder, diagnosis, as well as the assessment process and
Asperger syndrome, childhood disintegrative dis- provision of services and support. Indeed, there
order, and PDD-NOS are now included under the has been much concern that DSM-5 represents a
single umbrella term autism spectrum disorder narrowing of the diagnostic criteria that will lead
(ASD). Rett syndrome is no longer included in to under-diagnosis and a subsequent loss of sup-
DSM-5 as it is considered as having a known port for individuals who currently have a diagno-
genetic aetiology. Wing, Gould, and Gillberg sis. In this chapter, the research exploring the
(2011) suggested it may be helpful to retain a list efficacy of the DSM-5 criteria will be reviewed
of subgroup names that had existed in DSM- and the potential impact of changes to the criteria
IV-TR along with a brief description. While this on the use of standardised diagnostic assessments
concept was not adopted in the final DSM-5 crite- will be discussed. The implications of the loss of
ria, the severity rating may have been intended to the DSM-IV-TR subtypes such as Asperger syn-
help identify the level of need an individual may drome and PDD-NOS will be discussed together
have, thus facilitating provision of appropriate with the introduction of the new diagnostic cate-
support. The potential implications of the removal gory of social (pragmatic) communication disor-
of the subgroups, and particularly for Asperger der. Finally, dimensional versus categorical
syndrome, will be discussed in more detail below. approaches to diagnosis (and research) will be
DSM-5 has also seen the introduction of a new considered.
category: social (pragmatic) communication dis-
order (SCD). SCD is described in DSM-5 as
being characterised by a difficulty in the ‘prag- Who Will Get a Diagnosis
matics, or social use of language and communi- of DSM-5 ASD?
cation’. It is primarily differentiated from ASD
by the presence of restricted and repetitive behav- The publication of the draft criteria for DSM-5
iours in ASD and their absence in SCD; however, generated considerable research investigating the
the condition is not simply characterised by the efficacy of the proposed guidelines. For diagnos-
social communication domain of the DSM-5 tic criteria to be effective, they must provide good
ASD dyad. Instead, SCD is characterised by per- levels of both sensitivity and specificity.
sistent difficulties in (1) using communication for Sensitivity refers to the ability of the criteria to
social purposes, (2) the ability to change commu- accurately identify individuals who should qual-
nication to match the context or needs of the lis- ify for a diagnosis; thus for DSM-5 to have good
tener, (3) following the rules of conversation or sensitivity relative to DSM-IV-TR/ICD-10, it
storytelling, and (4) understanding non-literal, would be expected that the majority of individu-
ambiguous, or inferred meanings. Deficits must als who met criteria for a diagnosis according to
limit communicative and social functioning, with DSM-IV-TR/ICD-10 would also meet the criteria
potential effects on academic achievement, and for DSM-5 ASD. Specificity on the other hand
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 121

refers to the ability of the criteria to exclude is consistent with previous evidence suggesting
individuals who should not receive a diagnosis; if that the descriptions may be too narrow to cap-
individuals who met criteria for DSM-IV- ture the full autism spectrum. For example, a
TR/ICD-10 conditions other than PDD or indeed study by Mayes, Black, and Tierney (2013)
individuals who had no clinical diagnoses met reported excellent sensitivity of the DSM-5 crite-
criteria for DSM-5 ASD, the criteria would have ria for both high and low functioning autism
low levels of specificity. Sensitivity and specific- groups in two samples of children, but poor sen-
ity can vary between 0 and 1, with higher values sitivity (between 0.20 and 0.28) for children who
indicating greater accuracy. Initial concerns met DSM-IV-TR criteria for PDD-NOS. In a sim-
regarding DSM-5 have largely been about the ilar study, Gibbs et al. (2012) reported that the
sensitivity of new criteria. majority of children in their sample who did not
meet criteria for DSM-5 ASD had received a
diagnosis of DSM-IV-TR PDD-NOS, while
Evidence of Reduced Sensitivity McPartland, Reichow, and Volkmar (2012)
reported low levels of sensitivity for children
Early studies focusing on the DSM-5 criteria meeting DSM-IV-TR criteria for Asperger syn-
largely found a concerning loss of sensitivity drome or atypical autism (including PDD-NOS).
compared with the DSM-IV-TR criteria. This was explored further in a study of data col-
Typically this drop of sensitivity was found in lected with both children and adults conducted
the context of good levels of specificity (between by Young and Rodi (2013). They reported that
0.94 and 1.0). For example, Mattila et al. (2011) none of the individuals who had received a DSM-
and Gibbs, Aldridge, Chandler, Witzlsperger, IV-TR PDD-NOS diagnosis and just 56.1 % of
and Smith (2012) reported that strict application individuals with Asperger syndrome met criteria
of the draft DSM-5 criteria resulted in reduced for DSM-5 ASD, compared with 73.7 % of those
diagnostic sensitivity for children (a loss of 54 % with autistic disorder.
and 23 % respectively) when compared with As well as varying according to diagnostic
DSM-IV-TR. Other studies that applied the two subgroup, research has also looked at the sensi-
sets of criteria to the same individuals similarly tivity of the new criteria in individuals with dif-
found reduced sensitivity in at-risk toddlers ferent ability levels. This work has suggested that
(Matson, Kozlowski, Hattier, Horovitz, & Sipes, the sensitivity of the DSM-5 criteria may vary as
2012) and adults with intellectual disability a function of IQ. In the study previously described
(Matson, Belva, Horovitz, Kozlowski, & by McPartland et al. (2012), only 46 % of those
Bamburg, 2012). A more recent study explored who met criteria for DSM-IV-TR PDD with an IQ
this further and reported a loss of 23 % sensitiv- above 70 met the DSM-5 criteria for ASD. In
ity for DSM-5 compared with DSM-IV-TR in a another example, Taheri and Perry (2012) found
sample of children aged between 16 months and that while only 22.2 % of their sample who had
18 years, but with some preliminary evidence an IQ above 70 met criteria for DSM-5 ASD,
suggesting that sensitivity may be lower for 89.7 % of individuals with an IQ below 40 met
those children under the age of 30 months the criteria. Not all studies investigating IQ, how-
(Harstad et al., 2015). Importantly, this study ever, have found a significant effect; while
also suggested that children who met criteria for Harstad et al. (2015) reported only a trend indica-
DSM-IV-TR autistic disorder were significantly tive of lower sensitivity for higher ability indi-
more likely to meet criteria for DSM-5 ASD than viduals, Young and Rodi (2013) found no
those who met DSM-IV-TR criteria for PDD- significant relationship between IQ and meeting
NOS or Asperger syndrome. criteria for DSM-5 ASD. Moreover, a recent
The finding of comparatively reduced sensi- meta-analysis found that while the sensitivity of
tivity of the DSM-5 criteria to PDD-NOS and the DSM-5 criteria may be reduced for DSM-IV-
Asperger syndrome compared with ‘core’ autism TR autistic disorder and PDD-NOS, it was not
122 S.J. Carrington

significantly reduced for individuals who met the Swineford, Thurm, Baird, Wetherby, & Swedo,
DSM-IV-TR criteria for Asperger syndrome 2014). Whether individuals with DSM-IV-TR
(Kulage, Smaldone, & Cohn, 2014). PDD-NOS best meet the DSM-5 criteria for ASD
According to DSM-IV-TR, a diagnosis of or SCD—or neither—remains to be seen as fur-
PDD-NOS is given when an individual has either ther research is conducted following the publica-
(a) impairments in reciprocal social interaction tion of the DSM-5 guidelines. However, the
together with impaired communication or (b) potential implications should these individuals
impairments in reciprocal social interaction and qualify for the SCD diagnosis will be discussed
the presence of repetitive or restricted interests. below.
However, based on a study of 66 individuals who Overall, the findings reviewed so far in this
met criteria for PDD-NOS, Mandy, Charman, chapter lend support to the view that the DSM-5
Gilmour, and Skuse (2011) found that the major- descriptions may be too narrow to capture the
ity of people (64 of the 66 cases seen) had broad range of subgroups included within DSM-
impaired social interaction and communication IV-TR. While some researchers may argue that
in the absence of repetitive and restricted behav- this could in fact reflect the overly inclusive
iours and interests (type (a), above). Given that nature of DSM-IV-TR rather than an overly
DSM-5 required the presence of RRBs for a diag- restrictive approach by DSM-5, several studies
nosis of DSM-5 ASD, and assuming that the have indicated that those individuals missed by
majority of individuals with PDD-NOS do not DSM-5 had significantly higher autism symptom
have these behaviours, as described by Mandy severity than individuals with non-autism clinical
et al., it is perhaps not surprising that so many diagnoses and individuals with no clinical diag-
studies have reported reduced sensitivity of the noses (Matson, Belva, et al., 2012; Matson,
DSM-5 criteria for PDD-NOS. One suggestion Hattier, & Williams, 2012; Matson, Kozlowski,
emerging from the DSM-5 field trials was that the et al., 2012; Mayes et al., 2013; Worley &
apparently reduced prevalence of DSM-5 ASD Matson, 2012). The studies presented so far are,
compared with the combined prevalence of DSM- therefore, consistent with the idea that DSM-5
IV-TR autistic disorder, Asperger syndrome, and may underdiagnose individuals with significant
PDD-NOS may be accounted for by movement clinical need consistent with autism, although
into the newly defined social (pragmatic) com- some of those who do not meet criteria for ASD
munication disorder (SCD) category (Regier may meet criteria for SCD. It is important to
et al., 2013). However, this was not universally note, however, that not all studies have found
accepted, and Bishop and Norbury (2002) noted reduced sensitivity for the DSM-5 criteria, and
that the majority of children they identified with this literature will be reviewed in the next
a pragmatic language impairment3 used stereo- section.
typed language, with a minority also reporting
unusual sensory interests. Both sensory symp-
toms and the more repetitive and stereotyped Evidence of Good Sensitivity, but
aspects of communication impairments are Poor Specificity
included within the RRB domain of DSM-5 ASD;
Norbury, therefore, suggested that some children Following the release of the draft DSM-5 criteria,
with PDD-NOS may continue to receive an ASD the earliest research findings suggested that the
rather than SCD diagnosis (Norbury, 2014; new criteria may lack sensitivity whilst maintain-
ing good levels of specificity. In the following
3
For discussion of the overlap between SCD and more tra- years, additional large-scale studies were con-
ditionally defined pragmatic language impairments, see ducted that reported the opposite pattern; that is
Norbury (2014) Practitioner Review: social (pragmatic)
good levels of sensitivity but poor specificity. The
communication disorder conceptualization, evidence, and
clinical implications. Journal of child Psychology and three studies that first reported good levels of sen-
Psychiatry, 55(3), 204–216. sitivity for DSM-5 ASD mapped items from two
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 123

well-established clinical tools onto the DSM-5 samples independently (varying between 0.76
criteria (Barton, Robins, Jashar, Brennan, & Fein, and 0.94). The inclusion of data collected using
2013; Huerta, Bishop, Duncan, Hus, & Lord, the ADOS largely resulted in improved sensitiv-
2012; Mazefsky, McPartland, Gastgeb, & ity. Specificity, however, was unacceptably low,
Minshew, 2013). The tools that they used were both for the sample as a whole (0.53) and in the
the Autism Diagnostic Interview (ADI-R; Lord, two samples where these data were available
Rutter, & Le Couteur, 1994) and the Autism (0.49 and 0.63). In a similar study of toddlers
Diagnostic Observation Schedule (ADOS; Lord (Barton et al., 2013), sensitivity of the combined
et al., 2000), both of which were developed spe- ADI-R and ADOS data was 0.84 when applying
cifically to help guide diagnosis according to the the same principles reported by Huerta et al.
DSM-IV-TR criteria for autism and PDD. Both (2012), but specificity was again unacceptably
the ADI-R and the ADOS include diagnostic low (0.55). These two studies, therefore, reflect a
algorithms, which can be run to determine tendency to over-diagnose ASD.
whether an individual meets the criteria for One way in which the diagnostic performance
autism, and the ADOS includes an additional of DSM-5 could be adjusted would be to change
classification of autism spectrum, which relates the rules governing both the pattern of symptoms
to the broader category of PDD. When using needed for a diagnosis (the symptom profile) and
information collected with both tools, Mazefsky how many symptoms are needed. Both Huerta
et al. (2013) found sensitivity of 0.88 in a sample et al. (2012) and Barton et al. (2013) explored
of 498 children and adults with clinical DSM-IV- whether adjusting these rules could improve the
TR autism (or PDD) diagnoses. This high level of diagnostic performance of the DSM-5 criteria
sensitivity could be further improved (to 0.93) by relative to DSM-IV-TR. Huerta et al. investigated
including additional items measuring repetitive the effect of increasing the number of items an
behaviours that were not included in the diagnos- individual would need to score on in each subdo-
tic algorithm. Despite these excellent levels of main of the DSM-5 criteria from one to two. This
sensitivity, it was not possible to assess the true adjustment would be expected to improve speci-
efficacy of the DSM-5 criteria in this study; this ficity, but could at the same time reduce sensitiv-
was because the specificity of the criteria could ity, and indeed this was what was found;
not be explored as the sample did not include sensitivity dropped from 0.91 to 0.88 and
individuals with non-PDD diagnoses. In this although specificity was improved, this improve-
study, therefore, it was not possible to be certain ment was only marginal (from 0.53 to 0.66). In a
that the high levels of sensitivity reported did not second adjustment focusing more on the symp-
reflect a tendency for individuals with any form tom profile, Huerta et al. explored the effect of
of developmental disability—or indeed typical decreasing the total number of subdomains in
development—to meet the criteria. which an individual needed impairment, so that
Huerta et al. (2012) conducted a large-scale an individual would need a minimum of two
study of three samples of children, which symptoms in either (a) all three social communi-
included a total of 4,453 children with DSM-IV- cation subdomains and at least one or more of the
TR PDD clinical diagnoses as well as 690 with RRB subdomains or (b) at least two of the three
non-PDD diagnoses. When analyses were based social communication subdomains and at least
on parent-report (ADI-R) data only and using the two of the four RRB subdomains. This adjust-
rule that an individual would need impairment on ment increased sensitivity to 0.99 but further
one item in all three of the social communication reduced specificity to 0.42.
subdomains and in at least two of the four RRB Barton et al. (2013) conducted more detailed
subdomains, sensitivity of the DSM-5 criteria investigation of the impact of varying the DSM-5
was 0.91 for the sample as a whole. Sensitivity rules, exploring different combinations of thresh-
was generally lower for non-autism PDD and olds for the individual subdomains (the number
Asperger syndrome when explored in the three of symptoms) and also the number of subdomains
124 S.J. Carrington

required (the symptom profile). The solution that more individuals with Asperger syndrome. One
they found to achieve the best combination of potential limitation of this study, however, was
sensitivity (0.93) and specificity (0.74) required that the comparison group included siblings of
toddlers to score on at least one item in one of the children with autism who had typical develop-
RRB subdomains and above a statistically ment as well as those with non-autism clinical
defined threshold in at least two of the social diagnoses. As such, this sample was not a typical
communication subdomains. The most frequent clinical comparison group, and this may have
adjustment to the DSM-5 rules that has been somewhat inflated the reported specificity in
explored, however, has been the requirement that comparison with other studies.
individuals need exhibit impairment in just two Using a diagnostic instrument called the
rather than all three of the social communication Diagnostic Interview for Social and
subdomains (symptom profile). This adjustment Communication Disorders (DISCO; Leekam,
has typically been reported to improve sensitivity Libby, Wing, Gould, & Taylor, 2002; Wing,
(Frazier et al., 2012; Huerta et al., 2012; Matson, Leekam, Libby, Gould, & Larcombe, 2002),
Hattier, et al., 2012; Mayes et al., 2013; Wilson researchers and clinicians developed an algorithm
et al., 2013) with only a minimal loss of specific- based on the draft DSM-5 criteria that had good
ity (Matson, Hattier, et al., 2012; Mayes et al., levels of sensitivity (0.85) and specificity (0.89)
2013). for autism in comparison with an entirely clinical
As outlined earlier in this chapter, effective control group, which included children with either
diagnostic criteria should have good levels of language impairment or intellectual disability
both sensitivity and specificity. Although altera- (Kent, Carrington et al., 2013). When typically
tions to the DSM-5 rules should certainly be con- developing children were also included in the
sidered if research supports the need to do so, the comparison sample, sensitivity and specificity
next section will review evidence suggesting that was 0.85 and 0.95 respectively, which is compa-
it may be possible to achieve good levels of sen- rable to the figures reported by Frazier et al.
sitivity and specificity using the DSM-5 rules as (2012). Kent, Carrington et al. (2013) also
they currently stand. explored the effect of relaxing the DSM-5 rules so
that an individual needed impairment in two of
the three social communication subdomains. As
Evidence of Good Sensitivity in other studies, improved sensitivity was found
AND Specificity (0.96 compared with 0.85); however, this improve-
ment was not statistically significant. Moreover,
Two studies to date have reported good levels of specificity was decreased (0.69 compared with
sensitivity and specificity of the DSM-5 criteria 0.89 when only clinical controls were included),
without adjustment to the rules. Using question- although this was again not significant. Finally,
naire data collected from a large registry of sib- the sensitivity of the algorithm did not vary as a
lings where at least one child in the family has an function of age or ability level in a sample of 200
autism diagnosis, Frazier et al. (2012) reported children (n = 112; 68 higher ability (HFA); 44
that the sensitivity of the DSM-5 criteria relative lower ability (LFA)), adolescents (n = 33; 19 HFA;
to clinical judgement was 0.81 with specificity of 14 LFA), and adults (n = 45; 33 HFA; 12 LFA).
0.97. Although this sensitivity value is commonly Although the results from this study support the
accepted as good, the authors noted that adjusting DSM-5 criteria for ASD, it is important to note
the DSM-5 rules as described above (i.e. impair- that the analyses were conducted on relatively
ment in two rather than all three social communi- small, well-defined research samples in which the
cation subdomains) further improved sensitivity majority of individuals in the autism group had
to 0.93 with only a minimal decrease in specific- diagnoses of childhood autism. A clear test of
ity (0.95 rather than 0.97). The improved level of their validity will be to investigate their accuracy
sensitivity was attributed to the identification of when used in standard clinical care pathways.
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 125

