585310

research-article2015
AUT0010.1177/1362361315585310AutismFischbach et al.

Original Article
Autism

Is there concordance in attitudes and 2016, Vol. 20(3) 353363

The Author(s) 2015
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DOI: 10.1177/1362361315585310

about autism spectrum disorder? aut.sagepub.com

Ruth L Fischbach1,2, Mark J Harris1, Michelle S Ballan3,

Gerald D Fischbach1,4 and Bruce G Link2,5

Abstract
There is no reported investigation comparing concordance in attitudes and beliefs about autism spectrum disorder
between parents of children with autism spectrum disorder and scientists who research autism spectrum disorder. To
investigate the level of concordance between these groups on causes of autism, priorities of research, perceived stigma,
and disclosure of genetic test results, telephone interviews were conducted. Parents (n=502) were recruited from the
Simons Simplex Collection, and research scientists (n=60) were recruited from investigators funded by the Simons
Foundation. Response rates were notable (parents 91%, scientists 80%). Parents and scientists differed significantly
regarding beliefs of the likely major cause of autism (p=0.007) and priorities for further research (p<0.001). Scientists
believed in genetic causes while many parents believed in vaccines as the cause of autism. Parents (37%) were more likely
to hesitate vaccinating their child (p<0.001). In contrast, there was strong concordance regarding extent of perceived
stigma (95% vs 92%) and preferences for disclosure of genetic test results, including incidental findings. While scientists
believed communication important, paradoxically fewer than half reported it important for scientists to communicate
directly with parents. Better communication between parents and scientists should improve mutual understanding and
ultimately the health and well-being of children with autism spectrum disorder and their families.

Keywords
autism spectrum disorder, concordance, communication, genetic testing, incidental findings, stigma, vaccines

