Original Article

Addressing Sexuality in Youth with Autism Spectrum Disorders:

Current Pediatric Practices and Barriers
Laura G. Holmes, MS,* Michael B. Himle, PhD,* Kelsey K. Sewell, MS,* Paul S. Carbone, MD,
Donald S. Strassberg, PhD, ABPP,* Nancy A. Murphy, MD
ABSTRACT: Objective: Research on adolescents and young adults with autism spectrum disorders (ASDs) has
focused on promoting independence and optimizing quality of life, yet the areas of sexual development and
sexuality has been largely neglected. The American Academy of Pediatrics encourages pediatricians to address sexuality issues in youth with disabilities to foster healthy development and minimize negative consequences. However, it is unclear to what extent pediatricians address sexuality issues in this population.
Methods: Two hundred three pediatricians who regularly care for youth with ASD completed an online survey
about their experiences in providing sexuality-related care to families and youth with ASD. Results:
Respondents discussed an average of 10.9 of 26 sexuality topics with all families at least once during routine visits. Experience in caring for youth with ASD correlated positively with the number of sexuality-related
topics discussed and with self-reported comfort discussing sexuality with parents of youth with ASD. The
most common barriers to providing comprehensive sexuality-related care to youth with ASD included
logistical barriers, pediatrician and parent discomfort, lack of training, and absence of information and
materials to help pediatricians address sexuality in this population. Conclusions: Although most pediatricians acknowledged the importance of addressing sexuality-related issues with youth with ASD and their
families, several important sexuality-related topics were rarely discussed due to a variety of perceived barriers. Implications and recommendations are discussed.
(J Dev Behav Pediatr 35:172178, 2014) Index terms: autism spectrum disorder, adolescence, sexuality, puberty, prevention.

utism spectrum disorders (ASDs) affect 1 in 88

children in the United States.1 Although early detection
and intervention can improve cognitive, social, and
communicative functioning,2 symptoms and deficits
typically persist into adolescence and adulthood.3 Considerable research on adolescents and young adults with
ASD has focused on promoting independence and optimizing quality of life,4 yet the areas of sexual development and sexuality have been largely neglected,5
perhaps because youth with ASD are often regarded as
childlike and asexual6 or as lacking interest in sexual
relationships.7 However, research suggests that adolescents and young adults with ASD desire and pursue
sexual relationships and engage in a variety of sexual
behaviors typical of most youth.810
Sexuality brings important opportunities for acceptance, companionship, and interpersonal fulfillment.11
However, it also introduces risks for negative consequences, such as sexual abuse, loneliness, unwanted
From the *Department of Psychology, University of Utah, Salt Lake City, UT;
Department of Pediatrics, University of Utah School of Medicine, Salt Lake
City, UT.
Received October 2013; accepted December 2013.
The authors declare no conflict of interest.
Address for reprints: Michael B. Himle, PhD, Department of Psychology, University of Utah, Salt Lake City, UT 84112; e-mail: michael.himle@utah.edu.
Copyright 2014 Lippincott Williams & Wilkins

172 | www.jdbp.org

pregnancy, sexually transmitted infections, and inappropriate sexual behavior.10,1215 Due to cognitive
and/or social impairments, youth with ASD may be more
dependent on caregivers than typically developing youth
for guidance to understand and appropriately express
their sexuality.16,17 Pediatricians and other healthcare
providers can play a vital role in fostering healthy sexuality and minimizing negative sexual consequences by
providing information and supporting parental decisionmaking as families help youth with ASD to navigate the
challenges of adolescence and young adulthood.
The American Academy of Pediatrics Council on Children with Disabilities offers recommendations to pediatricians who care for youth with developmental disabilities
(including ASDs) during sexual development.6 In addition
to addressing issues of sexual health (e.g., the need for
modified gynecological examinations, genetic counseling),
the council recommends that pediatricians regularly discuss physical, cognitive, and psychosexual development,
noting that when sexuality is discussed routinely and
openly, conversations about such sensitive issues are easier to initiate. Additionally, pediatricians are encouraged to
promote independence in self-care and privacy, to educate
parents about how cognitive abilities affect behavior and
socialization, to monitor for signs of sexual abuse, to advocate for developmentally appropriate sexuality education, and to provide families with resources to address the
development of sexuality in their children with ASD.6
Journal of Developmental & Behavioral Pediatrics