Summary 2012). One limitation in particular that may be


relevant to on-going diagnosis and assessment
In summary, research focusing on the impact of was that the data studied by McPartland et al.
revisions made in DSM-5 has raised concerns may not have included a sufficient range of infor-
that the new criteria may be overly restrictive, mation to fully map the DSM-5 criteria.
with a lack of sensitivity particularly for those McPartland et al. analysed data that were col-
who met criteria for the non-autism PDD sub- lected during the field trials for DSM-IV-TR.
groups within DSM-IV-TR. The majority of stud- These data, therefore, were based on the DSM-
ies have provided evidence supporting this III-R and DSM-IV-TR descriptions, and conse-
concern, and there has been some discussion as quently, were limited to the information included
to whether the difference between the two sets of in those criteria. While there is indeed consider-
criteria may be due to overly inclusive descrip- able overlap in the content of the descriptions in
tions in DSM-IV-TR rather than overly restrictive DSM-IV-TR and DSM-5, there are discrepancies;
descriptions in DSM-5. Evidence of higher symp- for example, DSM-5 includes an additional focus
tom severity in those missed by DSM-5, however, on sensory symptoms, which form an entire sub-
may suggest the apparent loss of sensitivity of domain of the RRB domain.
DSM-5 should not be disregarded, regardless of The criticism levelled at the McPartland et al.
whether this loss reflects ‘over-diagnosis’ by study can, to varying degrees, be applied to sev-
DSM-IV-TR. There are studies, however, that eral of the studies reviewed above. For example,
have reported good levels of sensitivity. Although Matson, Belva, et al. (2012) acknowledged that
these studies typically reported poor specificity in their study of adults with intellectual disability,
and, therefore, still indicated less than optimal they did not have sufficient data to fully map the
performance of the DSM-5 criteria, there is some DSM-5 criteria; more specifically, they did not
preliminary evidence that it may be possible to have information regarding hypo- and hyper-
achieve good levels of both sensitivity and reactivity to sensory input. Studies in which
specificity. items were mapped from the ADI-R and ADOS
The variability in the research findings to date onto the DSM-5 criteria may have faced similar
is not reassuring at a time when families and cli- limitations. As described above, both the ADI-R
nicians are looking for resolution of the concerns and ADOS were developed to guide diagnosis
regarding the diagnostic criteria. One explanation according to the ICD-10/DSM-IV-TR criteria.
for the different findings in these studies may be Although Huerta et al. (2012) reported that there
that the potential to fully investigate the accuracy were sufficient ADI-R items to fully map the
of the DSM-5 criteria may be limited by the diag- DSM-5 criteria, the same was not true of the
nostic tools that are used to gather information ADOS; there were no ADOS items that fit with
about individuals within the sample. This possi- the descriptions of hypo- or hyper-reactivity to
bility will be explored in the next section. sensory input, and just one item that mapped to
the subdomain regarding highly restricted, fix-
ated interests. Both Huerta et al. (2012) and
The Impact of Diagnostic Tools Mazefsky et al. (2013) found better sensitivity
on the Reported Sensitivity when ADOS and ADI-R data were pooled, and
and Specificity of DSM-5 Mazefsky et al. found that sensitivity could be
further improved by including additional items
In response to one of the earlier studies raising from the ADI-R measuring RRBs that were not
concern regarding the new DSM-5 criteria included in the diagnostic algorithm. Thus, these
(McPartland et al., 2012), the DSM-5 Workgroup two studies indicated that the combination of
for Neurodevelopmental Disorders published a ADI-R and ADOS data was necessary to best map
commentary in which they raised a number of the DSM-5 criteria, and in so doing, demonstrate
potential limitations of the paper (Swedo et al., good levels of sensitivity.
126 S.J. Carrington

The two studies that reported the best balance drome. When developing a new DISCO algorithm
between sensitivity and specificity were arguably according to the DSM-5 ASD criteria, items from
able to do so as the data they used were not so the DISCO were mapped to the descriptions
constrained by DSM-IV-TR (Frazier et al., 2012; offered by DSM-5. All items from the interview
Kent, Carrington et al., 2013). Frazier et al. that were considered relevant were included and
(2012) mapped items from two parent-report their inclusion was reviewed by independent cli-
questionnaires—the Social Responsiveness Scale nicians. The number of DISCO items included in
(SRS; Constantino, 2002; Constantino et al., each subdomain varied between six and 14, with
2003) and Social Communication Questionnaire ten items included in the subdomain measuring
(SCQ; Rutter, Bailey, & Lord, 2003)—to the reactivity to sensory input. The number of items
DSM-5 criteria. Although the SCQ was devel- within each subdomain allowed for a relatively
oped as a companion measure for the ADI-R large degree of variability in the clinical presen-
(Lord et al., 1994) and may, therefore, face the tations that could still meet criteria for a diagno-
same limitations as the ADI-R, the SRS primarily sis of DSM-5 ASD. Unlike the majority of
measures reciprocal social behaviours; items studies, the threshold for each subdomain was
relating to communication and restricted or ste- determined statistically. The only other study that
reotyped behaviours or interests are included, but adopted a statistical approach to setting the
those items emphasise the impact of those behav- thresholds was Barton et al. (2013), who used
iours on social behaviour. The SRS, therefore, is receiver operating characteristic (ROC) curves to
less closely tied to the DSM-IV-TR triad of identify the highest threshold that maintained
behaviours than the SCQ, although scores on the sensitivity at or above 0.9. A similar approach
SRS correlate significantly with the ADI-R was adopted by Kent, Carrington et al. (2013);
(Constantino et al., 2003). Importantly, when ROC curve analyses were conducted to identify
mapping items from the two measures to the the threshold that maximised specificity while
DSM-5 criteria, Frazier et al. predominantly used maintaining the highest possible sensitivity for
items from the SCQ specifically because the that threshold. It was argued that the inclusion of
measure was more closely tied to the DSM-IV-TR sufficient items to enable a variety of clinical pre-
criteria. They argued that this provided a stronger sentations to be represented, together with the
test of the efficacy of DSM-5 than would be use of statistically defined thresholds, allowed
gained by relying on a tool (the SRS) that was not good levels of sensitivity and specificity to be
developed according to any specific diagnostic achieved.
criteria. Overall, the studies reviewed above highlight
In contrast, Kent, Carrington et al. (2013) that accurate diagnosis of DSM-5 with good lev-
argued that the high levels of sensitivity and els of both sensitivity and specificity may be
specificity of the DSM-5 criteria found using an dependent on the use of appropriate diagnostic
algorithm developed from the DISCO were instruments. More specifically, instruments with
achieved precisely because the development of scope to assess behaviours beyond those
the DISCO was not based on specific diagnostic described in DSM-IV-TR will best enable accu-
criteria. The DISCO is a 320-item clinical inter- rate measurement of the DSM-5 criteria. These
view tool that, like the ADI-R, is typically con- findings, therefore, have important implications
ducted with a parent or a carer. The interview was for diagnosis and assessment. While early studies
developed based around the concept of an autism suggest that the DISCO may provide sufficient
spectrum, and due to the wide range of behav- information to enable detailed mapping of the
iours it assesses, it is possible to run a range of DSM-5 criteria resulting in good sensitivity and
algorithms, including those to guide in the diag- specificity, further validation of the diagnostic
nosis of Wing and Gould’s ASD and Gillberg’s algorithm for DSM-5 in clinical samples is essen-
Asperger syndrome as well as DSM-IV- tial. The Developmental, Dimensional, and
TR/ICD-10 autistic disorder and Asperger syn- Diagnostic Interview (3Di; Skuse et al., 2004) is
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 127

another well-established clinical interview tool may, therefore, be more vulnerable to changes in
that has been used to investigate the DSM-5 crite- the diagnostic criteria. The following paragraph
ria. Specifically, data collected using the 3Di has provides an overview of the range of question-
been used to explore the dyadic domain structure naires and interviews which can be used to
described in DSM-5 (Mandy et al., 2012). The prospectively identify ASD behaviours.
3Di consists of 120 items that form 12 scales, A number of questionnaire and checklist mea-
corresponding to the 12 ICD-10/DSM-IV-TR sures have been designed to prospectively detect
subdomains. Confirmatory factor analysis indi- traits and signs early in childhood, before a full
cated a better fit for a two-factor model compared diagnosis of ASD is made. These include the
with the triadic model in DSM-IV-TR, with evi- Checklist for Autism in Toddlers (CHAT; Baron-
dence of stronger factor loading in autism com- Cohen, Allen, & Gillberg, 1992), the Modified
pared with broader autism phenotype groups. CHAT (M-CHAT; Robins, Fein, Barton, & Green,
Moreover, the inclusion of an additional sensory 2001), and the Early Screening for Autistic Traits
scale consisting of five items from within the Questionnaire (ESAT; Swinkels et al., 2006).
interview did not decrease the fit of the model, Similarly, screening questionnaires have been
supporting the inclusion of these symptoms in developed for older children and adults, such as
the restricted and repetitive pattern of behaviour the SRS, and the Ritvo Autism Asperger
domain (Mandy et al., 2012). However, there Diagnostic Scale-Revised (RAADS-R; Ritvo
have as yet been no studies exploring the sensi- et al., 2011). Moreover, brief, age-specific ten-
tivity and specificity of the DSM-5 criteria using item ‘red flag’ questionnaires have been devel-
the 3Di, and therefore the potential use of the 3Di oped from the Autism Spectrum Quotient (AQ;
in diagnosing DSM-5 ASD is not yet known. It is Baron-Cohen, Wheelwright, Skinner, Martin, &
clear from studies using the ADI-R and ADOS Clubley, 2001) to help guide the referral of cases
that the combination of these instruments may for full diagnostic assessment (AQ-10; Allison,
provide good sensitivity, although relatively lim- Auyeung, & Baron-Cohen, 2012). Although
ited specificity, and the potential benefits of these measures were not typically developed
including information from other sources in order based solely on the ICD-10/DSM-IV-TR criteria
to improve specificity must be investigated. in the same way as the ADI-R for example, the
sensitivity and specificity of these measures
according to the DSM-5 criteria has not been
Impact of the Changes explored. One exception to this is a recent study
for Screening and Guiding of the DISCO, in which a set of 14 items were
Diagnosis identified that had excellent sensitivity and speci-
ficity according to both the DSM-IV-TR/ICD-10
The previous section detailed how current diag- and DSM-5 criteria; it was suggested, therefore,
nostic instruments may be limited in their ability that similarly to the AQ-10, this short interview
to gather sufficient information to fully map the set (the DISCO Signposting Interview) had the
profile of DSM-5 ASD, and that this in turn could potential to help guide referral for further assess-
limit their utility in diagnosis according to these ment (Carrington et al., 2015).
criteria. However, none of these instruments were Assuming that the primary aim of screening
designed to be used in isolation and none should measures (such as the ESAT ) or brief measures
over-rule clinical judgement; consequently stan- intended to guide referrals (e.g. the AQ-10 and
dardised clinical tools could continue to guide the DISCO Signposting Interview) is to highlight
diagnosis with clinicians including additional cases in need of more detailed assessment, it
information to ensure all aspects of the DSM-5 could be argued that agreement with specific
criteria can be considered. Measures used at early diagnostic criteria is not essential. Given evi-
stages of the assessment pathway may be less dence from studies using more comprehensive
informed by clinical judgement and their efficacy diagnostic assessments that DSM-5 is likely to
128 S.J. Carrington

lack sensitivity compared with DSM-IV-TR, it tive development. However, given growing rec-
seems likely that screening measures with ognition that autism often occurs with ‘normal’
demonstrable reliability and validity according to intelligence (i.e. IQ above 70), the distinction is
earlier versions of the diagnostic criteria will lack typically made based on the presence or absence
specificity rather than sensitivity for DSM-5. of language delay.
While the identification of false positives is The removal of the DSM-IV-TR subtypes in
clearly not a benefit, those individuals identified DSM-5 was based on a large body of research
by these measures but who do not meet criteria investigating whether these categories could be
for DSM-5 ASD are still likely to need further reliably distinguished. Studies using cluster anal-
assessment and support. Moreover, clinical ysis techniques have typically concluded that
guidelines such as the National Institute of although subgroups can be defined within sam-
Clinical Excellence in the UK do not recommend ples of individuals with PDD diagnoses, these
relying on the use of screening measures for the subgroups—or clusters—were based on factors
purpose of diagnosis. Arguably, the impact of the such as symptom severity and IQ rather than the
changes to DSM-5 on the use of these screening subtypes described in DSM-IV-TR/ICD-10 (e.g.
or signposting instruments will therefore be Kamp-Becker et al., 2010; Prior et al., 1998;
greatest in research, where such instruments are Ring, Woodbury-Smith, Watson, Wheelwright,
often used to ‘confirm’ clinical diagnosis when & Baron-Cohen, 2008). The literature more spe-
defining an autism participant sample. cifically investigating potential differences
between autism and Asperger syndrome has been
comprehensively reviewed elsewhere, with the
Differential Diagnoses/Subgroups majority of reviews concluding that there was not
sufficient evidence to reliably confirm or refute
No chapter exploring the impact of changes to the differentiation between the two conditions
the diagnostic criteria could not comment on the (e.g. Howlin, 2003; Macintosh & Dissanayake,
potential impact of removing the DSM-IV-TR 2004; Sanders, 2009). It is important to note,
PDD subgroups in DSM-5 ASD. In order to do however, that not all research has supported the
so, the history of the addition of subgroups to the notion of a single diagnostic category. For exam-
criteria will be reviewed along with the research ple, in a recent review, Tsai and Ghaziuddin
evidence that supports the addition and removal (2014) concluded that the evidence reviewed did
of these diagnostic groups. In particular, the not support the view of the DSM-IV-TR subtypes
removal of the diagnosis of Asperger syndrome as a single concept. However, studies that do not
has been highly controversial. In his original use the cluster-based analyses described above
description of what later came to be known as are subject to possible issues of circularity; that
Asperger syndrome, Hans Asperger considered is, they are investigating whether groups that
the cases he saw to be distinct from those with have been differentially diagnosed on the basis of
Kanner’s early infantile autism; he felt that the behaviour can then be distinguished on the basis
condition described by Kanner was a form of of that same behaviour. This is something of a
psychosis, while the characteristics he described simplification of a rather complex issue, but it
represented a stable personality trait. Lorna does raise another point regarding the mecha-
Wing, however, argued that although the term nisms by which a particular diagnosis is decided
Asperger syndrome could be helpful in explain- upon.
ing the particular difficulties experienced by indi- In a multi-site study, Lord et al. (2012)
viduals with the condition, it should be considered reported that differential best-estimate clinical
as part of the autism spectrum (Wing, 1981). In diagnoses of the different PDD subtypes—
DSM-IV-TR/ICD-10, Asperger syndrome is pri- including autism and Asperger syndrome—
marily differentiated from autism by a lack of varied significantly from site to site, despite
clinically significant delay in language or cogni- relatively consistent scores on standardised diag-
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 129

nostic instruments. Although the use of diagnostic given at different sites. As described above, it has
terms within sites was clearly not random, being been suggested that individuals who previously
based primarily on severity of observed social met criteria for DSM-IV-TR PDD-NOS may
communication difficulties, the finding of vari- qualify for a DSM-5 diagnosis of social (prag-
ability between sites raised questions as to how matic) communication disorder (SCD) rather
the different diagnostic terms were applied. One than DSM-5 ASD (e.g. Regier et al., 2013;
potential explanation proposed by Lord et al. was Swineford et al., 2014). As such, these individu-
that the use of diagnostic terms may have varied als may no longer be eligible for support that is
due to regional differences in available post- delivered specifically for those with an ASD
diagnostic support. The resulting variability in diagnosis, despite clear overlap in the social
how particular diagnoses are given would inevi- communication impairments of the two condi-
tably impact on research studies investigating tions. It will, therefore, be important to review
whether diagnostic subgroups can be reliably the provision of services for individuals receiv-
differentiated. ing the new SCD diagnosis. It is important to
Although research evidence largely supports note, however, that DSM-5 explicitly states that
the removal of the DSM-IV-TR subtypes, as individuals with a well-established DSM-IV-TR
described above, several studies raised concerns diagnosis of any of the PDD subtypes should
that DSM-5 may underdiagnose individuals who receive a diagnosis of ASD and thus, the provi-
received a DSM-IV-TR diagnosis of Asperger sion of services should not, in theory, be affected.
syndrome, PDD-NOS, or individuals with autism Despite concerns raised regarding PDD-NOS
and an IQ above 70. However, a meta-analysis of and evidence from meta-analysis (Kulage et al.,
these studies concluded that while DSM-5 may 2014) that this group rather than those with
lack sensitivity for autism and PDD-NOS, sensi- Asperger syndrome may be most at risk of under-
tivity was not significantly reduced for Asperger diagnosis by DSM-5, it is the exclusion of the
syndrome (Kulage et al., 2014). Moreover, the diagnostic category of Asperger syndrome that
results for studies exploring the sensitivity of has received the most attention, particularly in
DSM-5 as a function of IQ are mixed. The true the mainstream media. There is a strong cultural
impact of the changes in DSM-5 on the diagnosis identity associated with Asperger syndrome,
of individuals with ‘non-core’ autism presenta- with many referring to themselves as ‘Aspies’.
tions, such as Asperger-like or atypical presenta- Many individuals with Asperger syndrome con-
tions, remains to be seen and is dependent on the sider the differentiation from autism to be
collection of new research data using appropriate important in defining their abilities, and consider
diagnostic tools and techniques, as discussed the condition as a way of being, not a disability
above. If it were found that DSM-5 did have good (Vivanti et al., 2013). The potential impact of the
sensitivity across the subgroups, Vivanti et al. removal of the diagnostic category on this com-
(2013) argued that there was no reason to antici- munity should not be overlooked. Some clini-
pate that the loss of the subtype labels would cians may continue to use the term descriptively,
cause problems with the delivery of interven- and Wing et al. (2011) suggested that maintain-
tions, as there has been no evidence that the type ing the DSM-IV-TR subtype ‘labels’ may help
of intervention advocated should be based on the describe an individual’s ASD profile. The
DSM-IV-TR subtype. This is not to say that the approach adopted by DSM-5 was to include a
support offered to individuals may not be number of specifiers and severity ratings, such
affected, and indeed, this has been raised as a that an individual may have an individualised
serious concern. Services offered to individuals description. Thus, someone with an Asperger-
can vary according to their diagnosis, and indeed, like presentation could be diagnosed as ‘ASD,
there is regional variation in how this is actioned, with no intellectual or language impairment.
a fact that Lord et al. (2012) indicated may have Requires support for social communication and
influenced the best-estimate clinical diagnoses restricted and repetitive behaviours’. Clinicians
130 S.J. Carrington