Introduction
Understanding the nature and extent of concordance in
attitudes and beliefs between parents and scientists is vital
for an effective medical and public health response. It is
likely that differing experiences, priorities, and sources of
information influencing these two groups could lead to
lack of concordance in attitudes and beliefs. The diagnosis
of autism spectrum disorder (ASD) presents unique chal-
lenges for agreement between parents and scientists.
Controversies over causes and treatments, for example,
have been divisive in this community. Distrust of medical
and scientific opinions can lead to adoption of untested
complementary and alternative treatments (Harrington
etal., 2006b; Oliver and Wood, 2014). In addition, the
rapid pace of scientific research on ASD runs the risk of
further fragmenting these groups, causing discrepancies in
knowledge and rifts in communication.
It is therefore important to learn how both parents of
children with ASD and scientists who research ASD
respond to basic questions such as the following: What are
believed causes of ASD? What priorities should inform
future research efforts? Clarification of such issues is cru-
cial to promote the ASD communitys cooperative efforts
with scientists, to the benefit of both.
We implemented a study to directly compare attitudes
and beliefs of parents and scientists regarding ASD. This
1Columbia University College of Physicians and Surgeons, USA
2Columbia University Mailman School of Public Health, USA
3Columbia University School of Social Work, USA
4Simons Foundation, USA
5New York State Psychiatric Institute, USA
Corresponding author:
Ruth L Fischbach, Center for Bioethics, Department of Psychiatry,
Columbia University College of Physicians and Surgeons, 630 West
168th Street, Box 161, New York, NY 10032, USA.
Email: rf416@columbia.edu
354 Autism 20(3)
empirical investigation is novel, as no comparable studies
of concordance between parents and scientists could be
found. This study offers critical information concerning
whether and to what extent a gap exists between these two
groups and on what dimensions. Highlighting similarities
and differences in parents and scientists perspectives can
promote productive dialogue that ultimately can lead to
mutually agreeable perspectives and goals for genetic,
molecular, and clinical research on ASD.
Methods
Survey design and implementation
In collaboration with the University of Massachusetts
Boston Center for Survey Research (CSR), we designed a
72-item survey based on a comprehensive literature review
and six focus groups: three groups with parents of a child
with ASD and three with young adults with ASD. To
develop the computer-assisted telephone interview (CATI),
we employed cognitive interviews and pretests. Cognitive
interviews were completed with 10 parents with a child
with ASD. The overarching goal of cognitive interviews is
to improve the questions proposed for the survey instru-
ments. Specifically, through a series of probes, cognitive
interviews allow the researchers to learn about partici-
pants comprehension of candidate survey items; identify
any unclear concepts, questions, or terms; and learn how to
make the questionnaire flow more smoothly for the partici-
pant. Pretests with 20 parents of children with ASD were
essential to ensure that the flow of questions, skip-patterns,
and response categories appeared correctly on the com-
puter screen as the interviewer was posing the questions.
Using the CATI, the interviewer was able to type the par-
ticipants responses directly into the data file.
After oral informed consent, parents and scientists were
asked identical questions about the causes of ASD, research
priorities, preferences about the results of genetic research,
and perceptions of stigma. Scientists were asked additional
questions about discussing their research with parents as
well as incentives and perceived barriers to communicating
research results. Compensation for participation was
US$25 for parents and US$100 for scientists. CSR con-
ducted all phases of data collection and entry. Approval was
obtained from Columbia University and University of
Massachusetts Institutional Review Boards (IRBs).
Sample identification and selection
The Simons Foundation Autism Research Initiative
(SFARI) was formed to discover the cause of autism,
investigate neural mechanisms, and develop therapeutic
approaches. A total of 12 university clinics in the United
States and Canada systematically collected data from
Simplex families, that is, families in which one child has
ASD but neither parents nor siblings are on the autism
spectrum. The proband was evaluated with the Autism
Diagnostic Observation Schedule (ADOS), Autism
Diagnostic InterviewRevised (ADI-R), and more than 20
other instruments (Lord etal., 2000, 2001); families were
evaluated by research-qualified clinicians; and all mem-
bers were extensively genotyped and phenotyped. The
Simons Simplex Collection (SSC) is described as a rigor-
ously characterized data collection created to promote the
discovery of rare de novo genetic variants that increase the
risk of developing ASD (Fischbach and Lord, 2010).
The SSC sites invited a total of 2756 families to join
SSC@IAN (the Interactive Autism Network (n.d.) hired
by SFARI to manage the SSC data). A total of 63%
accepted and sent the familys information to IAN, 7%
declined, and 30% were lost to follow-up. Of the 1736
who agreed to have their information sent to IAN, a total
of 1460 (84%) ultimately completed enrollment and are
officially SSC@IAN families. Parent participants were
recruited from this well-defined population. As our goal
was to have a sample of 500 SSC parents, 554 (the primary
caregiver was chosen) were randomly selected to partici-
pate in the study by the SSC@IAN. Of the 554 parents, 41
were unreachable, 2 were ineligible, and only 9 refused;
502 completed the interview (91% response rate). The
sample included parents from all 12 SFARI sites.
Data were gathered using a CATI. The Interviewers,
speaking into the telephone, posed the questions as they
appeared on the computer screen and the participants
responses were then typed directly into the data file.
Scientist participants were recruited by CSR from the
140 research scientists funded by SFARI to investigate the
causes and mechanisms of ASD. Principal investigators
were intentionally oversampled to ensure inclusion of sci-
entists with significant ASD research experience. Of 75
randomly selected, 14 could not be contacted, and only 1
refused; 60 completed the interview (80% response rate).
Scientists represented a wide range of research foci: gene
discovery (36% of sample), molecular and cellular mecha-
nisms (33%), cognition and behavior (17%), and neural
circuits and systems neuroscience (14%).
See Table 1 for complete demographics of both
samples.
Data analysis
Data were collected, cleaned, and coded by CSR and
entered into SPSS (SPSS Statistics Grad Pack 22.0) for
analysis. The missing percentages across the parent and
scientist surveys were 3.9% and 4.4%, respectively.
Differences between parents and scientists responses
were assessed via chi-square tests. The chi-square test of
independence was used as we had nominal level variables.
The chi-square test determines whether there is a significant
difference between the expected and observed frequencies
in one or more categories and whether this difference
between the expected and observed value is due to sampling
Fischbach et al. 355

Table 1. Demographics of survey participants.