Unfortunately, many parents of youth with ASD report that they do not receive guidance for addressing
their childs sexual development.18 For example, Ballan7
found that some parents lacked even a basic understanding about how ASD would affect physical development and were surprised when their child reached
puberty on time. In the same study, parents reported that
health care professionals were reactive rather than proactive in addressing the development of sexuality in their
child with ASD.
A number of barriers may hinder pediatricians
provision of sexuality-related care to youth with ASD.6
Within the literature on typically developing youth,
several barriers to discussing sexuality have been
identified, including pediatrician, parent, and youth
discomfort,19,20 the belief among some pediatricians
that sexuality-related care should be provided by
someone else,19 and lack of training on how to talk
to youth about sexual health.20 In a nationally representative survey of pediatricians caring for typically
developing youth, those who did not think that they
had enough training to provide sexual risk reduction
counseling were 64% less likely to have such conversations.20 Within the ASD population, several additional barriers may hinder provision of sexuality related
care. For example, acute medical and developmental
concerns may dominate clinical encounters, leaving
little time for anticipatory guidance or thoughtful discussions about sexuality.19 In addition, parents and
providers may underestimate or overestimate the abilities of youth with ASD to discuss adult topics.6 The
purpose of this study was to evaluate current practices
and identify common barriers to providing sexualityrelated care for youth with ASDs in a sample of
pediatricians who care for this population.

METHODS
Survey Development and Dissemination
Following approval by the University of Utah
Institutional Review Board, a 67-item online survey
was disseminated to pediatricians through email invitations (distributed by 29 state-level American Academy of Pediatrics [AAP] chapters and the Council on
Children with Disabilities), eNewsletters, and online
postings on AAP chapter websites. Pediatricians were
included if they indicated that they regularly provided
clinical care to children with autism spectrum disorder
(ASD). Participants consented to participate before
accessing the survey and all responses were collected
anonymously.
Survey content was based on published AAP recommendations for addressing sexual development6 and input from experts who regularly provide sexuality-related
care to youth with disabilities. We also included discussion topics and barriers identified in the literature on
pediatrician sexual health counseling with typically developing adolescents and their families.20,21 The survey
Vol. 35, No. 3, April 2014

(available from the corresponding author) included 3

sections. The first section queried participant demographics, information about medical practice, experience treating children and adolescents with ASD (using
a 5-point Likert-type scale, not at all to extremely),
and professional training in ASD and sexuality. The second section asked participants to indicate the extent to
which they address various sexuality-related topics when
providing care to children with ASD using a 4-point
Likert-type scale: 1 5 no (do not address the topic as
part of my practice), 2 5 as indicated (address the
topic only when indicated, such as when a problem is
noted during examination or parents raise the topic as an
issue), 3 5 at age (topic is addressed with every family
when child reaches a certain age, but is not an ongoing
topic unless indicated), 4 5 ongoing (topic is one of
ongoing, regular discussion with all families). Although
the AAP recommends that pediatricians address
sexuality-related topics on an ongoing basis, we recognized that not all topics included in the survey would
need to be discussed regularly due to the nature of the
question or patient characteristics. To account for this,
we computed the number of pediatricians who endorsed
discussing each topic with all families at least once, defined as any response indicating that the topic is discussed at age or ongoing. The second section of the
survey asked pediatricians to rate, on a 5-point Likerttype scale, their overall level of comfort discussing
sexuality with parents of youth with ASD (1 5 not at
all to 5 5 extremely), comfort discussing sexuality
directly with youth with ASD (1 5 not at all to 5 5
extremely), how well their medical training had prepared them to provide sexuality-related care to youth
with ASD (1 5 not at all to 5 5 very well), and
whether providing accurate information about physical
development and sexual behavior was an important part
of their role (1 5 very much disagree to 5 5 very
much agree).
The final section of the survey explored perceived
barriers to providing sexuality-related care for families
and children with ASD. Participants were asked to indicate the degree to which each of several potential
barriers inhibited more frequent or in-depth conversation about sexuality on a 5-point Likert-type scale ranging
from 1 5 not at all to 5 5 extreme.