could further specify the areas in which support cation systems into almost perfect agreement,
was needed. Although the cultural impact of the resulting in consistent diagnostic criteria for
loss of the ‘Aspie’ identity should not be over- PDDs internationally. Should the anticipated
looked, this move towards a more individualised revisions to ICD-10 diverge from the changes
diagnostic approach may be seen as a step introduced in DSM-5, particularly with regard to
towards ensuring that each individual’s profile of the inclusion/exclusion of the PDD subgroups,
strengths and difficulties can be adequately the comparability of research internationally will
described in order to best meet their needs, both be hindered. It should be noted, however, that the
in terms of clinical and social—including occu- groups overseeing the revisions to DSM-IV-TR
pational—support. How such an approach could and ICD-10 shared the common goal of harmon-
be best implemented remains to be seen. ising the two systems as far as possible, an aim
that is described in the introduction to the DSM-5
manual.
Implications for Research The use of standardised assessments may at
least partially address each of the issues raised
Changes to the diagnostic criteria for autism will here. Symptom severity scores can be calculated
also impact on the research community, and this from measures such as the ADI-R, ADOS,
impact is likely to be felt in a number of ways. DISCO, or 3Di. However, it is important to note
First, the changes introduced in DSM-5 will that having a high number of symptoms does not
affect the comparability of findings from studies necessarily qualify an individual for a diagnosis,
conducted before the change and those conducted and it is also the pattern or profile of impairment
after. If, as suggested by some of the studies that is significant. For example, two individuals
reviewed above, DSM-5 is likely to miss some may have the same number of symptoms, but
people who would previously have received a while one may have both social communication
diagnosis of DSM-IV-TR Asperger syndrome or impairments and restricted and repetitive behav-
PDD-NOS, then it could be argued that the find- iours, the second may only have impairment in
ings from research that recruited people with social communication behaviours and may,
DSM-IV-TR PDD diagnoses would not be spe- therefore, meet criteria for SCD rather than
cific to DSM-5 ASD. For example, some of the ASD. Moreover, as discussed above, the devel-
people who met DSM-IV-TR criteria for PDD- opment of some of the most widely used stan-
NOS may receive a DSM-5 diagnosis of SCD dardised assessments was based on the
rather than ASD and thus the findings from stud- DSM-IV-TR criteria and may not, therefore, ade-
ies based on the DSM-IV-TR criteria may reflect quately measure all of the behaviours described
a broader range of symptom profiles than those by DSM-5. There is a risk, therefore, that in
encompassed by DSM-5. This discrepancy may using such standardised measures to try and
be particularly important when attempting to ensure the continuity of research in this area,
track changes in prevalence rates over time. If research may in fact be biased more towards the
prevalence was found to plateau—at least tempo- DSM-IV-TR criteria.
rarily—or even decrease following the introduc- The removal of the DSM-IV-TR subtypes has
tion of DSM-5, the trend could reflect the changes largely been supported by research, as reviewed
to the diagnostic criteria rather than a true differ- above. Moreover, due to the lack of definitive evi-
ence in the number of individuals with clinically dence supporting a distinction, the use of the
significant symptoms who would previously have terms Asperger syndrome and high functioning
been diagnosed according to DSM-IV-TR. autism has overlapped to some extent in recent
Another concern is the potential for on-going dif- years. On-going research into potential endophe-
ferences in the international classification sys- notypes within the autism spectrum will remain
tems. The revisions that were introduced in important, however (e.g. Vivanti et al., 2013).
ICD-10 and DSM-IV-TR brought the two classifi- Given the broad range of variation within the
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 131

autism spectrum, better understanding of indi- than a set of categorically defined subtypes.
vidual differences could eventually help guide Moreover, in recognition of the ‘growing realisa-
more targeted intervention. The aim of identify- tion that co-existence of disorders and sharing of
ing how particular symptoms or patterns of symptoms across disorders … is the rule rather
symptoms are related to the underlying genetics than the exception’, Christopher Gillberg coined
and/or neurobiology is a common goal of much the term ESSENCE: Early Symptomatic
research focusing on neurodevelopmental disor- Syndromes Eliciting Neurodevelopmental
der. However, it has been suggested that this goal Clinical Examinations (Gillberg, 2010).
may have been hindered rather than aided by cat- ESSENCE refers to a collection of symptoms
egorical diagnoses such as those included in presenting within the first three years of life that
DSM and ICD. Moreover, there is evidence indi- are considered as markers of potential neurode-
cating that the DSM and ICD categories do not velopmental disorder such as ASD or PDD,
map well onto the emerging research evidence, ADHD, oppositional deviance disorder, specific
including evidence from neuroscience and genet- language impairment, learning disability (verbal
ics studies. The Research Domain Criteria frame- and non-verbal), tic disorder/Tourette’s syn-
work (RDoC; Casey, Oliveri, & Insel, 2014; Insel drome, bipolar disorder, behavioural phenotype
et al., 2010) from the National Institute of Mental syndromes (including 22q11 deletion syndrome
Health (NIMH) proposed that a dimensional and Fragile X syndrome), rare epilepsy syn-
approach could better advance our understanding dromes, and reactive attachment disorder. These
of the relationship between brain (or genes) and syndromes are all characterised by problems in
behaviour, including how that relationship was the areas of general development, communica-
linked with clinical phenomenology. It was sug- tion and language, social inter-relatedness, motor
gested that common constructs (such as anxiety coordination, attention, activity, behaviour,
or attention deficits) could be found underlying mood, and sleep. Given the organisation of ser-
multiple mental health diagnostic categories. As vices into discrete specialities, Gillberg argued
such, the starting point for research should not be that the precise diagnosis given to young children
a top-down approach beginning with the clinical may depend to some extent on the clinician who
diagnoses, but rather a bottom-up investigation of saw them. Moreover, the symptom profile may
the relationship between these constructs (or change over time. However, due to the overlap of
behaviours) and the brain (or genes) across the symptoms between the ESSENCE conditions,
full spectrum of ‘normal to abnormal’. The Gillberg suggested that even if an initial diagno-
RDoC framework, therefore, extends beyond the sis may no longer apply, the majority of children
investigation of endophenotypes within the DSM- would continue to meet criteria for one of the
5 ASD category; however a similar dimensional other ESSENCE conditions. For example, in his
approach could also be adopted to better under- 2010 paper, Gillberg described how 75 % of chil-
stand variation within ASD. dren who had received ASD diagnoses before the
age of three years still met criteria for ASD at
follow-up a few years later. Of the 25 % who no
A Dimensional Rather Than longer met the criteria for ASD, all met criteria
Categorical Approach: for another developmental disorder.
An Alternative to ICD/DSM? The structure of the ESSENCE framework is,
therefore, somewhat comparable to RDoC, with
Although the RDoC framework is intended, at the idea of common constructs (or symptoms)
least at this stage, as a research guide, the idea of underlying multiple clinical diagnoses. Moreover,
a more dimensional approach has also been con- Gillberg also suggested that differences in brain
sidered from a clinical angle, not least by Lorna function could contribute to the symptoms of
Wing and colleagues, who have long argued that ESSENCE and, therefore, overlap in multiple
autism is best represented as a spectrum rather conditions. The ESSENCE framework does not
132 S.J. Carrington

suggest that the diagnostic categories are redundant; the boundaries between disorders are more porous
indeed, while Gillberg and Fernell (2014) recog- than originally perceived’ (p. 6). The organisation
nised the potential of a more dimensional research of DSM-5 has been approved by the leaders of the
approach such as RDoC, they highlight the need RDoC framework, although from a research point
for diagnostic categories in clinical practice. of view the NIMH encourages research that crosses
However, Gillberg argued that the definition of rather than conforms to the DSM-5 diagnostic cat-
these clinically meaningful categories should be egories. While recognising the limitations of the
subject to review as our understanding of the categorical approach, the DSM-5 Task Force
conditions evolves. This is a view that is shared argued that due to the need for all revisions to be
by the APA, and in the introduction to DSM-5, evidence-based, scientifically, it was too early to
the task force recognised that ‘… research propose new definitions for the majority of disor-
advances will require careful, iterative changes if ders. Consequently, the current edition of DSM-5
DSM is to maintain its place as the touchstone should be viewed as a bridge, with on-going
classification of mental disorders’ (APA, 2013, research driving future revisions and updates.
p. 5). Thus, in DSM-5 the diagnostic criteria for
autism have shifted based on research evidence;
for example, in addition to the move from a triad Discussion
of impairments to a dyad, the co-occurrence of
ASD and ADHD has been recognised such that This chapter has provided a general overview of
the presence of ADHD is no longer an exclusion the implications of ICD and DSM on the screen-
criterion for ASD. The recognition of co-existing ing and assessment of autism by focusing on the
conditions such as ADHD, or even overlap in potential impacts of changes to these interna-
symptoms rather than the full-blown condition is tional classification systems. More specifically,
important to allow the development of appropri- the impact of the changes introduced in DSM-5
ate interventions. Gillberg suggested that the les- has been considered in the areas of diagnosis and
sons to be learned from the ESSENCE framework assessment, as well as research. In addition, there
may be the importance of ensuring that early has been discussion of whether categorical or
assessment services are able to assess the full dimensional approaches may be most appropriate
range of early symptoms associated with devel- or effective. So the question remains, what are
opmental disorder, in order to facilitate more the implications of ICD and DSM for the screen-
accurate diagnosis and the provision of more tar- ing, diagnosis, and monitoring of autism?
geted intervention. We have seen that changes to the international
So, could it be argued that the ESSENCE and classification systems may affect both their sensi-
RDoC frameworks represent an alternative, more tivity and specificity; that is, there is evidence
dimensional approach to DSM/ICD? Although in suggesting that there may be changes in who
comparison with DSM-IV-TR and ICD-10 the receives a diagnosis of ASD. However, the results
answer to this question would be yes, in DSM-5 from research studies have been mixed, and there
there appears to have been a clear shift in thinking. is some evidence to suggest that reported differ-
The introduction to DSM-5 describes growing rec- ences in sensitivity and specificity may be at least
ognition that the categorical system doesn’t ade- partially attributable to the way in which infor-
quately capture either clinical experience or mation is collected. More specifically, good lev-
research findings, as well as the understanding that els of both sensitivity and specificity may be
symptoms may be shared across diagnostic bound- dependent on the collection of sufficient informa-
aries, which may change across the life course. tion to fully capture the description of ASD in
Moreover, there is recognition that there may be DSM-5. This evidence, therefore, has implica-
shared environmental and genetic risk factors as tions for both assessment and screening, as the
well as potentially shared neural substrates across tools used in these processes should elicit infor-
neurodevelopmental disorders. As stated by the mation that informs clinicians about the specific
authors, ‘In short, we have come to recognise that behaviours included in the diagnostic criteria.
7 Implications of ICD and DSM on Screening, Diagnosis, and Monitoring 133

As discussed above, some of these tools were is determined relatively locally and not by the
developed based on the DSM-IV-TR criteria and DSM-5 or ICD-11 task forces. The implications
may not, therefore, elicit sufficient information in of DSM and ICD in this sense are, therefore, to
areas such as sensory sensitivity. Revisions to the some extent, dependent on how the guidelines are
criteria that affect who receives a diagnosis will viewed and implemented by the bodies who gov-
also clearly affect our ability to monitor the prev- ern the provision of services.
alence of autism over time, as well as monitoring The implications of DSM and ICD for our
the stability of each individual’s diagnostic ‘sta- understanding of autism is perhaps a simpler
tus’ over their lifetime. question. These guidelines are intended to be
These findings seem to indicate significant driven by our evolving understanding of the
implications of ICD and DSM for the screening, nature of the condition, and the various editions
diagnosis, and monitoring of autism. However, it of DSM and ICD, therefore, reflect the nature of
is important to remember two points. First, the autism as it was understood at discrete time
findings from studies have been mixed and fur- points. As such, it is to be hoped that these
ther research is essential to fully understand the descriptions do have implications on diagnosis
impact of the changes in DSM-5. Second, it is and assessment, as well as research, as each of
important to remember how the ICD and DSM these processes should be based on a good under-
systems were intended to be used. The APA standing of the condition. However, diagnosis,
(2013) highlighted that the descriptions offered assessment, and research should not be limited
in the international classification systems are not by DSM and ICD, as our understanding and
intended as comprehensive definitions and that knowledge of autism does not remain static
other factors that may have contributed to an between editions. As our understanding contin-
individual’s symptom profile should be consid- ues to evolve, the importance of clinical judge-
ered, including social, emotional, and biological ment in how to best apply the guidelines and
factors. Moreover, the ICD-10 diagnostic criteria meet the needs of individuals is paramount.
for research (WHO, 1993) are intended to be
used alongside the clinical descriptions and
guidelines (WHO, 1992), which better facilitate
the identification of more atypical presentations.
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Stress and Satisfaction
in the Diagnostic Process 8
Ebony L. Holliday, Hillary C. Stanley,
Jill C. Fodstad, and Noha F. Minshawi

process of diagnosing ASD can be a complex and


Satisfaction and Stress challenging experience for both professionals
in the Diagnostic Process and families. Professionals may feel over-
whelmed by time or resource constraints (Moh &
Autism spectrum disorder (ASD) is a neurode- Magiati, 2012), or by individuals exhibiting
velopmental disability characterized by impair- complex clinical presentations (Nissenbaum,
ment in social-communication skills and the Tollefson, & Reese, 2002). Most importantly,
presence of restricted or repetitive behaviors parents and the individuals being assessed may
(American Psychiatric Association, 2013). be confused by the assessment process, over-
According to the Centers for Disease Control and whelmed by the amount of information available
Prevention (CDC), ASD affects approximately 1 to them, or unsure of what their next steps should
out of 68 children in the USA (CDC, 2014). Even be. Therefore, it is crucial to explore the experi-
more, the global prevalence of ASD has increased ences and perspectives of families who are at the
nearly 20–30 times since the 1960s (CDC, 2014) center of the diagnostic process.
and is estimated at approximately 1 out of 160 The examination of patient satisfaction has
children (Elsabbagh et al., 2012). These rising been a focus of health care systems for several
rates of ASD combined with the importance of decades. This concept, which reflects the type
early intervention (Boyd, Odom, Humphreys, & and quality of services, as well as overall experi-
Sam, 2010; Lord & Richler, 2006) have led to a ence, is often considered a global indicator of
greater awareness for increased screening and health care quality and a significant factor in
surveillance (Johnson & Myers, 2007; Nadel & improving service delivery (e.g., Gonzalez et al.,
Poss, 2007; Oosterling et al., 2010). In those 2005; Turris, 2005). One particular area of focus
cases where formal assessment is pursued, the in assessing patient satisfaction in ASD is in the
diagnostic process specifically. In 1994, Smith
and colleagues launched a comprehensive evalu-
ation to assess whether the diagnostic process for
E.L. Holliday • H.C. Stanley • J.C. Fodstad ASD had improved during the previous decade
N.F. Minshawi (*) for families. Participants included 127 families of
Department of Psychiatry, Christian Sarkine Autism children aged 19 years and younger with ASD
Treatment Center, James Whitcomb Riley Hospital
diagnoses. Outcomes of their investigation
for Children, Indiana University School of Medicine,
Indianapolis, IN, USA yielded a lack of significant progress in diagno-
e-mail: nminshaw@iupui.edu sis, support, and early intervention among those

© Springer International Publishing Switzerland 2016 137


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_8
138 E.L. Holliday et al.

families surveyed (Smith, Chung, & Vostanis, McConkey, Truesdale-Kennedy, & Cassidy,
1994). Since that time, research has continued to 2009; Molteni & Maggiolini, 2014; Siklos &
investigate parental and individual/adult Kerns, 2007). Several studies have examined the
perspectives of the diagnostic process. Although types of early concerns identified by parents or
several consistencies have been identified in the caregivers. Results consistently indicate that the
literature, numerous discrepancies still exist. majority of parents first recognize delays or
Overall, the quality of the research in this area is abnormalities in language development (Howlin
still emerging. Rich information has been gained & Moore, 1997; McConkey et al., 2009; Moh &
from qualitative studies, which have identified Magiati, 2012) and/or social skills (Chamak
meaningful themes that aid in understanding the et al., 2011; Daley, 2004; Jones, Goddard, Hill,
parent and/or professional experience through Henry, & Crane, 2014; Molteni & Maggiolini,
the diagnostic process. However, due to method- 2014). Additional concerns include behavioral
ological limitations including inconsistency in disturbances (Chamak et al., 2011; Moh &
measurement and a lack of rigorous quantitative Magiati, 2012; Molteni & Maggiolini, 2014),
studies, the ability to generalize on a larger scale limited imaginative play (Moh & Magiati, 2012),
is limited. This is especially significant given the restricted/repetitive behaviors (Chamak et al.,
heterogeneity of ASD, and the likely impact 2011; Moh & Magiati, 2012), sleep or feeding
upon the diversity of parent perspectives. difficulties (Chamak et al., 2011; Molteni &
The focus of this chapter is to explore the Maggiolini, 2014), and general delays in motor
reactions and perspectives of parents, and in development (McConkey et al., 2009).
some cases the individuals themselves, regard- Previous research has highlighted slight dif-
ing the process of diagnosing ASD. First, the ferences in these early concerning symptoms
most common pathways to diagnosis will be pre- based upon ASD subtype/severity (Howlin &
sented and integrated with the factors that can Asgharian, 1999) and country of origin (Moh &
impact stress and satisfaction among families. Magiati, 2012). Within a sample of 770 families,
Within these common steps of the diagnostic Howlin and Asgharian (1999) investigated differ-
process, current research will be discussed in ences in the diagnostic experiences between par-
order to highlight strengths and areas that require ents who received diagnoses of Asperger’s
continued focus. Next, the chapter outlines best disorder versus autistic disorder. Regarding the
practices for working efficiently and effectively age of initial concern, parents of children with
with families during the assessment and diag- autistic disorder first identified warning signs at
nostic process. Finally, future directions for 18 months of age compared to 3 years of age for
research are also discussed. parents of children with Asperger’s disorder.
These findings, also confirmed in later studies
(e.g., Wiggins, Baio, & Rice, 2006), suggested
Diagnostic Pathway that individuals with higher functioning ASD ini-
tially may exhibit more subtle symptoms that are
Development of Parental Concerns not identified until later years.
For many individuals and families, the jour-
Developmental milestones are important indica- ney to receiving an appropriate diagnosis can be
tors for parents that their child is progressing as lengthy and challenging. The average period of
expected. When parents begin to notice that their time between age of initial concerns and diagno-
child is not engaging in typical behaviors sis has varied among studies. Most researchers
expected for his or her age, worry or anxiety have cited a length of time between 1 and 4 years
may develop. Among children with ASD, for the diagnostic process, with the typical age
most parents’ concerns regarding development of diagnosis ranging from 3 to 6 years among
occur between 18 and 24 months of age (Chamak, children (CDC, 2014; Daley, 2004; Daniels &
Bonniau, Oudaya, & Ehrenberg, 2011; Mandell, 2014; Goin-Kochel, Mackintosh, &
8 Stress and Satisfaction in the Diagnostic Process 139