Parents (n=502) Scientists (n=60)

Age, median (IQR) 43 (3947) Age, median (IQR) 37 (3343)
Sex, n (%) Sex, n (%)
Male 26 (5) Male 38 (63)
Female 476 (95) Female 22 (37)
Race, n (%) Race, n (%)
White 409 (82) White 42 (70)
Hispanic or Latino 39 (7.8) Hispanic or Latino 4 (6.7)
Asian 24 (4.8) Asian 16 (26)
Black/not Hispanic 19 (3.8) Black/not Hispanic 0 (0)
Native American 8 (1.6) Native American 1 (2)
Native Hawaiian or Pacific Islander 3 (0.6) Native Hawaiian or Pacific Islander 0 (0)
Education, n (%) Years working in the field, n (%)
Less than or equal to 8th grade 1 (0.2) Less than 1year 2 (3.3)
Some high school 1 (0.2) 12years 10 (17)
High-school graduate 32 (6.4) 35years 17 (29)
Some college 112 (22) Greater than 5years 30 (50)
College graduate 192 (38)
More than college 164 (33)
Living with spouse or partner 462 (92) Principal investigator status, n (%) 22 (37)
Diagnosis of child (DSM-IV), n (%) Rank, n (%)
Autism 262 (52) Faculty 35 (58)
Pervasive developmental disorder, 137 (27) Post-doc 18 (30)
not otherwise specified (PDD-NOS) Fellow 2 (3)
Aspergers 86 (17) Other 5 (8)
Autism spectrum disorder (ASD) 6 (1.2)
High-functioning 5 (1.0)
Other 5 (1.0)
Missing 1 (0.2)
Area of main research focus, n (%)
Gene discovery 21 (36)
Molecular and cellular mechanisms 19 (32)
Cognition and behavior 10 (17)
Neural circuits and systems 8 (13)
Interactions with individuals with ASD, n (%)
Contact because of work 26
In a clinical setting 13
Contact outside of work 24
A lot 1 (4)
Some 8 (33)
Very little 15 (63)
Has a family member with ASD 8/60 (13)
Child 3 (5)
Sibling 1 (2)
Other 4 (6)

IQR: interquartile range; DSM-IV: Diagnostic and Statistical Manual of Mental Disorders (4th ed.).

variation or a statistically significant difference accepting a
5% error rate (p<0.05).
Results
Beliefs about causes and research priorities
Parents and scientists differed significantly on what is
most likely the major cause of autism (2=36.77, df=13,
p <0.001; Table 2). Genetics was considered the major
cause of autism by 95% of scientists but by only 55% of
parents. A significant percentage of parents (13%) believed
vaccines were the most likely cause of autism, whereas no
scientist reported vaccines as the major cause.
Small numbers (2% or fewer) of parents reported what
they believed were other major causes of autism including
prenatal and gestational events, interaction of environment
 356

Table 2. Survey questions on causes and research priorities asked to both parents (n=502) and scientists (n=60).a

Question Parents Scientists 2, df p

Causes
What is most likely to be the major cause of autism? 36.77, 13 <0.001***
Genetics 55% 95%
Vaccines 13% 0%
Toxic exposures in the environment 9% 3%
The parents age 3% 0%
Dont know 7% 0%
Other causes 13%b 2%c
Yes No Unsure Yes No Unsure
Would you have any hesitation about having a child vaccinated? 37% 61% 2% 3% 97% 0% 30.60, 2 <0.001***
Research priorities
A lot Some None A lot Some None
How much research should be done on _____ as a possible cause
of autism?
Genetics 71% 28% 1% 97% 3% 0% 18.74, 2 <0.001***
Toxic exposure in the environment 57% 38% 5% 20% 78% 2% 35.63, 2 <0.001***
Vaccines 30% 45% 25% 2% 32% 66% 48.82, 2 <0.001***
Medicines the mother may have taken while she was pregnant 25% 60% 15% 25% 75% 0% 10.54, 2 0.005**
The parents age 16% 59% 25% 23% 70% 7% 10.92, 2 0.004**
Cause Treatment Cure Prevention Cause Treatment Cure Prevention
Which of the following should be the most important goal of 21% 40% 17% 22% 38% 46% 4% 13% 14.66, 3 0.002**
autism research?
a*p<0.05; **p<0.01; ***p<0.001. Percentages are rounded to the nearest whole number and therefore may not sum to exactly 100.
bOther causes mentioned by 2% or less of parents: interaction of environment and genetics; prenatal and gestational events; immune systems; medicines the mother may have taken while pregnant or the
child took when young; childs diet; prematurity.
cOther causes mentioned by 2% of scientists included idiopathic autism and maternal vitamin D deficiency.
Autism 20(3)
Fischbach et al. 357
and genetics, immune systems, medicines the mother may
have taken while pregnant or the child had taken when
young, prematurity, or the childs diet. None of the scien-
tists cited any of these believed causes.
Emphasis on genetics was corroborated by asking par-
ticipants how much research should be done on genetics as
a possible cause of autism. Again, while most parents
(71%) believed genetic research important, scientists were
almost united in favor (97%; 2=18.74, df=2, p<0.001), viduals with autism (90% vs 88%), on decreasing stigma
irrespective of their individual research area of focus.
Conversely, whereas 152 parents (30%) felt that vaccines
deserved a lot of research, only one scientist held that
preference.
Parents focus on vaccines was also shown as a clear
discrepancy related to their concerns about vaccinations:
37% of parents reported they would hesitate to have their
child vaccinated, whereas only 3% of scientists would
hesitate (2=30.60, df=2, p<0.001). to understand the experience and concerns of parents.
Parents and scientists also differed on the most impor-
tant goal of research (2=36.10, df=18, p=0.002). something parents would be interested in learning about,
Parents were split among treatment (40%), causes (21%),
and prevention (22%), while fewer (17%) opted for cure.
Scientists research goals were primarily treatment (43%)
or causes (35%) with fewer opting for prevention (12%) or
cure (3%).
Preferences about genetic testing
A very high percentage of parents (96%) reported they
would want to know whether a genetic cause (risk factor)
was identified in their child. Scientists uniformly (100%)
endorsed that opinion. The desire to know also applied to
incidental findings (findings concerning an individual
research participant that have potential health or reproduc-
tive importance and are discovered in the course of con-
ducting research but are beyond the aims of the study
(Wolf etal., 2008)). Agreement in desire to know was seen
whether applicable to treatable (90% parents vs 87%
scientists) or less so for untreatable (72% parents vs 65%
scientists) diseases. Concordance was also shown with
respect to wanting to know whether a genetic cause came
from them individually (93% vs 92%) and whether they
would feel more concerned about passing the gene on to
future generations (70% vs 69%). When asked whether
this discovery would make them feel more or less respon-
sible for their childs autism, fewer parents than scientists
were likely to feel more responsible (24% vs 39%;
2=10.78, df=2, p=0.004). Our findings represent the first comparison of reported
Stigma
In this study, stigma was defined for participants as when
individuals are made to feel inferior, shamed, isolated,
or their self-image is damaged. There was remarkable
concordance between parents and scientists perception
that individuals with ASD are stigmatized (95% vs 93%;
Table 3). Both groups also reported that if a genetic cause
were found, it would not change the level of stigma (70%
vs 56%), but some (especially scientists) reported that it
might reduce the level of stigma experienced (26% par-
ents vs 41% scientists).
There was also concordance that the media overall has
had a positive effect on the publics attitudes toward indi-
of autism (61% vs 69%), and on increasing the publics
understanding of challenges that parents face (76% vs
85%).
Attitudes of scientists about communication
A subset of questions was asked only of scientists (Table 4).
Of them, 70% reported it is very important for scientists
While almost all scientists (98%) thought their research is
fewer than half (48%) reported it was very important for
parents to understand the scientific research or for scientists
and parents to communicate directly (43%). In evaluating
the effectiveness of the media, a large proportion of the sci-
entists (73%) considered that the media was doing a fair
to poor job of explaining scientific or medical research
findings; fewer reported the media did a very good or
good job (27%).
Many scientists (68%) reported they would feel very
comfortable discussing their own work with parents and
would be interested in being a resource by speaking with
parents in small groups (85%), writing articles in lay pub-
lications (85%), and speaking at ASD conferences attended
by parents (80%).
Significant barriers to communication cited by scien-
tists were not being offered opportunities to talk to par-
ents (50%) and not having the time to talk to parents
(48%). Scientists did not consider need for payment (72%)
or being comfortable (42%) as barriers to speaking with
parents.
None of these findings varied significantly with status
as a principal investigator or by the specific research
field they worked in (e.g. gene discovery or cognition and
behavior).
Discussion
attitudes and beliefs of parents of children on the autism
spectrum with those of scientists conducting ASD-related
research. While our results identify important areas in
which lack of concordance exists (e.g. perceived causes of
ASD), more striking are topics on which the two groups
are concordant (e.g. genetic testing, perceived level of
stigma).
358 Autism 20(3)