Myers, 2006; Howlin & Moore, 1997; Mansell Parent reactions to this initial contact with
& Morris, 2004; McMorris, Cox, Hudson, Liu, & professionals can vary. Some parents cite confi-
Bebko, 2013; Moh & Magiati, 2012; Siklos & dence in the consulted professional’s assessment
Kerns, 2007; Wiggins et al., 2006). It is noted abilities and feel respected and valued during
that results have varied and some investigators evaluation appointments (Hackett, Shaikh, &
found children diagnosed at younger ages and in Theodosiou, 2009). Other families may be told
a more expedited process (e.g., Harrington, by professionals that there are no significant
Patrick, Edwards, & Brand, 2006). This is issues of concern. In these situations, feelings of
encouraging given that rates of satisfaction have stress and frustration can develop, especially for
been found to be higher among parents whose parents who believe that there are clear abnor-
children were diagnosed at younger ages (Goin- malities occurring in their child’s behavior or
Kochel et al., 2006; Siklos & Kerns, 2007). development. In fact, some parents believe that
However, even a wait of only a few months can their initial concerns were not taken seriously by
still be considered a prolonged period of uncer- professionals, or that they were unable to accu-
tainty and stress in the lives of families. rately describe their worries to their PCP or gen-
eral practitioner (Braiden, Bothwell, & Duffy,
2010). Perhaps unintended, professionals’
Encounters with Professionals responses to parental concerns sometimes can be
perceived as curt and dismissive (Bailey, 2008;
It is not uncommon for a lag time to exist between Carbone, Behl, Azor, & Murphy, 2010). This is
the period that initial concerns are identified and particularly worthy of focus given that many of
the point at which families pursue further assess- parents in the cited studies (e.g., Braiden et al.,
ment. Prior studies have indicated that parents 2010; Carbone et al., 2010) had children who
wait between 7 and 8 months prior to scheduling eventually received ASD diagnoses. Certainly,
an initial appointment with a professional (Daley, this is not to imply that all children with delays in
2004; Howlin & Moore, 1997). It is possible that their language or social skills eventually receive
these delays occur due to familial beliefs that the diagnoses of ASD. However, of those children
symptoms will subside over time. Alternately, with ASD diagnoses, a portion of parents indi-
families or individuals may be uncertain if their cated that their initial concerns were not validated
concerns are valid. During this pre-diagnostic by professionals (Braiden et al., 2010; Carbone
period, worry and anxiety may continue to et al., 2010).
develop in the family as decisions are eventually The extent to which professionals are attentive
made to pursue further evaluation. and proactive with early warning signs is varied,
and the issue is complex. Some health and mental
Initial Visit. There are a variety of professionals health professionals may be insufficiently trained
who serve as the initial point of contact for fami- in ASD to accurately identify subtle symptoms or
lies to discuss their concerns. These individuals various presentations of behaviors. In some
include pediatricians, psychiatrists, psycholo- cases, parents lack confidence in their PCP’s
gists, educators, and other medical or mental skills to identify ASD (Carbone et al., 2010;
health providers. However, the first consultation Harrington et al., 2006). Many times, families
is often the primary care provider (PCP) or gen- simply wait until additional or more significant
eral practitioner/pediatrician (Johnson & Myers, concerns develop in their child. In a subsequent
2007). A variety of outcomes can result from this investigation by Carbone and colleagues (2013),
initial consultation. Families may either receive a 144 parents of children with ASD completed a
formal ASD diagnosis, a diagnosis of a different questionnaire assessing perceptions of their
condition (e.g., language delay, intellectual dis- PCP’s abilities to address specific needs and con-
ability, behavioral problems), referral for addi- ditions related to their children’s diagnoses.
tional assessment, or assurance that there is no Additionally, 144 PCPs (unmatched to family
cause for concern. participants) completed a similar questionnaire
140 E.L. Holliday et al.

regarding self-perceptions of their own abilities before receiving a final ASD diagnosis (Goin-
in the same areas. Participating PCPs rated their Kochel et al., 2006; Moh & Magiati, 2012).
abilities in addressing early behavioral or devel- A factor that contributes greatly to this high
opmental concerns more favorably (i.e., 78 % number of referrals is that access to quality ser-
rated as “good”) than parents (i.e., 62 % rated as vices (i.e., ASD-specific diagnostic centers, spe-
“good”). Additionally, Carbone and colleagues cialized professionals) is sometimes limited due
identified that one of the most discrepant areas to the high demand for these services and small
between parents and PCPs was in the ability to number of specialists (Zwaigenbaum & Stone,
make appropriate referrals during the diagnostic 2006). However, these referrals and multiple
process. Approximately 80 % of PCPs perceived appointments can take a toll on a family. Goin
that they had “good” abilities to make appropri- and colleagues (2006) found a significant inverse
ate referrals, compared to only 50 % of parents relationship between the number of professional
(Carbone et al., 2013). These discrepancies sug- encounters and overall satisfaction. Specifically,
gest that there may be a gap between profession- increased satisfaction was associated with fewer
als and families related to needs and expectations visits to professionals and decreased satisfaction
during the initial contact and subsequent ren- associated with more professional visits. Levels
dered services. of satisfaction and stress among families also can
Researchers have also evaluated PCPs’ self- be influenced by the quality of the relationship
ratings of perceived difficulty in identifying early with professionals. Among families who consult
warning signs and symptoms of ASD within a high number of professionals, those who iden-
minority children (Zuckerman et al., 2013). tify a highly collaborative relationship experi-
Among 500 PCPs, approximately 60 % reported enced less stress and more satisfaction compared
difficulty in identifying ASD symptoms and to those families with lower rated levels of col-
warning signs in Spanish-speaking Latino fami- laboration (Moh & Magiati, 2012).
lies. Approximately 37 % of PCPs reported the
same difficulty for African-American children.
These ratings were found to be significantly dif- Variables Impacting Diagnosis
ferent from those of Caucasian children
(Zuckerman et al., 2013). Overall, these out- The length of the diagnostic process may be
comes reflect the ways in which cultural and lan- influenced by several variables including level
guage variables can impact the assessment of of severity, race/ethnicity, and socioeconomic
ASD and perhaps the screening and diagnostic status. These variables can introduce complex-
experiences of those families. ity to the evaluation process, which potentially
may lead to delays in final diagnoses. Taking
Subsequent Referrals. When parents and pro- into consideration the association between age
fessionals are in agreement about initial con- of diagnosis and parental satisfaction (Goin-
cerns, research has demonstrated that 50–55 % of Kochel et al., 2006; Siklos & Kerns, 2006), it is
families are then referred to subsequent providers important to understand how these additional
(Howlin & Moore, 1997; Jones et al., 2014; Moh variables impact parental experiences of the
& Magiati, 2012). During this next stage of the diagnostic process.
diagnostic process, psychiatrists, psychologists, In a critical review of 42 studies published
and multidisciplinary teams are common provid- between 1990 and 2012, Daniels and Mandell
ers of additional specialized assessment. Even (2014) analyzed discrepancies between age of
after referrals to these specialists, it is not unusual diagnosis and other related variables. Within
for some families to be further referred to other ASD subtypes/severity, children with Asperger’s
professionals for additional evaluation. Although disorder were consistently diagnosed at later
identified estimates have varied, families typi- ages than children with PDD-NOS or autistic
cally visit an average of four to five professionals disorder. Additionally, PDD-NOS diagnoses
8 Stress and Satisfaction in the Diagnostic Process 141

were generally identified later than diagnoses for during the diagnostic process. Certainly, research
autistic disorder. Many of these studies sug- would need to further investigate these issues
gested that those children with more severe ASD more directly.
symptoms received earlier diagnoses (Daniels & As noted prior, diagnostic instability can be
Mandell, 2014). even more common among specific demographic
Symptom severity was also found to impact groups. Researchers have found increased delays
the number of encounters with professionals. For in ASD diagnosis with families of lower socio-
example, Moh and Magiati (2012) found a nega- economic status, members of certain racial/eth-
tive correlation between the degree of ASD nic groups, and those living in underserved/rural
severity and the number of professional consulta- areas (Daniels & Mandell, 2014). Among young
tions, such that individuals with more severe children (less than 6 years of age), decreased
symptomology visited fewer professionals in ASD prevalence rates have been found in chil-
order to obtain a diagnosis. This finding is likely dren with low socioeconomic status (Liptak
due to a clearer presentation of diagnostic crite- et al., 2008). Researchers have also found lower
ria. There are also specific deficits or clinical pre- prevalence of ASD among Latino children com-
sentations associated with parental stress and pared to other races/ethnicities (Liptak et al.,
satisfaction. Siklos and Kerns (2007) found that 2008; Mandell et al., 2009). Although the overall
families of children with more impaired commu- research on racial/ethnic and economic dispari-
nication reported lower levels of stress and higher ties is inconsistent, it is possible that the cited dif-
rates of satisfaction during the diagnostic pro- ferences reflect a greater trend in missed early
cess. Conversely, parents of children with greater diagnosis in these populations (Palmer, Walker,
behavioral difficulties report less satisfaction Mandell, Bayles, & Miller, 2010). When
with their diagnostic experiences. Their research acknowledging the identified correlation between
suggested that communication deficits may be diagnostic age and parental stress and/or satisfac-
identified more efficiently by professionals, lead- tion (Goin-Kochel et al., 2006; Howlin & Moore,
ing to quicker referrals, evaluation, and access to 1997; Siklos & Kerns, 2007), implications may
services (Siklos & Kerns, 2007). also exist for the impact of culture and/or socio-
Furthermore, ethnic/racial disparities have economic level on outcome variables.
been identified related to diagnostic instability, Past researchers (Brogan & Knussen, 2003;
which is the likelihood of individuals receiving Howlin & Moore, 1997) also found that higher
other psychological or medical diagnoses prior to parental satisfaction was associated with receiv-
their final ASD diagnosis (McMorris et al., ing a definitive rather than tentative diagnosis.
2013). For instance, African-American children Several researchers have made note of partici-
were found to be three times more likely than pants with diagnoses of “autistic traits, tenden-
Caucasian children to receive an alternate diag- cies, or features” (e.g., Brogan & Knussen, 2003;
nosis before their ASD diagnosis (Mandell, Howlin & Moore, 1997; Siklos & Kerns, 2007;
Ittenbach, Levy, & Pinto-Martin, 2007) and were Smith et al., 1994). These descriptors were often
diagnosed at overall older ages (Mandell et al., defined as tentative diagnoses in the above stud-
2009). These identified variables (i.e., ASD sub- ies and identified those individuals who did not
type/severity, ethnicity) are important to consider meet full diagnostic criteria for autistic disorder
due to the potential impact upon diagnostic age or Asperger’s disorder. When professionals pro-
and overall parental stress and satisfaction. If vide a tentative diagnosis, it may be due to their
individuals with a specific functioning level or caution or hesitancy in assigning a false-positive
impairment and/or those of identified cultural outcome (Zwaigenbaum & Stone, 2006) or later
backgrounds are prone to receiving diagnoses at misdiagnosis (Nissenbaum et al., 2002). However,
later ages, it is possible that these factors may it is important for professionals to be aware that
impact the stress/satisfaction of family members tentative diagnoses have been associated with
142 E.L. Holliday et al.

lower rates of satisfaction from parents and fami- the way in which the diagnosis was communi-
lies (Brogan & Knussen, 2003; Howlin & Moore, cated. Scores ranged from 1 (not satisfied at all)
1997). to 5 (very satisfied). The mean score for the style
Overall, parental satisfaction with the evalua- in which diagnosis was shared was 3.42
tion process can correlate with a child’s diagnos- (SD = 0.93). These parents were also moderately
tic age. Fortunately, the outcomes from a satisfied with their relationships with profession-
literature review on age of ASD diagnosis by als (i.e., M = 3.34, SD = 0.96). In fact, parents
Daniels and Mandell (2014) yielded a consistent were most satisfied with the overall diagnostic
trend for younger groups of children to be diag- experience when they believed that they were
nosed at earlier ages compared to the ages at provided with helpful information by profession-
which older groups of children were diagnosed. als and when they experienced valuable collabo-
This may reflect a recent trend toward increased ration (e.g., sharing of information, incorporation
screening and surveillance for ASD among of parents in decision making, genuine validation
younger children leading to further evaluation of concerns) (Moh & Magiati, 2012). A particu-
(Brian et al., 2008; Johnson & Myers, 2007; lar aspect of collaboration, specifically the
Nadel & Poss, 2007). Timely diagnosis can allow acknowledgement of initial parental concerns,
children access to earlier intervention services has also been associated with increased rates of
(Boyd et al., 2010; Lord & Richler, 2006) which satisfaction during the delivery of diagnosis
may positively impact upon their long-term prog- (Brogan & Knussen, 2003). Additionally,
nosis (Klintwall, Eldevik, & Eikeseth, 2015; Punshon, Skirrow, and Murphy (2009) empha-
Osborne, McHugh, Saunders, & Reed, 2008) and sized that receiving an ASD diagnosis should be
also serve to decrease rates of parental stress viewed as a process over time rather than an iso-
(Wong & Kwan, 2010). lated experience. Although this research focused
solely on adults diagnosed with Asperger’s disor-
Disclosure of Diagnosis. The delivery of a diag- der, there may be shared pathways in the experi-
nosis has the potential to be one of the most ences of parents/families adjusting to an overall
stress-producing periods in the diagnostic pro- ASD diagnosis.
cess for both families (Abbott, Bernard, & Forge, Researchers have also examined the per-
2013) and professionals (Nissenbaum et al., spectives of parents related to the positive and
2002). At this delicate juncture, many parents or negative factors associated with the delivery of
family members have personally identified sig- diagnosis. Results have identified overall
nificant concerns in their child’s behaviors, met strengths as parental belief in the expertise of
with numerous professionals, and may have the professional (Molteni & Maggiolini, 2014),
endured long waiting periods. Given all of these and the overall relief, increased knowledge, and
factors, families often present to the feedback/ acceptance of the diagnosis (Mansell & Morris,
disclosure appointment with heightened anxiety 2004; Osborne & Reed, 2008). Undesirable
and worry and a variety of contradictory emo- factors include the professional’s inability to
tions about potential diagnostic outcomes provide a prognosis when delivering diagnosis
(Molteni & Maggiolini, 2014). Research is some- (Molteni & Maggiolini, 2014), incomplete or
what discrepant regarding parent/family satisfac- tentative diagnoses (Brogan & Knussen, 2003),
tion with the actual delivery of diagnosis. In an and confusing conversation or discussion
examination of 102 parents of children with (Mansell & Morris, 2004; Molteni &
ASD, Moh and Magiati (2012) found that the Maggiolini, 2014).
majority of participants reported satisfaction with
the manner in which diagnostic information was Post-diagnosis. The period immediately follow-
shared with them. Overall satisfaction in this ing the disclosure of a diagnosis is also consid-
study was determined by parental ratings of six ered emotionally intense for many individuals
components of the diagnostic process, including and families. For some parents, the shock or
8 Stress and Satisfaction in the Diagnostic Process 143

stress of receiving a formal ASD diagnosis can been associated with levels of stress and
interfere with their ability to effectively hear and satisfaction of families and individuals during
understand post-diagnostic feedback from pro- the diagnostic period. The identification and
fessionals (Abbott et al., 2013). Many of the par- assessment of these variables are essential in
ticipants in Abbott and colleagues’ investigation order to increase the knowledge and awareness
reported feeling overwhelmed by the amount of of professionals who are engaged in service
information provided at the disclosure or feed- delivery. With greater understanding of family
back session. Outcomes from other studies (Jones and patient experiences during the diagnostic
et al., 2014; Osborne & Reed, 2008; Siklos & process, professionals can strive to implement
Kerns, 2007) indicated that individuals and fam- best practice strategies aimed at improving sat-
ily members identified dissatisfaction due to a isfaction and overall experiences.
lack of post-diagnostic support or because infor-
mation was not described as efficiently or effec-
tively as possible. Considering these findings, it Improving the Diagnostic Process
appears crucial to enact a careful balance in the
type and quantity of information provided at this As indicated earlier, it may take several years for
sensitive stage of the diagnosis process. a child to obtain an ASD diagnosis. The child
Although the majority of researchers have may be placed on waiting lists (Connolly &
assessed the experiences of parents during the Gersch, 2013) or referred to multiple providers
diagnostic experience, it is also important to con- before he/she receives a diagnosis (Goin-Kochel
sider the experiences of the individuals them- et al., 2006). Waiting for a diagnosis is anxiety
selves. Jones and colleagues (2014) evaluated the provoking for parents (Osborne & Reed, 2008).
perceptions of 134 adults with ASD diagnoses. As providers, there are a number of things that
Participants were high functioning and able to we can do to help attenuate the stress that parents
report on their diagnostic process, occurring experience during the evaluation process and
either in childhood or adulthood. Five predictors thereby hopefully increase their satisfaction with
of overall satisfaction (i.e., time/delay in diagno- services.
sis, numbers of professional encounters, manner
of professional providing diagnosis, quality of
information provided at diagnosis, and support Preparing Families for the Process
offered post-diagnosis) were identified.
Participants completed a detailed questionnaire Although parents would like the diagnostic pro-
assessing these variables. Results indicated that cess to take less time, this is not always possible
the most significant predictor of overall satisfac- for clinics. To reduce parental distress during this
tion was the quality of information provided at time period, parents find it helpful if profession-
diagnosis, followed by the time/delay in diagno- als inform them about the length of the diagnostic
sis (Jones et al., 2014). Other researchers process beforehand (Abbott et al., 2013; Connolly
(Punshon et al., 2009) have also identified delays & Gersch, 2013). If the child is completing a
in diagnosis among high-functioning adults with multidisciplinary assessment, parents prefer
ASD. Collectively, these findings are generally being informed that several different profession-
consistent with experiences of stress and satisfac- als will be completing the exam. This informa-
tion of parents during the diagnostic process tion helps parents understand why the diagnostic
(e.g., Brogan & Knussen, 2003; Goin-Kochel process takes a significant amount of time and
et al., 2006; Howlin & Moore, 1997; McMorris also helps relieve parental frustration (Abbott
et al., 2013; Siklos & Kerns, 2007). et al., 2013).
In sum, several variables (i.e., number of While waiting for an ASD diagnosis, parents
professional encounters, diagnostic age/wait may experience fear and anxiety because they
time, quality of professional relationship) have have either inaccurate or no information about
144 E.L. Holliday et al.