Table 3. Survey questions on genetic testing and stigma asked to both parents (n=502) and scientists (n=60).a

Parents Scientists 2, df p
Genetic testing
Yes No Unsure Yes No Unsure
Should parents receive the results of 97% 4% 0%
genetic tests that have been done on their
child?
If an incidental finding indicated a risk for 90% 1% 9% 87% 2% 12% 0.59, 2 0.74
a treatable disease, would you want to
know?
What about for a disease that has no cure 72% 6% 22% 65% 5% 30% 2.10, 2 0.35
(is untreatable)?
If a genetic cause was identified in your 96% 4% 100% 0% 2.35, 1 0.13
child, would you want to know?
Would you want to know if the gene came 93% 7% 92% 8% 0.09, 1 0.77
from you or the other parent?
More Less Same More Less Same
Would this discovery make you feel more 24% 1% 75% 39% 5% 56% 10.98, 2 0.004**
or less responsible?
Would you feel more or less concerned 70% 2% 28% 69% 5% 26% 2.79, 2 0.25
about passing autism on to future
generations?
Stigma
Yes No Yes No
Do you think individuals with autism are 95% 5% 92 7% 0.26, 1 0.61
stigmatized?
More Less Same Unsure More Less Same Unsure
If a genetic cause for autism was found, 5% 26% 70% 0% 3% 41% 56% 0% 5.84, 2 0.054
how would that affect the stigma?
Better Worse Same Better Worse Same
How has media attention affected the
publics attitudes toward _____?
Individuals with autism 90% 4% 6% 88% 5% 7% 0.20, 2 0.91
The publics understanding of challenges 76% 4% 20% 85% 2% 14% 2.17, 2 0.34
parents face
More Less Same More Less Same
Stigma of autism 10% 61% 30% 11% 69% 20% 2.16, 2 0.34
a*p<0.05; **p<0.01; ***p<0.001. Percentages are rounded to the nearest whole number and therefore may not sum to exactly 100.

Causes of ASD
Genetics was the most common major cause of autism
reported by both parents and scientists. However, while
95% of scientists cited genetics, only 55% of parents
ranked genetic factors as the major cause of autism. Of the
parents, 13% ranked vaccines as the second most fre-
quently cited major cause of autism, whereas not one sci-
entist cited vaccines as a cause. Selkirk etal. (2009) found
a similar trend in parents, where genetics and vaccines
were most commonly cited. While most scientists agree
that genes are one of the risk factors that can make a per-
son more likely to develop ASD (Centers for Disease
Control and Prevention (CDC) National Center on Birth
Defects and Developmental Disabilities, 2014), there is
also understanding that there are other likely risk factors
that could require more research (e.g. valproic acid;
Christensen etal., 2013), thalidomide taken during preg-
nancy (Strmland etal., 1994), and increased parents age
(Durkin etal., 2008).
We found that a significant number of parents (37%)
would hesitate to vaccinate their children. The pervasive
belief that vaccines cause autism stems from Wakefield
etal.s (1998) now-retracted paper. Media and celebrity
spokespeople subsequently have bolstered such a view
despite evidence to the contrary (Offit, 2008, 2009, 2011).
On a population level, such reluctance has led to the resur-
gence of once-eliminated preventable illnesses such as
mumps and measles. From 1 January through 23 May
2014, as an example, a total of 288 confirmed measles
cases were reported to CDC, surpassing the highest
reported yearly total of measles cases since elimination.
Fischbach et al. 359