ASD. Parents can find an overwhelming amount sional and family will not be disturbed (Baird,
of information on the Internet. Additionally, they McConachie, & Scrutton, 2000). Since receiving
may only obtain information about the most diagnostic feedback can be a stressful experience
severe cases (Connolly & Gersch, 2013). To for parents, it should be delivered in a family-
reduce parental fear and anxiety, professionals friendly setting. It is recommended that profes-
should provide parents with information about sionals have comfortable chairs or tables in their
ASD while they are waiting for their diagnostic office (Nissenbaum et al., 2002) and the room be
assessment. Professionals could provide parents arranged in a manner that is conducive to conver-
with pamphlets and/or handouts on ASD, along sation (Shea, 1993). Since parents can have nega-
with a list of reputable websites and books. This tive emotional reactions to the diagnosis, it is
information could be provided to the family via a beneficial to have tissues available (Shea, 1993).
letter in the mail or be posted on the agency’s While potentially sounding minor to providers, a
website. When professionals provide this infor- warm and comfortable environment for deliver-
mation to the family, they should clearly state ing feedback may reduce some of the external
that they do not know if the child meets criteria stress experienced by the parents and therefore
for ASD. Professionals should state that they are allow them to more effectively listen to the infor-
providing this information because many parents mation being provided.
report that receiving accurate information on Beyond location and duration, another factor
ASD helps alleviate parental anxiety during the to consider is the people present in a feedback
diagnostic process. These statements could be session. During an ASD evaluation, families may
provided in a letter to the family and/or verbally be assessed by several professionals on a multi-
when the family schedules the ASD evaluation. disciplinary team or one professional (Mulligan
et al., 2012). When a multidisciplinary team
completes the evaluation, the team should meet
The Feedback Session prior to the feedback session in order to discuss
the data and results. Together, the team should
Since parents often wait a significant amount of decide who from the team will be present for the
time to obtain a diagnostic evaluation, feedback feedback session and how information, results of
should be delivered to parents as soon as possi- the assessment, and the diagnosis will be dissem-
ble (Hasnat & Graves, 2000). Unfortunately, inated (i.e., who will speak, lead the session, and
researchers have not indicated how quickly deliver the diagnosis). Frequently, it is the psy-
feedback should be delivered to families. As chologist on the team who delivers the diagnosis
providers, it is important to keep in mind the (Nissenbaum et al., 2002). Additionally, the team
gravity of the information being provided from should designate one main professional for the
the family’s perspective. With this in mind, pro- family to contact with questions (Cottrell &
fessionals should work to ensure that the deliv- Summers, 1990). Whether a single professional
ery of a diagnosis is given ample consideration or multidisciplinary team completes the evalua-
in terms of the setting and structure of the feed- tion, the professional who delivers feedback
back session, as well as the information pro- should have a prior relationship with the family.
vided in the written report. Parents prefer receiving feedback from someone
When planning feedback sessions, consider- who has interacted with their child and has first-
ation should be given to the time and setting. hand knowledge of his/her skills and behavior
Professionals should allocate a sufficient amount (Shea, 1993).
of time to the feedback session (Mulligan, In addition to ensuring that the appropriate
MacCulloch, Good, & Nicholas, 2012). Research professionals are present for feedback, parents
suggests allocating between 75 and 90 min to the have indicated that they do not like being
feedback session (Pruett, 2013). Feedback should informed of a diagnosis when they are alone and
be provided in a private setting, where the profes- do not have any support. If the child comes from
8 Stress and Satisfaction in the Diagnostic Process 145

a two-parent home, then professionals should of his/her diagnosis. Professionals could also use
inform parents of the diagnosis when they are visuals and/or social stories to assist the child in
together (Baird et al., 2000; Poehlmann, understanding his/her symptoms. Additionally,
Clements, Abbeduto, & Farsad, 2005). If the professionals should use simple language that the
child comes from a one-parent household, then child will understand.
professionals should ask the parent if they It is recommended that parents have the
would like to bring another individual to the opportunity to ask questions throughout the feed-
feedback session for support (Baird et al., 2000). back session (Abbott et al., 2013; Mulligan et al.,
If other family members (e.g., grandparents, 2012). When parents ask questions, professionals
aunts, uncles) also live in the home or are sig- should do their best to answer all of them.
nificantly involved in the child’s life (e.g., pro- Subsequently, professionals should be knowl-
vide childcare), then it may also be beneficial to edgeable about symptoms of ASD and effica-
invite them. Consideration must be given to par- cious treatments prior to the feedback session
ents who are divorced or separated. It is best (Nissenbaum et al., 2002). If the professional
practice to have all interested parties in the does not know the answer to the parents’
room, which includes all parents and steppar- question(s), he/she should inform the parents that
ents. However, if parents do not live near each he/she is “not sure” or “does not know.”
other or have a hostile relationship, then it may Professionals should acknowledge their limita-
be best to have two separate feedback sessions tions rather than avoid the question or give an
(Tharinger et al., 2008). incorrect response (Shea, 1993).
Research is inconsistent about whether chil-
dren should be present in the room during feed-
back. Cottrell and Summers (1990) indicate that Structuring the Feedback Session
parents prefer being informed of a diagnosis with
the child present. Nissenbaum et al. (2002) inter- In addition to thinking about all of the various
viewed parents and asked them if their child was factors outlined above that influence the nature of
present during feedback. The majority of parents a feedback session, clinicians should also give
indicated that their child was not in the room dur- prior consideration to the way that information is
ing feedback. Parents who preferred having their being delivered. Feedback sessions should be a
child out of the room indicated that their child structured session that is outlined and planned
would not have understood the information and/ beforehand (Abbott et al., 2013). At the begin-
or that they needed time to grieve the diagnosis ning of the feedback session, it is beneficial for
without their child present. Tharinger et al. professionals to check in with the parents and
(2008) suggest having a second feedback session assess their feelings about the assessment process
with the child and his/her parents after the profes- (Tharinger et al., 2008). Next, professionals
sional has completed a separate feedback with should review the purpose of the evaluation
the parents. It is recommended that this session (Groth-Marnat, 2003) and provide an outline for
occur days or weeks after the initial parent feed- the session (Tharinger et al., 2008). At this point,
back session to allow parents time to process it is important that professionals emphasize the
their initial emotional reactions to the diagnosis. importance of collaboration during feedback.
When delivering feedback to children, informa- Parents must be encouraged to offer their opin-
tion should be provided in a developmentally ions, thoughts, and disagreements. Moreover,
appropriate manner. Children with ASD often professionals should encourage parents to ask
have poor insight into their psychological self questions throughout the feedback session. In
(Williams, 2010). Therefore, they may be unable addition, it is recommended that professionals
to recognize their symptoms. It may be beneficial thank parents for their participation and validate
for professionals to give concrete examples of their feelings about the evaluation process. It is
the child’s symptoms when informing the child also beneficial if professionals acknowledge the
146 E.L. Holliday et al.

time and energy that parents dedicated to the Cohen, 2012). To assist with comprehension,
evaluation (Tharinger et al., 2008). professionals should repeat information, have
When professionals inform parents of their visual aids, and use examples when explaining
child’s diagnosis, it is beneficial if he/she reviews concepts. Professionals should be aware of
the diagnostic criteria of ASD (Osborne & Reed, parental verbal and nonverbal cues that indicate if
2008) and states which symptoms the child they understand the information being presented.
exhibits (Nissenbaum et al., 2002). After the Research suggests that parents who do not spon-
diagnosis is rendered, professionals should pro- taneously ask questions, appear unwilling to
vide information regarding the child’s prognosis engage in the discussion, and provide minimal
(Mansell & Morris, 2004; Mulligan et al., 2012; verbal (e.g., yes, no, okay, uh huh) and nonverbal
Nissenbaum et al., 2002) and recommendations responses (e.g., head nod) likely do not under-
(Tharinger et al., 2008). With regard to the child’s stand the information or may be confused
prognosis, professionals should educate parents (Watermeyer et al., 2012).
on the child’s future development and the impact Professionals should focus on the child’s
of early intervention (Nissenbaum et al., 2002). strengths and provide hope for the family during
When reviewing recommendations, it is benefi- feedback (Abbott et al., 2013; Mulligan et al.,
cial if professionals adequately explain treatment 2012; Nissenbaum et al., 2002). Parents report
options (Mansell & Morris, 2004) and provide being more satisfied with feedback when pro-
information regarding local resources (Mulligan fessionals discuss positive attributes of their
et al., 2012). All recommendations should be child (Abbott et al., 2013). When professionals
specific and individualized to the child. focus on the child’s strengths, it provides hope
Overall, feedback should be provided in a for the parents (Mulligan et al., 2012), which in
manner that is honest (Mulligan et al., 2012; turn provides motivation for parents to handle
Nissenbaum et al., 2002), clear (Abrams & the child’s behavior and other challenging
Goodman, 1998; Baird et al., 2000; Mulligan symptoms of ASD. It is recommended that pro-
et al., 2012), and easy to understand (Mulligan fessionals discuss the child’s strengths at the
et al., 2012; Nissenbaum et al., 2002; Shea, end of the feedback session so it ends on a “pos-
1993). Professionals should be honest regarding itive note” (Nissenbaum et al., 2002). Research
the child’s strengths, needs, weaknesses, and suggests that parents enjoy hearing optimistic
future prognosis (Shea, 1993). At times, profes- statements about their child’s future (Abbott
sionals avoid using labels during feedback ses- et al., 2013; Nissenbaum et al., 2002).
sions (Abrams & Goodman, 1998; Chamak et al., Specifically, parents want to hear that there is
2011). They may inform parents that the child hope for improvement and that there are effec-
has communication problems, a developmental tive interventions that could improve the child’s
delay, or language problems (Chamak et al., deficits (Cottrell & Summers, 1990; Mulligan
2011). Instead of avoiding diagnostic labels, et al., 2012). Although professionals should
which can lead to confusion on the part of the offer hope and focus on the strengths of the
parents, professionals should clearly state that the child, it is important that he/she provides accu-
child meets criteria for ASD (Abrams & rate and honest information (Shea, 1993). In
Goodman, 1998). other words, professionals should not provide
Additionally, many parents report that infor- false hope to the family.
mation provided during feedback was not clear Professionals should be supportive, warm, and
(Keenan, Dillenburger, Doherty, Byrne, & empathetic during feedback (Baird et al., 2000).
Gallagher, 2010). Therefore, information should Failure to do so may negatively impact parents’
be conveyed in simple language that is easily abilities to cope with their child’s diagnosis. In
understandable (Abbott et al., 2013; Nissenbaum fact, parents who perceive their medical profes-
et al., 2002; Shea, 1993; Watermeyer, Kanji, & sional as being insensitive and lacking empathy
8 Stress and Satisfaction in the Diagnostic Process 147

indicate that these characteristics negatively structure the feedback session, deliver feedback,
impacted their emotional response to their child’s and provide written information. While it can
diagnosis (Poehlmann et al., 2005). Research be quite time consuming to do so, research has
suggests that having a supportive relationship demonstrated that parents’ reaction to receiving
with professionals assists parents in accepting an ASD diagnosis is impacted by the quality of
their child’s diagnosis (Abbott et al., 2013). the assessment and feedback they receive. A
summary of the feedback session is provided in
Table 8.1.
Written Feedback

Due to the large amount of information provided Table 8.1 Strategies for effective feedback sessions
and the emotional nature of feedback sessions, The feedback session
parents may have difficulty retaining and under- Preparing for the feedback session
standing the information presented (Abbott et al., • Have comfortable chairs and tables
2013; Mulligan et al., 2012). Thus, written infor- • Have tissues available
mation should be provided to families at the feed- • Arrange chairs in a manner that is conducive to
back session so they can revisit information conversation
discussed (Braiden et al., 2010; Brogan & • Schedule the feedback session for 60–75 min
Knussen, 2003; Mulligan et al., 2012). • Ask the parent(s) if he/she would like to bring
another adult to the interview (i.e., spouse, partner,
Specifically, the family should be provided with a family member(s), and/or family friend)
written report regarding the diagnostic process • Have the parent(s) decide if he/she would like the
(Shea, 1993). It is suggested that professionals child present during the feedback session
inform parents at the beginning of the feedback Structuring the feedback session
session that they will be receiving a report in • Check-in with the parents and evaluate their
order to relieve their anxiety of having to remem- feelings about the assessment process
ber all of the information presented (Tharinger • Review the purpose of the evaluation
et al., 2008). • Invite parents to share their thoughts and opinions
In addition to a written psychological report, • Encourage parents to ask questions at any point
parents find it beneficial if they receive pam- • Review the diagnostic criteria of ASD and state
which symptoms the child demonstrates
phlets, booklets, and/or websites on ASD
• Clearly state that the child meets criteria for ASD
(Mulligan et al., 2012; Osborne & Reed, 2008), • Discuss the child’s strengths
along with a reading list (Braiden et al., 2010; • Provide information regarding the child’s prognosis
Mansell & Morris, 2004; Mulligan et al., 2012). (i.e., child’s future development and the impact of
Written information about local resources and early intervention)
treatment should also be provided to parents • Provide recommendations
(Mansell & Morris, 2004; Nissenbaum et al., • Allow additional time at the end of the session for
questions
2002). It is helpful if professionals include the
How to deliver feedback
phone number and name of the contact person in
• Use language that the parents will understand
this information (Baird et al., 2000; Nissenbaum
• Be honest, supportive, warm, and empathetic
et al., 2002). All written materials provided to
• Provide hope for the family
parents should be written using simple lan- Written information provided at feedback
guage; parents must be able to understand the • Written psychological report
information (Braiden et al., 2010; Nissenbaum • Pamphlets, booklets, and/or handouts on ASD
et al., 2002). • List of books and websites on ASD
In summary, a variety of factors must be • The name, telephone number, and/or website for
considered when providing feedback to par- local resources
ents. Professionals should be knowledgeable • The name and telephone number for local treatment
about how to prepare for the feedback session, providers
148 E.L. Holliday et al.

Parent Experiences Following time for parents to express these concerns and
a Diagnosis provide information to reduce these concerns
and correct misbeliefs, especially pertaining to
Following the diagnosis, parents may experience the causes of ASD.
either positive or negative emotional reactions.
Research indicates that parents experience the
following negative reactions to receiving an ASD Accepting the Child’s Diagnosis
diagnosis: shock, anger, hopelessness, denial,
grief, sadness, frustration, anxiety, and confusion Accepting their child’s diagnoses may be harder
(Cameron, Snowdon, & Orr, 1992; Goff et al., and take more time for some parents than others
2013; Graungaard & Skov, 2007; Hasnat & (Cameron et al., 1992; Mitchell & Holdt, 2014).
Graves, 2000; Mansell & Morris, 2004; Mitchell However, the majority of parents report reaching
& Holdt, 2014; Poehlmann et al., 2005). this stage at some point of time (Mitchell &
Following a diagnosis of ASD, parents may Holdt, 2014; Poslawsky, Naber, Van Daalen, &
experience grief that their child will never be Van Engeland, 2014). Parents may initially be in
“normal” (Cameron et al., 1992; Poehlmann denial of their child’s diagnosis, limiting their
et al., 2005). They may experience a sense of ability to accept the diagnosis (Mitchell & Holdt,
loss, as they have to alter their image of the child 2014; Nissenbaum et al., 2002). Parents must
(Goff et al., 2013). Additionally, parents may process their negative emotional reactions before
worry about their child’s future (Mansell & they are able to accept their child’s diagnosis
Morris, 2004). Specifically, parents worry about (Mitchell & Holdt, 2014). Some parents indicate
the amount of care and support their child may that in order to accept their child’s diagnosis, they
need during their life and how to provide this had to alter how they viewed their child. Instead
(Mitchell & Holdt, 2014). of focusing on how the child “should be,” they
Though some parents may react negatively to began thinking about how “the child is” (Avdi
their child’s diagnosis, the majority of parents et al., 2000).
report experiencing a sense of relief (Mansell & Poslawsky et al. (2014) examined parental
Morris, 2004; Osborne & Reed, 2008). They feel acceptance of their child’s ASD diagnosis.
relieved because their concerns regarding their Parents were defined as adequately adapting and
child’s development and/or behavior were vali- coping with the diagnosis if they were action,
dated (Avdi, Griffin, & Brough, 2000; Mulligan thinking, or feeling oriented. Parents who were
et al., 2012; Watson, 2008). Parents also report action oriented took steps to obtain resources for
experiencing a sense of relief because a diagnosis their child and adjust their child’s routine to
allows them to obtain services for their child account for the diagnosis. Thinking-oriented par-
(Osborne & Reed, 2008). ents obtained information about their child’s
Prior to a diagnosis of ASD, parents may diagnosis in order to assist their understanding of
blame themselves and question if their parenting ASD. Feeling-oriented parents experienced both
caused the child’s delay or behavior (Mulligan positive and negative emotions about their child’s
et al., 2012; Watson, 2008). Mothers may ques- diagnosis. Poslawsky and colleagues found that
tion if they did something wrong during their most parents who accepted their child’s diagnosis
pregnancy or immediately after their child’s were action oriented. The study indicated that
birth. For instance, mothers have reported that parents who were unable to accept their child’s
they worried that their illnesses or infections dur- diagnosis, were angry, emotionally overwhelmed,
ing pregnancy caused their child’s behavioral depressed, or neutral to their child’s diagnosis.
problems (Watson, 2008). A diagnosis helps alle- The outcomes of Poslawsky and colleagues
viate parental guilt and personal blame (Mansell investigation indicated that it was harder for par-
& Morris, 2004; Midence & O’Neill, 1999; ents to accept their child’s diagnosis if he/she had
Watson, 2008). It is vital that professionals allow more severe symptoms of ASD.
8 Stress and Satisfaction in the Diagnostic Process 149

Support and Resources cents (Hall & Graff, 2010). Therefore, many
parents have expressed a need for more respite
Despite the parents’ initial reaction to their services (Baile & Costantini, 2013; Bromley
child’s diagnosis, having a child with ASD fre- et al., 2004; Dillenburger et al., 2010; Osborne
quently causes parental stress (Dillenburger, & Reed, 2008). Parents want more programs for
Keenan, Doherty, Byrne, & Gallagher, 2010). children with ASD that they could attend after
Therefore, support throughout the child’s life is school, on the weekends, or during school
needed in order to assist the parent with his/her breaks (Siklos & Kerns, 2006). Parents also
stress. It is important to note that studies regard- express a desire to have more training in applied
ing parental support are primarily based in the behavior analysis (ABA) or behavior therapy in
UK. Thus, access to services and availability of order to better manage their child’s behavior
services may vary from the USA. (Bromley et al., 2004; Dillenburger et al., 2010;
Studies indicate that over half of parents have Osborne & Reed, 2008).
been offered help or are currently receiving ser- Furthermore, parents suggest that profession-
vices for their child (Osborne & Reed, 2008; als provide them with referrals to individual ther-
Renty & Roeyers, 2006). Despite the number of apy for themselves to assist them in coping with
parents receiving professional assistance, many the diagnosis (Mansell & Morris, 2004). Whole
parents report that they have never received sup- family supports such as group or family therapy
port (Braiden et al., 2010; Osborne & Reed, are also recommended by parents to assist the
2008). Furthermore, parents report a time lapse family with stressors related to their child’s diag-
between receiving the diagnosis and obtaining nosis (Hall & Graff, 2010; Osborne & Reed,
services (Braiden et al., 2010). 2008). Additional services parents would like to
Mulligan et al. (2012) interviewed parents, receive include childcare (Bromley et al., 2004;
who had children diagnosed with ASD, regard- Hall & Graff, 2010), a case manager to assist
ing their service utilization. Parents reported with the coordination of services (Mulligan et al.,
that services were often limited and difficult to 2012), educational support, support groups, a
obtain. Many services had strict admission cri- professional to assess their child on a regular
teria, long wait lists, and/or provided few basis (Osborne & Reed, 2008), a family advo-
resources. Additionally, professionals did not cate, ABA schools/centers, multidisciplinary
assist parents in obtaining services for their support (Dillenburger et al., 2010), and transpor-
child. Following the diagnosis, the professional tation (Bromley et al., 2004).
informed the parent of services he/she would Parents who have children with ASD may
need to obtain for the child; however, they did experience financial strain. A parent may be
not provide any referrals. unable to work due to the amount of time he/she
Several studies have examined which ser- has to dedicate to obtaining services for the child
vices parents would like to receive. Overall, (Mitchell & Holdt, 2014). Insurance companies
parents want to receive more support and may not cover behavior therapy and/or diagnostic
services for their child (Bromley, Hare, Davison, evaluations (Hall & Graff, 2010). Additionally,
& Emerson, 2004). Therefore, professionals parents need financial assistance for other treat-
should provide information regarding supports ments (Siklos & Kerns, 2006). Overall, parents
and services to parents throughout their life- want more financial support for their children
time. Many parents feel that they do not have (Bromley et al., 2004; Hall & Graff, 2010; Renty
enough knowledge about ASD and would like & Roeyers, 2006).
more information regarding the disorder Many parents experience distress over their
(Dillenburger et al., 2010; Osborne & Reed, child’s future (Siklos & Kerns, 2006). Parents
2008; Renty & Roeyers, 2006). Respite services worry about their child’s ability to financially
for children can be limited, as many are only support themselves when he/she is an adult (Hall
available once a month or do not accept adoles- & Graff, 2010). Thus, parents need assistance
150 E.L. Holliday et al.