Table 4. Communication questions asked of scientists (n=60).a

Question Scientists
Very Somewhat Not at all
How comfortable are you discussing your own scientific work with parents? 68% 32% 0%
How important is it for scientists to understand the experience and concerns of parents? 70% 27% 3%
How important is it for parents to understand the scientific research? 48% 52% 0%
How important is it for scientists and parents to communicate directly? 43% 55% 2%
Very good Good Fair Poor
How well does the media explain scientific or medical research findings? 5% 22% 58% 15%
Yes No
Have you ever talked to parents about your research? 75% 25%
(If no), have you ever been offered the opportunity to talk about your research? 0% 100%
Have you ever written about your research in lay publications? 36% 64%
Have you ever been interviewed about your research? 27% 73%
Do you think your research is something parents would be interested in learning about? 98% 2%
Would you be interested in being a resource _____?
By speaking with parents in small groups 85% 15%
Through writing articles in publications that parents are likely to read 85% 15%
By speaking at autism conferences that parents attend 80% 20%
Barriers
How big of a barrier to communication is each of the following scenarios? Big Small Not at all
Scientists arent offered opportunities to talk to parents. 50% 40% 10%
Most scientists dont have the time to talk to parents. 48% 38% 13%
Most scientists arent interested in talking directly to parents. 28% 52% 20%
The research most scientists do isnt interesting to parents. 22% 58% 20%
Most scientists are not comfortable with public speaking. 20% 38% 42%
Most scientists want to get paid when they talk about their research. 10% 18% 72%
aPercentages are rounded to the nearest whole number and thus may not sum to exactly 100.

An unwillingness to vaccinate is now recognized as a
nationwide problem, with 85% of those unvaccinated hav-
ing declined for religious, philosophical, or personal
objections (Gastaaduy etal., 2014).
The conflicting stances on causes could have profound
effects on parents interactions with scientists and medical
professionals. Research suggests that a parents belief
about causes can be influenced by the relative timing of
the diagnosis; symptoms occurring in older children are
more likely to lead to the perception of environmental or
vaccine-related causes (Davidovitch etal., 2000) than
symptoms occurring shortly after birth. This perception
can, in turn, also lead to less parental confidence in a phy-
sicians abilities and an increased likelihood that a parent
will pursue alternative medicines (Harrington etal.,
2006a). This literature underscores the importance not
only of early diagnosis but also of clear communication
regarding causes and risk factors because delays in diagno-
sis and perceived flaws in care may amplify distrust by
parents toward physicians and hinder future management
decisions.
Parents and scientists shared their preference that the
most important goal of autism research should be finding
an effective treatment, and both felt finding a cure for ASD
was the least important goal. It is not surprising that find-
ing a cure for autism is not a popular goal for many parents
since for many in the autism community who are members
of various disability rights organizations, they view autism
as an aspect of diversity or a way of life rather than as
a disease (Harmon, 2004; Woodford, 2006). This view of
autism advocates acceptance over search for a cure.
Scientists appear to focus on identifying risk factors and
effective therapeutics, perhaps seeing a cure as currently
out of reach.
Role of genetic testing
Determining the genetic basis of ASD is an important
research effort, and parents and scientists showed concord-
ance regarding the role of genetic testing in research set-
tings. The preference for wanting to know whether a
genetic cause was identified in their child, even if they
were responsible for the genetic mutation, was almost uni-
versal within the two groups. This trend is supported by
research that parents look favorably upon genetic informa-
tion and that it helps them to be prepared for the future
(Baret and Godard, 2011; Bollinger etal., 2014; Chen
etal., 2013).
360 Autism 20(3)
While the great majority of both groups indicated they
would not feel personally more responsible for the genetic
mutation, more than two-thirds appeared increasingly con-
cerned about passing autism on to future generations.
Farrugia (2009) outlined how the evolution of autism etiol-
ogy has influenced stereotypes associated with the disor-
der over time. While the general understanding of ASD
etiology may have shifted from psychoanalytical to cogni-
tive or genetic explanations, many of the associated stereo-
types linger (e.g. cold and distant parenting, specific types
of autistic intelligence, and distancing from siblings
because of the potential heritability of autism).
Concordance on disclosure of incidental findings, even
for an untreatable disease, is notable because traditionally
scientists and physicians have been reluctant to provide
results of genetic testing. They fear misinterpretation of
uncertain or unknown significance, undue stress, and inap-
propriate irreversible proactive measures, although such
concerns are not supported by empirical data (Baret and
Godard, 2011; Green et al., 2013; Miller etal., 2010;
Trottier etal., 2013).
Our documented concordance between parents and
scientists is another example of the paradigm shift in pref-
erences for disclosure of genetic information (Cassa etal.,
2012; Kohane and Taylor, 2010; Ramoni etal., 2013). As
new genetic tests are adopted and costs for testing are low-
ered, such tests will become the standard of care. The role
of genetic counselors, research scientists, and clinicians
will be even more crucial (Selkirk etal., 2009). Concerns
about privacy and confidentiality of genetic information
(Marchant and Robert, 2009) will necessitate careful coun-
seling and management (McMahon etal., 2006). Both par-
ents and scientists require compatible understanding of the
power and limitations of genetic testing.
Stigma
The stigma of having an ASD is almost universally recog-
nized by both parents and scientists. The experience of
stigma can be extremely damaging to the personal identity
and well-being of the individual with an ASD and, by exten-
sion, his or her parents (Milai-Vidojevi etal., 2014).
Erving Goffmans (1964) concept of stigma portends the
idea that families of those with an ASD will be subject to the
same spoiled social identity as their children. Link and
Phelan (2001), extending Goffmans model, describe how
the components of stigma unfoldlabeling, stereotyping,
separation, status loss, and discrimination (p. 367). They
stress that for stigmatization to occur, power must be exer-
cised (Link and Phelan, 2001: 367). It remains important,
therefore, to help parents and children find ways to lessen
the damage resulting from perceived stigma.
Parents are often shaken and upset when their children
receive the diagnosis of an ASD, and consequently their
acute inability to cope can not only risk psychological
problems and family dysfunction but can also affect deci-
sions about interventions and treatment (Gau etal., 2012;
Hebert, 2014; Mansell and Morris, 2004). Imparting clear
and factual information about ASD at the time of diagnosis
can not only allay parents concerns and correct stereo-
types, but developing a medical or genetic conceptualiza-
tion of ASD can help buffer against stigma (Farrugia,
2009; Gill and Liamputtong, 2013; Phelan, 2002). Parents
who have knowledge and understanding of ASD are likely
more resilient and face stigma more easily (King etal.,
2009), especially as these issues associated with stigma are
heavily influenced by genetic discoveries.
It is reassuring that both parents and scientists believe
that the level of stigma is likely to decrease. Nonetheless,
media portrayals of ASD must improve further. First,
media portrayals usually focus on high-functioning indi-
viduals on the spectrum. Rarely are those with serious dis-
abilities depicted. Furthermore, current representations
tend to be heavily biased and portray the dual stereotype
of autism as either dangerous and uncontrollable or
unloved and poorly treated (Jones and Harwood, 2009:
5). Parents and scientists should work together to improve
the representation of ASD in the media so that the public
has a more realistic view of ASD.
Parentscientist communication