planning for their child’s future income. Other quality of specialized services in non-Western
future concerns include medical support, obtain- countries can be different than those in
ing employment as an adult, and the child’s abil- Western countries. Furthermore, in a review of
ity to live independently as an adult (Renty & health care system performance indicators
Roeyers, 2006). Due to these future concerns, among 14 industrialized countries, UK citizens
parents need services to assist with their child’s had notably more favorable views of their public
transition to adulthood. health system. In contrast, US citizens had the
least favorable views compared to the other
assessed countries. Although the association
Limitations of Current Research between global perspectives and more specific
and Issues Requiring Further Study clinical/health experiences is unknown, it is
worthwhile to consider the potential implica-
In order to continually identify best practice tions regarding the countries who have contrib-
strategies to implement during the diagnostic uted most readily to the research base. Going
process, professionals must have an empirically forward, research should continue to explore
based understanding of the variables that influ- both the global and cultural/regional-specific
ence parent and caregiver levels of satisfaction experiences of individuals navigating the ASD
and stress. One area of focus within the literature diagnostic process. In this pursuit, researchers
base is the diversity of participants from several may need to delve further into the complexities
different countries. A significant portion of the and norms of health care systems within and
research is from the UK followed by the USA, between countries in order to better understand
with other investigations based in regions such as the variables that could influence diagnostic per-
Canada, France, Australia, India, Italy, and ceptions. Further evaluation of the extent to
Singapore. This diversity of participants is desir- which these regional and cultural differences
able because the global experiences of families impact upon overall diagnostic experiences
can be evaluated, potentially leading to large- could provide greater conceptual clarity.
scale generalizability. However, this regional In addition to some of the previously identi-
diversity can also create further discrepancies fied correlates of overall satisfaction (e.g., age at
within a developing research base. Given some of diagnosis, wait time, number of professional
the likely differences in health care systems encounters, relationship with professionals),
related to service delivery and overall patient sat- future investigations should also explore the
isfaction (Thomson, Osborn, Squires, & Jun, potential impact of additional variables.
2013), the ability to generalize specific results Numerous studies have examined stress (e.g.,
among countries may be somewhat limited. Baker-Ericzén, Brookman-Frazee, & Stahmer,
Although it appears likely that shared experi- 2005; Hayes & Watson, 2013; Ritzema &
ences (i.e., satisfaction/dissatisfaction with diag- Sladeczek, 2011; Rivard, Terroux, Parent-
nostic process) may occur regardless of country Boursier, & Mercier, 2014) and psychological
of origin, it is possible that other cultural/ functioning (e.g., Harper, Dyches, Harper, Roper,
regional factors specific to systems of care could & South, 2013; Minnes, Perry, & Weiss, 2015) in
have an influence on outcomes. For example, parents of children with ASD, and it would be
Daley (2004) described that families in India noteworthy to assess the impact of these variables
often experience limited access to health care on ratings of overall satisfaction. It is possible
providers who are qualified to diagnose ASD. As that extraneous factors such as family stressors or
a result, some individuals seeking evaluations general parenting stress may impact perceptions
travel several days to receive care (Daley, 2004). of the diagnostic process. Similarly, further study
Certainly, in the time since this study, greater of child-specific variables could better inform
access to professionals specializing in ASD may practice. Considering that the level of ASD sever-
have occurred. However, the availability and/or ity has been found to be a significant predictor of
8 Stress and Satisfaction in the Diagnostic Process 151

parental stress (Lyons, Leon, Phelps, & Dunleavy, of overall satisfaction with the diagnostic process.
2010), future studies could explore the possible Assessing the contribution of each of these fac-
moderating impact of disability severity on tors within the overall construct of satisfaction
parental stress and overall satisfaction during the will enhance conceptual and theoretical under-
diagnostic process. Further investigation of these standing. Several studies (e.g., Brogan &
parent and child variables may help professionals Knussen, 2003; Jones et al., 2014; Moh &
to better understand, predict, and plan for future Magiati, 2012; Siklos & Kerns, 2007) have
diagnostic experiences. explored predictors and correlates of satisfaction
Additionally, many of the core studies in this through multivariate analysis. Continued explo-
area have included qualitative (e.g., Abbott et al., ration and confirmation of findings are necessary
2013; Goin-Kochel et al., 2006; Howlin & to further develop and refine theory.
Asgharian, 1999; Osborne & Reed, 2008; As the constructs of stress and satisfaction are
Punshon et al., 2009), quantitative (e.g., De Alba further explored, implications for the assessment
& Bodfish, 2011; Harrington et al., 2006; Howlin and measurement of related variables are rele-
& Moore, 1997; Jones et al., 2014; Siklos & vant. In the reviewed studies, many investigators
Kerns, 2007; Smith et al., 1994), and mixed- created their own questionnaires/surveys to
method research designs (e.g., Chamak et al., assess perceptions of stress and satisfaction (e.g.,
2011; Mansell & Morris, 2004; Molteni & Harrington et al., 2006; Jones et al., 2014;
Maggiolini, 2014). Many qualitative studies have Mansell & Morris, 2004; Smith et al., 1994). The
provided rich information that assists in under- measurement of these variables in other studies
standing the themes and experiences of parents (e.g., Brogan & Knussen, 2003; Howlin &
and families who encounter the ASD diagnostic Asgharian, 1999) was based on different ques-
process. Quantitative studies have also explored a tionnaires used during previous investigations
range of issues related to satisfaction with the (i.e., Howlin & Moore, 1997; Sloper & Turner,
diagnostic process. In the Daniels and Mandell 1993). When a range of questionnaires/surveys
(2014) review of literature that assessed dispari- are used with limited or no reported psychomet-
ties in age at ASD diagnosis, they suggested that ric qualities, it is difficult to condense outcomes
many of the identified disparities may be associ- and determine the reliability of measurement.
ated with methodological inconsistencies. For Additionally, inconsistencies also exist among
example, archival or administrative data (i.e., scales in the way in which overall satisfaction is
insurance claims or school/health records) were measured. Some satisfaction scores were derived
utilized in numerous studies whereas other from a single item, often based upon a four- or
researchers pursued primary data collection. five-point Likert scale. Other scores were based
Among those researchers who engaged in pri- upon multiple aspects of a questionnaire or
mary data collection, sampling techniques var- responses to several different items. If research-
ied. Overall, it appears important to build upon ers are acknowledging the multidimensionality
the methodological rigor of future research both of stress and satisfaction, it is unknown if single-
quantitatively and qualitatively. One particular item questions can accurately reflect the overall
emphasis should be on further development of experience and construct of these variables. A
the constructs of satisfaction and stress for indi- more comprehensive emphasis on multidimen-
viduals navigating the ASD diagnostic process. sional assessment may be warranted. As a result,
As noted, many variables (e.g., age of diagno- future research should explore scale develop-
sis, wait time, professional response to initial ment and refinement with specific measurement
concerns, professional relationship, diagnostic tools. Researchers are encouraged to extend
severity/subtype) have been examined related to beyond the face validity of questionnaires and
overall satisfaction. Further, several other vari- continue to examine construct and content valid-
ables have been posited as additional correlates ity. Enhanced understanding of the variables
152 E.L. Holliday et al.

primarily contributing to the constructs of stress Conclusion


and satisfaction could assist in more efficient and
effective identification of best practice strategies Navigating the diagnostic process for ASD can be
for professionals. a highly stressful period for parents and caregiv-
Finally, investigations should strive to nar- ers. Despite some limitations, the growing body
row the research-to-practice gap that can be of research in this area contributes to a better
common in the health and mental health fields. understanding of the experiences and perspectives
This gap between the identification of empiri- of families and individuals. The current literature
cally based strategies and their use in regular provides several implications for professionals
clinical practice has been discussed related to who are providing health and mental health ser-
ASD intervention research (e.g., Dingfelder & vices to children, families, and/or adults. As
Mandell, 2011; Stahmer, 2007; Stahmer & research continues to inform practice, profession-
Aarons, 2009), and it is possible that similar als should strive to provide high-quality services
challenges may be present within ASD assess- to individuals and families that are efficient, com-
ment/diagnostic research. One reason for the prehensive, collaborative, and respectful.
disconnect between researchers and practitio-
ners might occur due to a lack of attention or
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Diagnosing ASD in Very Early
Childhood 9
Paige E. Cervantes, Johnny L. Matson,
and Rachel L. Goldin

Individuals being evaluated for ASD must evince


Diagnosing ASD in Very Early all three items to be considered for diagnosis.
Childhood The restricted, repetitive patterns of behavior,
interests, or activities domain includes (1) stereo-
Autism spectrum disorder (ASD) is a common, typed and repetitive language use, motor move-
neurodevelopmental disorder defined by deficits ments, or object manipulations; (2) strict
in social and communication skills as well as the adherence to routines, ritualized patterns of ver-
presence of restricted, repetitive, and stereotyped bal or nonverbal behavior, and/or resistance to
behaviors, interests, or activities (American change; (3) restricted, fixated interests that are
Psychiatric Association [APA], 2013). According atypical in intensity or focus; and (4) aberrations
to the most recent Autism and Developmental in sensory reactivity or abnormal interest in sen-
Disabilities Monitoring (ADDM) Network study, sory input from the environment. Diagnosis
the current prevalence of ASD is estimated at 1 in requires evidence of at least two of these four
68 children in the USA (Centers for Disease symptoms. Symptoms from both domains must
Control and Prevention [CDC], 2014). The be present early in life (APA, 2013).
Diagnostic and Statistical Manual of Mental Currently, formal diagnosis of ASD is rarely
Disorders, Fifth Edition (DSM-5) criteria, fre- made before 3 or 4 years of age in the
quently used in the diagnosis of autism, concep- USA. However, researchers have shown that
tualizes ASD based on the presentation of most parents recognize signs and symptoms of
symptoms in two domains: social communication ASD in their children during the first or second
and social interaction, and restricted, repetitive year of life (De Giacomo & Fombonne, 1998;
patterns of behaviors, interests, or activities. Items Goin-Kochel, Mackintosh, & Myers, 2006;
within the social communication and social inter- Landa & Garrett-Mayer, 2006; Rogers, 2009;
action domain include (1) deficits in social- Wetherby et al., 2004; Zwaigenbaum et al.,
emotional reciprocity, (2) deficits in nonverbal 2007). Research findings indicate that behav-
communication, and (3) deficits in forming, main- ioral markers of ASD are apparent before 2
taining, and understanding social relationships. years of age and that diagnosis at 2 years old
can be made reliably. ASD diagnoses made in
children at 2 years old are stable and have been
found to persist a year later in 90 % of cases
P.E. Cervantes (*) • J.L. Matson • R.L. Goldin
Louisiana State University, Baton Rouge, LA, USA studied (Lord, 1995; Wetherby, Watt, Morgan,
e-mail: pcerva2@lsu.edu; johnmatson@aol.com & Shumway, 2007; Zwaigenbaum et al., 2007).

© Springer International Publishing Switzerland 2016 157


J.L. Matson (ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder,
Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-27171-2_9
158 P.E. Cervantes et al.

Although nearly a decade of research supports Revised (DSM-IV-TR) autism subtypes, Goin-
the reliability of identifying ASD at 2 years of Kochel and colleagues (2006) found that mean age
age, there are several factors that contribute to the of ASD diagnosis differed according to diagnosis;
lag in formal diagnosis we are experiencing. The while the mean age of autistic disorder diagnosis
first involves a lack of knowledge and experience was 3.4 years, children with PDD-NOS and
in both parents and professionals. Parents may be Asperger syndrome were diagnosed significantly
limited in their knowledge about typical develop- later (M = 4.2 and 7.5 years, respectively).
ment in young childhood, particularly if the child Variability of onset and presentation creates com-
experiencing developmental delays or atypicali- plexities in the early detection of ASD. Finally, the
ties is their firstborn. Parents may also dismiss existing ASD diagnostic criteria may not be appro-
any developmental concerns as problems their priate when diagnosing very young children, and
child will “grow out of” with time (De Giacomo criteria specifically for infants and toddlers has not
& Fombonne, 1998). This outlook would be been established (Goin-Kochel et al., 2006;
responsible for delaying professional consulta- Zwaigenbaum et al., 2007). The behavioral reper-
tion. De Giacomo and Fombonne (1998) found toire of infants and toddlers who are later diag-
that the mean age of parental concern for children nosed with ASD may be too limited to evaluate for
who are later diagnosed with ASD was 19 months the symptoms illustrated in the diagnostic criteria
but that it took approximately 5 months after that of the DSM (De Giacomo & Fombonne, 1998).
concern for parents to seek professional advice. Goin-Kochel and colleagues (2006) reported
Further, pediatricians and general practitioners that over 40 % of parents of children with ASD
are typically the first professionals to be consulted were unsatisfied with the diagnostic process.
with these developmental concerns (De Giacomo Delays in diagnosis have been found to increase
& Fombonne, 1998; Wetherby et al., 2004). These parental distress and coping difficulties.
primary care providers may not have the expertise Delayed diagnosis would also postpone child
necessary to distinguish parental concerns as enrollment into early intervention services (De
emerging ASD symptoms (De Giacomo & Giacomo & Fombonne, 1998; Goin-Kochel et
Fombonne, 1998; Goin-Kochel et al., 2006). For al., 2006). This is particularly problematic, as
instance, Shah (2001) studied medical students’ researchers have shown that early intervention
understanding about various aspects of ASD using has a greater benefit when provided before
a ten-item questionnaire addressing diagnostic cri- 3.5 years of age compared to after age 5. Early
teria, causes, symptomology, treatment, and out- intervention beginning before 4 years of age
come. Results indicated that fourth-year students has been associated with greater language,
averaged fewer than half correct responses on the social, and cognitive improvements (De
questionnaire. Lack of information about autism Giacomo & Fombonne, 1998; Wetherby et al.,
may contribute to professional hesitation in 2004). Working to improve the diagnostic pro-
addressing concerns about child development cess is essential for bettering the prognosis for
(Goin-Kochel et al., 2006; Shah, 2001). both children with ASD and their families.
Another obstacle for establishing earlier diag-
nosis is the heterogeneity in symptom presentation
and symptom onset in children with ASD Studying ASD in Young Childhood
(Zwaigenbaum, 2010). Individuals with ASD vary
in severity of symptom presentation; those chil- In order to improve early identification and diag-
dren with a milder presentation often are not diag- nosis of autism in young childhood, we must first
nosed until later in life when social demands understand autism onset and presentation in this
increase and their deficits become more pro- age population. Researchers and clinicians have
nounced (Goin-Kochel, 2006; White, Keonig, & employed several different retrospective and pro-
Scahill, 2007). Using the Diagnostic and Statistical spective strategies to study the emergence of
Manual of Mental Disorders, Fourth Edition, Text ASD in infants and toddlers. It is from this line of
9 Diagnosing ASD in Very Early Childhood 159

research where early diagnostic measures, prac- parent report is a relatively valid method of
tices, and procedures arise. In this section, these studying early onset and symptomology of ASD
strategies are discussed. (Ozonoff et al., 2008).

Retrospective Studies Home Videos

Parent Report Studying home videos offered the first opportu-


nity for objective examination of the early behav-
Obtaining information regarding early autism iors exhibited by children who were later
emergence via parent report is a common method diagnosed with ASD (Rogers, 2009; Saint-
used in research and clinical practice. Georges et al., 2010; Zwaigenbaum et al., 2007).
Retrospective parent report is efficient in collect- Compared to parent report methods, studying
ing early history. Parents and caretakers observe home videos allows for more objective assess-
their child’s behavior across time and across vari- ments by trained and unbiased viewers of early
ous settings allowing for a wide range of infor- behaviors in children with ASD (Zwaigenbaum
mation to be gathered (Ozonoff, Heung, Byrd, et al., 2007).
Hansen, & Hertz-Picciotto, 2008; Zwaigenbaum Several concerns regarding the representa-
et al., 2007). tiveness and standardization process in the
Several limitations to studying ASD onset and home video method have been raised (Ozonoff
early symptomology by parent report exist. First, et al., 2008; Rogers, 2009; Saint-Georges et al.,
parent report is prone to errors of memory and 2010; Zwaigenbaum et al., 2007). Rather than
affected by the passage of time (Ozonoff et al., collecting random samples of behavior, home
2008; Rogers, 2009; Zwaigenbaum et al., 2007). videos are filmed for particular reasons in spe-
The level of parental knowledge about typical cific settings and may not represent behavior
child development also affects parent report. across all settings (Rogers, 2009). Further, it is
Parent ability to recall and recognize subtle social possible that parents stop filming when children
and communication atypicalities may be limited behave inappropriately or undesirably
compared to clinicians or researchers specialized (Zwaigenbaum et al., 2007). Because of this,
in ASD (Rogers, 2009; Zwaigenbaum et al., collecting data regarding ASD-specific behav-
2007). Recognition of symptom onset has been iors (e.g., interaction patterns, object explora-
found to be particularly difficult for parents tion, sensory response) may require additional
(Ozonoff et al., 2008). Parent report is subject to parent report methods. Another issue involves
bias caused by knowledge of their child’s later the variability across families in the amount,
diagnosis; parents may report more early behav- content, and quality of home videos. Some fam-
iors and symptoms consistent with the diagnosis ilies do not videotape their children at all, rais-
(Ozonoff et al., 2008; Zwaigenbaum et al., 2007). ing concerns of the generalizability of findings
Last, assessors conducting parent report inter- across the ASD population. Because home vid-
views must be trained to ask questions that are eos are made to preserve family memories, each
clear and full but are not leading. They must also family will have varying activities filmed in
be trained to provide probes when necessary, as varying settings. This variability makes stan-
parents often do not conceptualize symptoms in dardization difficult and time intensive (Ozonoff
the same way as professionals in the field et al., 2008; Zwaigenbaum et al., 2007).
(Ozonoff et al., 2008). Despite limitations, the home video method
Despite the limitations of parent report, stud- has led to significant findings regarding the early
ies have shown moderate consistency between distinguishability of ASD symptoms in infants
the behaviors and symptoms parents report and (Rogers, 2009). Further, results from recent
those seen on videotape footage. Therefore, prospective studies have supported the findings
160 P.E. Cervantes et al.