The data indicate that scientists are an untapped resource
for parents, yet a paradox exists. While many scientists
report willingness and ability to share scientific findings
with parents and learn about parents experience with
ASD, others report it is not very important for parents to
understand scientific research or for scientists to commu-
nicate directly with parents. Additionally, there appears to
be a mismatch between what some scientists say and what
parents understand because of the way that often scientists
may explain their work, using jargon and scientific termi-
nology. Reports suggest many scientists should be encour-
aged to communicate their research findings more readily,
using clear language at a level that parents can understand
(Doak etal., 2004; Nielsen-Bohlman etal., 2004; Skloot,
2010).
The identified barriers seem surmountable. Facilitating
opportunities for candid discussion about experiences and
goals will improve mutual understanding and connections
between these two groups, especially in light of the under-
whelming performance of the media in explaining research
findings (Overbye, 2014). Patientphysician communica-
tion literature can be used to guide scientists to understand
perspectives and priorities of parents: respond sensitively
and responsively to parents beliefs, and engage families
in the change process (King etal., 2009: 61). Because
every child and family is different, Hebert (2014) advises
describing the philosophy of the research with
families so that they can understand the implications of
Fischbach et al. 361
treatment decisions and make choices that are consistent
with their perceptions of parenting needs.
Through improved communication, scientists can
become a visible and valuable resource for parents since
they are not seen as useful otherwise (Mansell and
Morris, 2004). Better cooperation between parents, scien-
tists, and clinicians will improve practice, education, and
ultimately the health of children with ASD.
Limitations and next steps
Despite the 502 parents coming from 34 states and 3
Canadian provinces, they were found to be relatively
homogeneous: highly educated, predominantly White, and
their children with ASD had higher average intelligence
quotients (IQs) than the general population of children
with ASD. This may limit the external validity of the find-
ings. In addition, the parent group may also not be repre-
sentative of parents as a whole, given that they were
recruited from the SSC study. Indeed, these parents may
have been more informed about scientific research find-
ings due to their participation (and associated implied
interest) in research. They may also be more likely to
believe in genetic contributions to ASD, given their par-
ticipation in a genetic study. Yet the diversity of their
responses, especially regarding vaccines, suggests that
there is interesting variation in their beliefs and attitudes.
One also may suspect bias in the responses of the scien-
tists favoring genetic research given that they are all
funded by SFARI. This is likely not significant, however.
Autism is known to be heritable (Folstein and Rosen-
Sheidley, 2001; Freitag, 2007), and given the diversity rep-
resented in the varied areas of main research focus (only
36% are focused on gene discovery), years working in the
field, principal investigator status, academic rank, and per-
sonal contact and experience with individuals with ASD,
bias is probably limited. Additional studies in more diverse
populations, including physicians and other healthcare
professionals, are needed.
Our work seeks to fill a large gap in which there is little
information at all. Obtaining strictly representative sam-
ples of scientists and parents would be extremely difficult
and very expensive. While our samples deviate from
strictly random samples, we chose them because they
allow insights that go substantially beyond conclusions
based on much smaller and more select samples of parents
andto our knowledgeno samples of scientists at all.
We are able to fill in with evidence what might otherwise
be dominated by hunches and conjectures.
Conclusion
This study explored concordance of attitudes and beliefs of
parents of children with ASD and scientists conducting
ASD research. Response rates were high suggesting
parents and scientists want to discuss these topics. While
results indicate significant discordance between parents
and scientists regarding their beliefs about causes of ASD
and research priorities, high levels of concordance on pref-
erences for disclosure of genetic test results and extent of
perceived stigma were also found. It is important to address
these areas moving forward. While there is interest of sci-
entists to discuss their work with parents, and few barriers
to communication, many reported it is not very important
for parents to understand scientific research or for scien-
tists to communicate directly with parents. This study
raised important issues that encourage further research to
learn more about the diverse views of parents and scien-
tists and the constructive ways they can learn to discuss
ASD-related issues. Better cooperation and communica-
tion between parents and scientists should improve prac-
tice, mutual understanding, and ultimately the health and
well-being of children with ASD and their families.
Acknowledgements
We would like to thank the parents and scientists for their gener-
ous participation that made this research possible. We acknowl-
edge the Simons Foundation for financial support and the Center
for Survey Research at the University of Massachusetts Boston
and Sydney Kinnear for collaboration in preparing the survey
instruments and in all empirical data collection. Dr. Fischbach had
full access to all of the data in the study and takes responsibility
for the integrity of the data and the accuracy of the data analysis.
IRB approval was obtained from the Columbia University and the
University of Massachusetts Boston IRBs. All participants pro-
vided their informed consent to take part in the telephone inter-
views. A portion of the data presented here was presented at the
American Association for Bioethics and Humanities Annual
Meeting (October 18, 2014, San Diego, CA).
Declaration of conflicting interests
The authors declare that there is no conflict of interest.
Funding
This study was supported by a grant from the Simons Foundation.
The sponsor had no role in the design and conduct of the study;
collection, management, analysis, and interpretation of the data;
preparation, review, and approval of the manuscript; and deci-
sion to submit the manuscript for publication.
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