of home video research. Therefore, home video child in the family has ASD is as high as 8 % and
analysis is viewed as a valid and reliable method 35 % when the family has two children with
of studying ASD emergence in infancy and tod- ASD (Landa & Garrett-Mayer, 2006). Because
dlerhood (Saint-Georges et al., 2010). of this, prospective studies on high-risk siblings
can begin as early as prenatal periods offering
unique opportunities to study neurobiological
Prospective Studies underpinnings of ASD (Landa & Garrett-Mayer,
2006; Zwaigenbaum, 2010). Studying siblings is
Prospective studies test specific hypotheses uti- not without limitations, however. The character-
lizing experimental methods. These studies are istics of the older sibling with ASD (e.g., sever-
designed to explore particular behavioral or bio- ity level) may influence the likelihood of
logical constructs in a standardized manner participation. Further, generalizability of results
(Zwaigenbaum, 2010). Multiple assessments are may be limited due to possible genetic differ-
conducted across a long period of time on the ences in single- incidence versus multiple-
same sample of infants and toddlers. This often incidence families (Landa & Garrett-Mayer,
involves frequent naturalistic assessments of par- 2006; Zwaigenbaum, 2010).
ticipant development and less frequent “land- Utilizing children who screen positive for
mark” evaluations using standardized measures delays in development offers the opportunity to
of language, cognition, and adaptive functioning. study children with no family history of ASD;
The developmental progression of high-risk (e.g., however, these studies rarely begin before the
siblings of children with ASD) and low-risk chil- first year of life when delays cannot be reliably
dren is compared. An endpoint of at least 3 years identified (Zwaigenbaum, 2010). Sampling
old is most often employed (Landa & Garrett- biases may occur when using this high-risk sam-
Mayer, 2006). ple because parents with concerns may be more
There are several advantages of employing a likely to participate. Further, data collection
prospective design. Prospective studies are not beginning after the first screening restricts the
subject to the same biases seen in parent report age range that can be studied (Landa & Garrett-
and home video research (Landa & Garrett- Mayer, 2006). Young children at a heightened
Mayer, 2006; Ozonoff et al., 2008). Prospective risk for ASD due to a preestablished medical or
methods provide uniform data points and meth- genetic disorder may also be used in prospective
ods of data collection across participants. The studies. Among these disorders are fragile X syn-
longitudinal nature of prospective designs also drome, chromosomal aberrations, and tuberous
allows for improvement in the understanding of sclerosis. However, these medical conditions are
developmental trajectories of individuals with rare and are associated with unique presentation
ASD (Landa & Garrett-Mayer, 2006). differences in ASD, making this population dif-
Several populations have been used to study ficult to study and results difficult to generalize
ASD onset and symptom emergence prospec- (Landa & Garrett-Mayer, 2006).
tively. Among these populations are children Weaknesses of prospective designs can be
with a sibling with ASD, children who fail popu- found in both the age of enrollment and the age of
lation screeners, and children who have specific endpoint. Results may vary based on age of
medical or genetic diagnoses that often co-occur enrollment. If participants are enrolled at or after
with ASD (Landa & Garrett-Mayer, 2006). 1 year of age, there is a heightened risk of sam-
Using siblings of children with ASD in prospec- pling bias because parents may be observing and
tive studies offers a great deal of feasibility may be concerned about behaviors consistent
(Landa & Garrett-Mayer, 2006; Zwaigenbaum, with ASD (Rogers, 2009). Variation may also
2010). ASD has among the highest recurrence stem from the determined endpoint of the study.
risk of all neuropsychiatric disorders; the risk of Studies using a later endpoint (e.g., 60 months)
having a child who will develop ASD when one may have higher rates of ASD compared to those
9 Diagnosing ASD in Very Early Childhood 161

using earlier endpoints. This would result from Communication


misclassification into the “typical development”
group of children who have milder presentations Speech and language problems are the most
of ASD such as those individuals who would common first concern for parents of children who
have been classified as having PDD-NOS or are later diagnosed with ASD (De Giacomo &
Asperger syndrome in the DSM-IV-TR (Landa & Fombonne, 1998). Researchers have shown that
Garrett-Mayer, 2006; Rogers, 2009). These deficits in both verbal and nonverbal communica-
milder cases of ASD are often diagnosed later tion begin at 12 months of age in infants who
when social demands increase and atypicalities develop ASD (Rogers, 2009). Verbal communi-
become more pronounced. cation deficits can present as delayed develop-
Despite these weaknesses, prospective studies ment of language, abnormal use of language, or a
of high-risk infants offer increased objectivity in complete lack of verbal language (Inglese &
studying infants and toddlers with Elder, 2009). Although considered a part of typi-
ASD. Prospective studies also present a new cal language development, echolalia, or repeat-
opportunity to study behavioral and biological ing words or phrases previously heard, is often
markers of ASD and have helped to improve the observed beyond normal time limits in young
understanding of the neurobiology of ASD, the children with ASD. Abnormal voice intonation
available early detection measures, and hold when speaking is also seen (Chawarska, Klin,
implications for early intervention. Paul, & Volkmar, 2007; Rogers, 2009). Infants
and toddlers with ASD have difficulty expressing
their wants, display more stereotyped vocaliza-
ASD Symptom Emergence tions, produce less vocalizations directed towards
other people, and have a reduced number of
Results from retrospective and prospective stud- words and sentences compared to their peers.
ies indicate that the most common onset pattern Receptively, young children with ASD present
noted in children with ASD is gradual, where with deficits in following directions and have an
parents become increasingly aware of certain inconsistent response to their name being called
atypical symptoms or lack of progression through (Saint-Georges et al., 2010; Wetherby et al.,
developmental milestones during the child’s first 2004; Zwaigenbaum, 2010). In regard to nonver-
2 years of life (Werner, Dawson, Munson, & bal communication, infants and toddlers who are
Osterling, 2005). Though a third of parents rec- diagnosed with ASD engage in less or no com-
ognize atypicalities before their child’s first birth- municative gestures (e.g., pointing; Saint-
day, most parental concerns begin between the Georges et al., 2010; Wetherby et al., 2004).
first and second year of their child’s life (De
Giacomo & Fombonne, 1998). A later diagnosis
of ASD is associated with increasing concerns Socialization
from 12 to 18 months of age, but not concerns at
6 months of age (Zwaigenbaum, 2010). In cases of early ASD onset, social symptoms can
Significant differences between infants and tod- be observed from several months after birth.
dlers who are typically developing, developmen- Infants who are later diagnosed with ASD often do
tally delayed, and who later receive a diagnosis not assume an anticipatory posture before being
of ASD have been found at 13–15 months for held by an adult. Infants with ASD may show little
socialization deficits, 16–18 months for repetitive social interest and a lack of responsiveness to
behaviors, and 19–21 months for communication social stimuli. This population shows deficits in
symptoms (Wetherby et al., 2007). This section interaction, and higher nonsocial attention, and
describes specific symptoms across several demonstrates less appropriate emotions and facial
developmental domains that characterize infants expressions. Behaviors predictive of a later diag-
and toddlers who are later diagnosed with ASD. nosis of ASD in 12-month-old children include
162 P.E. Cervantes et al.

deficits in eye gaze, little social smiling, and delays Other


in play skills and imitation (Wetherby et al., 2004;
Zwaigenbaum et al., 2007; Zwaigenbaum, 2010). Beyond the deficits observed within the core
Joint attention, a behavior typically developed by domains of autism, ASD has been found to
age 12 months, is rarely observed in infants who affect several areas of development early in life
develop ASD (Saint-Georges et al., 2010; (Zwaigenbaum, 2010). These associated symp-
Zwaigenbaum et al., 2007). Young children with toms include impairments in attention regula-
ASD rarely share their interests and enjoyments tion, cognitive deficits, and hypoactivity
with caretakers and show a lack of interest in their (Saint-Georges et al., 2010; Zwaigenbaum,
peers (Saint-Georges et al., 2010; Wetherby et al., 2010). Temperamental difficulties are also seen
2004). Researchers have found that children who in young children who later receive an ASD
later receive an ASD diagnosis are less likely to diagnosis (Rogers, 2009; Saint-Georges et al.,
attend to an adult feigning distress (Zwaigenbaum 2010). Significant differences in motor develop-
et al., 2007). By 2 years old, social symptoms ment have been observed in young children with
become more pronounced. At 2 years of age, chil- ASD. Researchers have found that infants and
dren with ASD interact poorly with other people, toddlers who develop ASD show signs of hypo-
spend less time looking at others, show poor eye tonia as well as deficits in fine and gross motor
contact, demonstrate deficits in imitation, and skills in the first 2 years of life (Landa & Garrett-
express less positive affect (Saint-Georges et al., Mayer, 2006; Rogers, 2009; Saint-Georges
2010; Werner et al., 2005). et al., 2010).

Restricted and Repetitive Behaviors Variability in Onset

Restricted and repetitive behaviors are rarely seen From its first description (Kanner, 1943), autism
before 12 months of age. In fact, several research- has been conceptualized as a disorder present
ers have found that stereotypies and self-stimula- from birth; however, results from several longitu-
tory behaviors in children who later develop ASD dinal studies have shown that the course and pre-
did not significantly differ from typically develop- sentation of ASD can vary tremendously between
ing peers in the first year of life (Saint-Georges individuals, or even within the same individual
et al., 2010; Wetherby et al., 2004). By 12–18 over time (Saint-Georges et al., 2010; Volkmar,
months of age however, young children with ASD State, & Klin, 2009). Though most young chil-
display aberrations in toy play such as less func- dren who are diagnosed with ASD present with
tional use and atypical exploration (e.g., spinning, the early symptom emergence discussed above,
rotating, repetitive actions, unusual visual regard; researchers have indicated that around 30 % of
Rogers, 2009; Zwaigenbaum, 2010). Atypical children experience late onset of ASD (Ozonoff
reactions to sensory input may also be present in et al., 2008). Of particular interest in this onset
this age group (Zwaigenbaum, 2010). Though variability research is autistic regression.
repetitive motor movements may be less prevalent Regression can be loosely defined as a loss of
in infant and toddlerhood, these behaviors may previously acquired skills before age 3 years
also be more difficult to differentiate from age- (Kalb, Law, Landa, & Law, 2010; Ozonoff et al.,
appropriate movements observed in typically 2008). While some researchers require a loss of
developing infants. When assessing an infant for language skills to characterize regression, a child
ASD, Zwaigenbaum and colleagues (2007) sug- can experience regression over several different
gest looking at not only the type of repetitive developmental domains (i.e., social, motor, and
behaviors present, but also the persistence, qual- potentially cognitive skills). Researchers have
ity, frequency, and contexts under which the found that approximately half of children who
behavior occurs. experience regression have both social and
9 Diagnosing ASD in Very Early Childhood 163

language skill losses, and up to one-third of Differences in presentation and prognosis


children experience social losses only (e.g., loss between children who experience varying onset
of eye-to-eye gaze, decreased response to name; patterns are unclear. Some researchers have sug-
Kalb et al., 2010; Ozonoff et al., 2008). gested that children with regression have wors-
The traditional conceptualization of regres- ened communication, social, and behavioral
sion involves a loss of skills following typical outcomes compared to those with early-onset
development. At 1 year old, children who experi- ASD. However, several researchers have found
ence this onset pattern have been found not to dif- no significant differences in presentation or prog-
fer from typically developing peers in nosis between individuals with early and late
social-communication behaviors (e.g., eye gaze, onsets (Kalb et al., 2010; Werner et al., 2005).
social smiling, responding to name, vocalizing to What is clear is that ASD symptom emergence
others, points). However, by 2 years of age, these can occur as part of a later onset pattern; thus,
children show no differences from early-onset conducting multiple assessments over the span of
ASD cases in pointing, social gaze, response to infant and toddlerhood is imperative for the early
name, and language development (Saint-Georges identification and diagnosis of ASD in young
et al., 2010). children (Kalb et al., 2010; Ozonoff et al., 2008;
While it was previously thought that autism Rogers, 2009).
onset occurred either early or as part of a regres-
sion from typical development, recent research
indicates that there may be several different onset Differential Diagnosis
patterns that are more prevalent than traditional
regression (Ozonoff et al., 2008). For example, One of the most difficult aspects of the early
several young children with ASD experience typ- ASD diagnostic process is differentiating symp-
ical developmental milestone progression before toms that indicate autism versus symptoms con-
a “developmental plateau.” These children may sistent with delay in general. Of particular
display intact early social development and mild importance in early identification assessment is
nonspecific delays until 2 years of age when pro- identifying signs and symptoms to discriminate
gression stops. These children may exhibit ASD from other developmental, intellectual, or
mutual attention, emotional reactions, and social language disorders (Gillberg et al., 1990; Howlin,
interest in games like peek-a-boo the same as 2006). Several measures have been developed to
children who develop typically. Differentiation in aid in differential diagnosis and will be discussed
skills, however, becomes clear around 24 months in later sections.
of age (Saint-Georges et al., 2010; Tager- Researchers have indicated that it is much
Flusberg, 2010). Some researchers have theo- more difficult to differentiate ASD from intellec-
rized that this trend represents an inability for tual or developmental disabilities (IDDs) early in
children with ASD to transform basic social life. In fact, parents of children with ASD
behaviors into more complex and multifaceted reported significantly higher social, communica-
skills necessary for interpersonal competency tion, repetitive behavior, and regulatory (i.e., eat-
(Kalb et al., 2010; Ozonoff et al., 2008; Saint- ing, sleeping difficulties) symptoms than parents
Georges et al., 2010). Another onset pattern iden- of typically developing infants by the end of the
tified in the research may actually be the most first year of life. However, ASD parents did not
common of the late-onset patterns. A majority of report significantly more symptoms compared to
children with regression demonstrate subtle parents of children with developmental disorders
developmental atypicalities prior to the loss of (DD) until 13–24 months of age. Socialization
skills. Several researchers have characterized this differences were the first to differentiate ASD
pattern as a mixed onset showing both delays and and DDs at 13–15 months old while communica-
losses (Ozonoff et al., 2008). tion, regulatory, and repetitive behavior symptoms
164 P.E. Cervantes et al.

did not differ until closer to 2 years of age ASD and medical problems (Baghdadli, Picot,
(Ozonoff et al., 2008; Werner et al., 2005). Pascal, Pry, & Aussilloux, 2003; De Giacomo &
Symptoms that appear nonspecific to ASD Fombonne, 1998).
include deficits in symbolic play skills and func- Language disorders can also be difficult to dif-
tional toy use, repetitive behavior and object play, ferentiate from ASD. Impairments in verbal com-
unusual posturing, problems in motor activity, munication and comprehension occur in both
and diminished looking at objects held by others ASD and language disorders; however, these
(2007; Saint-Georges et al., 2010, Wetherby deficits in addition to social communication
et al., 2004). Rather than reflecting ASD, these impairments can distinguish ASD from language
symptoms likely reflect cognitive delay and are delays (Saint-Georges et al., 2010). Wetherby
experienced by children with IDDs at similar and colleagues (2007) indicated that assessing
rates (Wetherby et al., 2004). the child’s range of facial expression, use of ges-
Though there is significant symptom overlap tures, and pointing to items of interest discrimi-
in infants and toddlers with ASD and children nates children with ASD from children with
with intellectual disability (ID) or DD, a greater language delays.
number of behaviors can be used to distinguish
ASD from IDDs in the second year of life when
social behavior is expected to become more com- Tools Used in the Diagnosis of ASD
plex and the atypicalities of ASD become more
pronounced (Gillberg et al., 1990; Saint-Georges Researchers and clinicians in the field have devel-
et al., 2010; Werner et al., 2005; Wetherby et al., oped a number of measures designed to assess
2004, 2007; Zwaigenbaum et al., 2007). These ASD with good reliability and validity. Accurate
distinguishing symptoms include deficits in gaze assessment is recommended to first begin with
shifts, lack of joint attention behaviors, use and a detailed account of developmental history,
comprehension of gestures, eye contact, gathering information on the development of
decreased interest in interaction, less positive communication and social skills, as well as the
affect, lack of shared enjoyment or interests, presence of odd or abnormal behaviors or inter-
appropriate facial expression, and lack of orienta- ests, and repetitive behaviors (Howlin, 2006).
tion to name. Restricted and repetitive behavior Subsequently, three main methods of diagnosis
symptoms shown to distinguish ASD and IDDs are used including observational measures, diag-
include unusual arm, hand, or finger movements, nostic interviews, and informant-based behavior
unusual sensory behavior, and repetitive move- checklists. Comprehensive ASD evaluation often
ments with objects; however, these symptoms consists of a battery of measures utilizing sev-
may lack specificity as many individuals with eral of these methods for assessment. Additional
IDDs also engage in these behaviors (Gillberg measures of associated constructs (e.g., devel-
et al., 1990; Saint-Georges et al., 2010; Werner opmental progression, adaptive behavior skills,
et al., 2005; Wetherby et al., 2004, 2007; cognitive functioning, psychopathology) are
Zwaigenbaum et al., 2007). Researchers have often used and provide diagnostic utility. Each
posed that response to name in addition to quality method of assessment offers its own strengths
of eye contact and affect, and interest in interac- and weaknesses, which will be discussed in this
tion, may be the best predictors of a later ASD section of the chapter.
diagnosis (Saint-Georges et al., 2010).
Of note, it is not uncommon for ASD to co-
occur with ID. When children have both ASD Observational Methods
and ID, age of first concern, first evaluation, and
eventual diagnosis is significantly younger than Observational methods for assessing ASD are
children with ASD without ID. Similar results based on clinician ratings and can be imple-
have been found for children with co-occurring mented in a range of settings (e.g., clinic/office,
9 Diagnosing ASD in Very Early Childhood 165

the child’s natural environment, school/daycare). reported for children and adolescents/adults sepa-
Some observational methods are highly struc- rately and include three categories, no-to-minimal
tured and require the use of specific toys and symptoms of ASD, mild-to-moderate symptoms
objects, while others are less standardized and of ASD, and severe symptoms of ASD.
allow the clinician to elicit behaviors with a vari- The CARS-2 is widely used with reported high
ety of methods. During an observational session, internal consistency and inter-rater reliability
the child should be provided opportunities to play (Schopler et al., 2010). The measure is appropri-
alone as well as interact with others. Core fea- ate for use with individuals 2 years of age and
tures of ASD should be assessed to determine if older, and is based on comparisons with same-
symptoms are present and identify the context aged, typically developing peers. Currently the
(e.g., settings, time of day) under which the measure is utilized in both research and clinical
behaviors and symptoms occur. An advantage of settings (Chlebowski, Green, Barton, & Fein,
observational methods is the opportunity for a 2010; Mayes et al., 2009). Strengths of the mea-
clinician trained in child development to compare sure include brief and easy administration; the
behavioral observations with developmental measure takes approximately 15 min to adminis-
norms. This allows the clinician to make an ter. The CARS-2 requires less training than some
informed decision about the course of the child’s other observational measures and has been trans-
development. Limited observation time however lated into several languages. The measure how-
is a major weakness, as low-frequency behaviors ever is limited in that the CARS was developed
may be missed. Parent-reported behaviors such prior to the publication of the DSM-IV-TR and
as repetitive behaviors or restricted interests may DSM-5. Therefore, social deficits are not
not occur if they are not elicited during the obser- weighted as the most pervasive impairment of
vation period. Therefore, it is imperative to use a ASD (Lord & Risi, 1998). Despite this limitation,
variety of diagnostic techniques when conduct- the measure is still well regarded (Inglese, 2009).
ing an ASD evaluation. Two frequently used Internal consistency for the CARS-2 was
observational measures include the Childhood found to be robust (0.93; Schopler et al., 2010).
Autism Rating Scale, Second Edition (CARS-2) Good inter-rater consistency was reported for
and the Autism Diagnostic Observation Schedule, individual items (0.55–0.93), and good test–retest
Second Edition (ADOS-2) discussed below. reliability was also reported (0.78–0.90; Hedley
et al., 2015). Schopler and colleagues (2010)
evinced a sensitivity of 0.88 and a specificity of
Childhood Autism Rating Scale, 0.86 for identifying those with ASD from those
Second Edition (CARS-2) without ASD. As the current version of the mea-
sure was recently released, further research is
The CARS-2 (Schopler, Van Bourgondien, required to confirm these findings; however, the
Wellman, & Love, 2010) is an observational findings suggest that the measure is useful for
assessment comprised of 15 items (relating to differential diagnosis.
people; imitation; emotional response; body use;
object use; adaptation to change; visual response;
listening response; taste, smell, and touch Autism Diagnostic Observation
response and use; fear/nervousness; verbal com- Schedule, Second Edition (ADOS-2)
munication; nonverbal communication; activity
level; level and consistency of intellectual The ADOS-2 (Lord, Luyster, Gotham, & Guthrie,
response; and general impressions). The measure 2012; Lord, Rutter, et al., 2012) is a semi-struc-
is completed by a clinician after observation of a tured, standardized observational assessment.
child’s behavior and review of developmental his- The measure takes approximately 30 min to con-
tory. Items are rated on a scale of 1 to 4, ranging duct. Substantial training is required for reliable
from normal to severely abnormal. Cutoffs are administration. The ADOS-2 includes five different
166 P.E. Cervantes et al.

modules; each module is designed to assess also clarify informant responses to ensure that
individuals with differing levels of language. A they are receiving the most accurate information
module is selected before administration depending upon which to make clinical judgments.
on the child’s expressive language capacities Limitations of diagnostic interviews include
(Bertoglio & Hendren, 2009). The Toddler lengthy administration times and extensive train-
Module (ADOS-T) was specifically developed for ing requirements. The Autism Diagnostic
children between 12 and 30 months of age who Interview-Revised (ADI-R) is a structured, diag-
do not consistently use phrase speech. The nostic interview commonly used in ASD evalua-
ADOS-T targets social affect and restricted and tions and is detailed below.
repetitive behavior through 11 primary activities
and 4 secondary tasks. Parent involvement may
be used to help the child engage with the prompts Autism Diagnostic Interview-Revised
provided (Luyster et al., 2009).
Items are rated on a four-point scale ranging The ADI-R (Lord, Rutter, & LeCouteur, 1994;
from no evidence of abnormality related to Rutter, LeCouteur, & Lord, 2003) is a structured
autism to definite evidence. For the ADOS-T, a interview administered by a trained clinician to a
total score is calculated to determine range of primary caregiver. The ADI-R is appropriate for
concern: little-to-no concern, mild-to-moderate children with a mental age of 2 years and older
concern, and moderate-to-severe concern (Cox et al., 1999; Lord, 1995). The interview
(Guthrie, Swineford, Nottke, & Wetherby, 2013). consists of five sections: opening questions; com-
The ADOS-T boasts good inter-rater reliability at munication; social development and play; repeti-
0.84 (Guthrie et al., 2013; Luyster et al., 2009). tive and restricted behaviors; and general
In terms of differential diagnosis, the ADOS-T behavior problems. It is often recommended that
appears to sufficiently distinguish between ASD the ADI-R be given in conjunction with the
and non-ASD. The measure has a reported sensi- ADOS-2 in order to collect information on cur-
tivity of 0.90 and specificity of 0.71 (Guthrie rent behavior through observation and early
et al., 2013; Luyster et al., 2009). A major limita- development through the interview.
tion of the measure is that behavior observed and The interview consists of 93 questions related
scored during the assessment only allows the to current behavior as well as developmental his-
examiners to rate current level of functioning. tory. Eight specific areas are targeted through
The measure is unable to assess development questioning including the child’s background,
over time which has been deemed important in early development and developmental mile-
accurate assessment (Howlin, 2006). stones, language acquisition or regression, cur-
rent language and communication functioning,
social development and play, interests and
Diagnostic Interview behaviors, and other clinically relevant behav-
iors. Responses for each question are coded and
Diagnostic interviews rely on informants, typi- entered into either a diagnostic algorithm or a
cally parents or caregivers, to provide detailed current behavior algorithm. The measure can be
information in response to interview questions. used to diagnose autism only based on the DSM-
Diagnostic interviews differ from informant- IV-TR and International Classification of
rated behavior checklists in that the clinician is Diseases, Tenth Edition (ICD-10).
able to gather more precise information from Examination of psychometric properties by
informants; clinicians may prompt caregivers to the authors indicated good inter-rater reliability
elaborate on their responses and/or ask follow- and test-retest reliability ranging from 0.62 to
up questions when needed. The ability of a clini- 0.89 (Lord et al., 1994). High internal consis-
cian to obtain detailed information is a major tency for each domain, social (0.95), restricted
benefit of diagnostic interviews. Clinicians can and repetitive behaviors (0.69), and communication
9 Diagnosing ASD in Very Early Childhood 167

(0.84), was reported (Lord et al., 1994). psychopathology, and challenging behaviors.
Sensitivity ranged from 0.86 to 1.00 and specific- Demographic information is also collected includ-
ity ranged from 0.75 to 0.96 in distinguishing ing variables such as gender, ethnicity, age of
ASD from other developmental disabilities (Lord parental first concern, additional diagnoses, and
et al., 1997). Weaknesses of the interview include family history of ASD. In Part 1 of the BISCUIT,
a lengthy administration time at approximately informants rate their child compared to same-aged
2 h; findings are based solely on parent report; peers on a Likert scale ranging from 0 to 2. A score
and extensive training is necessary to administer of 0 corresponds to “not different; no impairment,”
the measure. 1 corresponds to “somewhat different; mild impair-
ment,” and 2 corresponds to “very different; severe
impairment” from same-aged peers. Factor analy-
Rating Scales sis of the items revealed three distinct factors:
socialization/nonverbal communication, repetitive
Rating scales are similar to diagnostic interviews behaviors/restricted interest, and communication
in that information about the child is collected (Matson, Boisjoli, Hess, & Wilkins, 2010). Total
directly from his or her primary caregivers. scores are calculated to determine the range of
Caregivers rate items measuring behavior and impairment: no autism/atypical development, pos-
symptoms on a Likert scale. Ratings are used to sible ASD, and probable ASD (Horovitz & Matson,
determine the presence of certain behaviors and 2013; Matson, Wilkins, Sharp, et al., 2009).
symptoms, as well as the intensity or level of the The BISCUIT-Part 1 is reported to have sound
symptoms. Rating scales offer the advantage of internal reliability (0.97) and an overall correct
efficiency as they are often brief to complete and classification rate of 0.89 (Matson, Wilkins,
easy to administer. Furthermore, limited training Sevin, et al., 2009). Internal consistency of all
is required to score and interpret results. Rating factors was also found to be sufficient. Internal
scales can also be completed by more than one consistency is α = 0.93 for the socialization/non-
caregiver, allowing for consistency in reporting verbal communication factor, α = 0.90 for the
to be compared. Rating scales are not without repetitive behaviors/restricted interest, and
limitations as accuracy of caregiver reporting is α = 0.87 for the communication factor (Matson
more difficult to ensure. Caregivers may over- or et al., 2010). When differentiating children with-
underreport symptoms due to lack of knowledge out ASD from those with PDD-NOS, the mea-
about typical development, since many rating sure has high specificity (0.83) and sensitivity
scales ask caregivers to compare their child’s (0.90; Matson, Wilkins, Sharp, et al., 2009).
behavior against that of a same-aged peer.
Discussed below are two frequently administered
rating scales: the Baby and Infant Screen for Modified Checklist for Autism
Children with aUtIsm Traits (BISCUIT) and the in Toddlers
Modified Checklist for Autism in Toddlers
(M-CHAT). The M-CHAT (Robins, Fein, Barton, & Green,
2001) is a parent report measure designed to
screen toddlers 16–30 months of age. The mea-
Baby and Infant Screen for Children sure contains 23 items that can be completed in
with aUtIsm Traits (BISCUIT) approximately 5–10 min. Six of the 23 items are
considered critical items. A child that fails to
The BISCUIT is an informant-rated measure pass 3 or more of the 23 total items or 2 or more
designed to aid in early detection of ASD in chil- of the 6 critical items warrants a referral for the
dren 17–37 months of age (Matson, Boisjoli, & child to have a true diagnostic evaluation. A sup-
Wilkins, 2007). The measure is comprised of three plementary follow-up interview is available if
parts assessing ASD symptomatology, comorbid parental responses suggest the possibility of
168 P.E. Cervantes et al.

ASD. The follow-up interview probes for further child’s development from 0 to 2 (based on
clarification and information on failed items. The observation or informant report). A score of 0
M-CHAT is quick to administer and easy to corresponds to “no ability,” 1 corresponds to
access as it is available free of charge on the “emerging ability,” and 2 corresponds to “ability
Internet. present.” The measure yields developmental quo-
Internal consistency has been found to be ade- tients that serve as indicators for overall develop-
quate (α = 0.85 for the entire measure and 0.83 mental growth in young children. Developmental
for critical items; Robins et al., 2001). A sensitiv- quotient scores provide insight into where a
ity of 74.1, a specificity of 87.5, and a classifica- child’s development lies on a continuum com-
tion rate of 83.0 have been reported (Matson, pared to other children. The BDI-2 has been
Wilkins, Sharp et al., 2009). Accurate identifica- found to have acceptable test-retest reliability of
tion of children later diagnosed with an ASD is α = 0.80, as well as excellent internal consistency
estimated to be approximately 85 % (Martínez- of 0.98–0.99 (Bliss, 2007; Newborg, 2005).
Pedraza & Carter, 2009). The Bayley Scales of Infant Development-
Third Edition (Bayley-III; Bayley, 2006) is
designed to identify children with developmental
Additional Measures for Diagnosis delays and provide information that is useful for
intervention planning. The measure is normed for
When conducting diagnostic evaluations for use with children 1 month to 42 months of age.
ASD, assessing for delays in milestones across Three scales examining cognitive, language, and
multiple developmental domains can provide motor skills are administered to the child while
additional diagnostic utility. Developmental information about the child’s social-emotional
inventories can be an important first step in iden- functioning and adaptive skills are obtained from
tifying children at risk for ASD. Developmental the child’s caregiver (Michalec, 2011). Results
inventories provide information regarding a are provided in the form of scaled scores, percen-
child’s developmental strengths and weaknesses tile ranks, growth score equivalents, and develop-
compared to same-aged typically developing mental age scores in months and days. These
peers. Additionally, evaluating cognitive func- results can be used to determine if impairments
tioning in very young children using tests that are exhibited in all areas of development or in
yield an IQ is difficult as these tests focus on ver- particular isolated areas. Clinicians may use this
bal, conceptual, and problem-solving skills. information to rule out certain diagnoses or guide
Results from IQ tests in young children are gen- how they conduct the rest of their evaluation. The
erally considered unstable (Fombonne, 2003). Bayley-III has been found to have acceptable test-
Therefore, measuring cognitive abilities in regard retest reliability of α = 0.80 for the cognitive,
to developmental milestones with developmental language, motor, and adaptive skills domains.
inventories may be more informative in this pop- Internal consistency for the social-emotional
ulation. Such information is important for deter- items has been found to range from 0.83 to 0.94,
mining the level of overall impairment as well as and 0.76 to 0.91 for the sensory processing items
informing intervention strategies and prognosis. (Albers & Grieve, 2007).
Further, developmental inventories can assist cli- Along with information on developmental
nicians in differential diagnosis, particularly with functioning, information on adaptive functioning
regard to IDs. can be useful in the diagnosis of ASD. Adaptive
A widely used measure, the Battelle functioning refers to the ability of a child to com-
Developmental Inventory, Second Edition (BDI-2; plete developmentally appropriate daily activi-
Newborg, 2005), evaluates personal/social, ties. Since it is difficult to acutely measure IQ in
adaptive, motor, communication, and cognitive young children, adaptive functioning provides
development in children from birth through age another means to estimate a child’s intellectual
7. Administrators rate the quality of aspects of a functioning. Level of intellectual functioning
9 Diagnosing ASD in Very Early Childhood 169

may be important for differential diagnosis as adaptability, activities of daily living, leadership,
well as in determining the severity of ASD and functional communication, social skills) in
prognosis for a child. addition to emotional and behavioral symptoms.
One of the most commonly used measures of The BASC-2 also contains a Developmental
adaptive skills is the Vineland Adaptive Behavior Social Disorders content scale that evaluates the
Scales-Second Edition (VABS-II; Sparrow, presence of behaviors commonly associated with
Cicchetti, & Balla, 2005). The VABS-II relies on pervasive developmental disorders (e.g., poor
informant report to assess communication (i.e., socialization, self-stimulation). This scale in par-
receptive, expressive, written communications), ticular can be useful in differentiating children
social interactions (i.e., personal, domestic, com- with ASD from those without.
munity), daily living skills (i.e., interpersonal Researchers studying the validity of the
play, relationship play, leisure time), motor skills BASC-2 have shown that compared to typically
(i.e., gross motor skills, fine motor skills), and developing peers and children with general
maladaptive behaviors (i.e., internalizing and developmental disabilities, young children with
externalizing problem behaviors). Items are rated ASD exhibit more clinical symptoms in domains
with either a score of 2 “usually,” 1 “sometimes,” like hyperactivity, attention problems, anxiety,
or 0 “never.” Scores can be converted into per- depression, atypicality, and withdrawal. Further,
centile ranks, stanines, adaptive levels, and age children with ASD have been found to exhibit
equivalents. The VABS-II was normed for use greater impairments in nearly all of the adaptive
with individuals from birth through 18 years old. functioning domains (Goldin, Matson, Konst, &
Inter-rater reliability has been found to range Adams, 2014; Volker et al., 2010). These findings
from the low 0.70s to high 0.80s, whereas test- highlight the ability of the measure to be utilized
retest reliability ranges from 0.80s to 0.90s for differential diagnosis when the child’s symp-
(Sparrow, 2011). A significant strength of the toms and behaviors are complex. Internal consis-
measure is the number of adaptive areas it cap- tency of the BASC-2 is adequate ranging from
tures. Clinicians can get a comprehensive look at 0.67 to 0.97 and the test-retest reliability is good,
relative strengths and weaknesses of the child, ranging from 0.56 to 0.99 (Reynolds &
which may be used to rule out certain disorders Kamphaus, 2004).
or highlight areas that require further assessment
through observational measures, diagnostic inter-
views, and/or rating scales. Chapter Conclusions and Future
Finally, assessing for psychopathologies in Directions
young children can be beneficial in achieving an
accurate diagnosis and planning for intervention. ASD is a very complex, heterogeneous disorder
The Behavior Assessment System for Children, with substantial variability in symptom onset,
Second Edition (BASC-2; Reynolds & Kamphaus, presentation, and prognosis across those affected.
2004) is a parent rating scale designed to evaluate However, diagnosis of ASD at 2 years of age is
for the presence of psychopathology in individu- possible, reliable, and stable (Lord, 1995;
als 2–25 years of age. Information is gathered on Wetherby et al., 2007; Zwaigenbaum et al.,
how often behaviors and symptoms occur on a 2007). As discussed, a variety of symptoms
four-point rating scale ranging from never to across multiple domains of development are
always. Responses are scored and results are pro- apparent early in life. Researchers have shown
vided regarding several clinical aspects of behav- that within the first 2 years of life, several social,
ior including aggression, conduct problems, communication, and restricted and repetitive
anxiety, depression, somatization, attention prob- behaviors and symptoms can reliably differenti-
lems, hyperactivity, atypicality, and withdrawal. ate infants and toddlers with ASD from typically
The measure serves a dual function as it is developing children and infants and toddlers
designed to assess for adaptive functioning (i.e., with other developmental difficulties (e.g., IDDs,
170 P.E. Cervantes et al.

language delays; De Giacomo & Fombonne, Rogers, 2009). ASD screening in the general
1998; Goin-Kochel et al., 2006; Landa & pediatric setting however has been limited and it
Garrett-Mayer, 2006; Rogers, 2009; Wetherby is imperative that we identify and rectify the
et al., 2004; Zwaigenbaum et al., 2007). obstacles to implementation of universal screening
However, most children with ASD are not diag- (Zwaigenbaum, 2010). Also important is bring-
nosed until 3–4 years of age. This trend holds ing caregivers’ attention to the symptoms present
negative consequences for both the child with when a child fails a screener. This may foster a
ASD and his or her family (De Giacomo & consensus with the family and prepare the care-
Fombonne, 1998; Goin-Kochel et al., 2006; givers to consider an ASD diagnosis. It may also
Wetherby et al., 2004). Improvements in identi- help shorten the time it takes the family to seek a
fying at-risk children and encouraging them to comprehensive evaluation (De Giacomo &
pursue a comprehensive ASD assessment are Fombonne, 1998; Wetherby et al., 2007).
necessary. Currently, comprehensive ASD diag- The future of assessment for ASD may lie in
nostic processes are conducted by qualified cli- the neurobiological underpinnings of the disor-
nicians with extensive experience and training, der. Some researchers suggest that assessing
and involve a battery of assessment methods underlying developmental and biological con-
including gathering a detailed developmental structs (i.e., attentional control, executive func-
and medical history, utilizing reliable and valid tioning, orientation to social stimuli, visual
observational tools, structured interviews, and fixation, face processing) may help better iden-
rating scales, and administering measures of tify ASD in very young children (Klin & Jones,
associated constructs to aid in differential 2008; Klin, Lin, Gorrindo, Ramsay, & Jones,
diagnosis. 2009; Ozonoff et al., 2008; Rogers, 2009;
Though our understanding of ASD emergence Zwaigenbaum et al., 2007). These constructs
and available methods to assess ASD in infant show promise in serving as biological markers
and toddlerhood has developed tremendously in that predict the presence of ASD before behav-
the past decade, it is essential that we continue to ioral symptoms arise (Ozonoff et al., 2008).
make strides to improve early diagnosis. This However, this line of research requires further
must begin with enhancing our ability to identify development, including evidence of sensitivity
infants and toddlers in need of more comprehen- and specificity. Identifying neurobiological
sive ASD evaluation processes. The American markers for ASD, such as potential endopheno-
Academy of Pediatrics recommends utilizing a types or brain abnormalities, remains difficult
multilevel screening process beginning with uni- due to the heterogeneity of the disorder and com-
versal ASD screening for all children aged 18–24 plex etiology involved (Volkmar et al., 2009).
months. In order to pursue this recommendation, Evidence-based treatment for ASD in young
we should make use of primary care profession- children is available and has been shown to
als who see young children frequently and regu- improve language, social, and cognitive skills
larly for checkups (De Giacomo & Fombonne, more when provided before 4 years old (De
1998; Ozonoff et al., 2008; Wetherby et al., 2007; Giacomo & Fombonne, 1998; Wetherby et al.,
Zwaigenbaum, 2010). Those children scoring in 2004). This highlights the importance of early
the at-risk range on these screeners should be diagnosis. To aid in early enrollment, some
referred for a more comprehensive evaluation researchers have posed that young children
(Ozonoff et al., 2008; Zwaigenbaum, 2010). should be referred for early intervention services
Because of the variability in ASD symptom at the time of suspicion of ASD rather than wait-
emergence and onset, it is essential that screen- ing for an official diagnosis. Further, while there
ings occur repeatedly through young childhood is extensive evidence for the effectiveness of
until 3 years of age. This would help identify early intensive behavioral intervention beginning
those children experiencing later onset or milder in toddlerhood, research on and development of
presentations of ASD (Ozonoff et al., 2008; interventions appropriate for infants is needed
9 Diagnosing ASD in Very Early Childhood 171

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and other pervasive developmental disorders: an
identification and treatment of ASD in young
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