Data Analysis
Due to zero-inflated distribution of the outcome variable, Poisson regression was used to examine whether
demographic and practice variables predicted the number of topics addressed by pediatricians at least once.
Initial analyses revealed overdispersion. We corrected
this with a scaling parameter equal to 1, which was the
best fit for our data in that it optimized goodness-of-fit
measures. Spearman correlation coefficients were calculated to examine the association between the number
of topics discussed and continuous practice variables
2014 Lippincott Williams & Wilkins

173

(years in practice, experience providing care to youth

with ASD, and pediatrician comfort discussing sexuality
with parents).

RESULTS
Sample Characteristics
Of the 235 pediatricians who began the study, 32
were eliminated due to missing data (i.e., no data or only
demographic data were provided), leaving 203 participants. The number of participants who responded to
each individual item ranged from 199 to 203. Demographic information for the sample is presented in
Table 1. The sample was 64.5% female and predominantly white. Most respondents practiced in urban
or suburban locales and across a variety of clinical settings. Ninety-five percent of the sample reported that
they provide care to children, 90% provide care to adolescents, and 35% provide care to young adults. The
median number of years in practice was 20 (mean 5 20,
SD 5 10.89, range 5 044). Eighty-five percent of the
sample reported that they had received training in
autism spectrum disorder (ASD; beyond their pediatric
medical residency); however, only 33% reported that
this training covered sexuality or sexual development.
Although it was not possible to calculate a response rate
due to the wide variety of recruitment techniques (e.g.,
emails, eNewsletters, websites), the sample was compared to existing studies with larger samples of pediatricians responding to surveys on related topics and was
found to be similar with respect to gender, geographic
region, locale (i.e., urban, suburban, rural practice), and
median years in practice.20,21

Discussion of Sexuality Topics

Ninety-two percent of pediatricians somewhat
agreed or very much agreed that providing accurate
information regarding physical sexual development is an
important part of their role. Likewise, 94% somewhat
agreed or very much agreed that providing accurate
information about sexual behavior is an important part of
their role. The percentage of participants who reported
discussing various sexuality-related topics is shown in
Table 2. Of the 26 sexuality-related discussion items,
the median number of topics addressed with each family
at least once was 10 (mean 5 10.6, SD 5 6.98, range 5
026). The most routinely discussed topics included
importance of optimizing self-care and social skills (not
specific to sexuality; 82%), emotional maturity (73%),
physical sexual development (i.e., puberty; 67%), how
cognitive deficits may affect behavior and socialization
(not specific to sexuality, 66%), and risk for abuse (54%).
The rest of the items were discussed at least once by
less than 50% of the participants and were most likely to
be addressed as indicated (e.g., when a problem arose
or if parents raised the issue). Pediatricians infrequently
endorsed discussing topics directly with youth without
parents present (i.e., sexual abuse or assault [25%],
174 Addressing Sexuality in Youth with ASD

reproduction or pregnancy [26%], contraception and

safe sex [32%]), and were also unlikely to discuss sexual
orientation (8%).
Analyses showed that geographic region, practice locale, work setting, and pediatrician gender did not predict the number of topics discussed with all families (all
p values $ .248). Also, number of years in practice did
not correlate with number of topics discussed (r 5 .104,
p 5 .140); however, experience in providing care for
children and adolescents with ASD was correlated with
the number of topics discussed (r 5 .361, p 5 .000).
Responses to comfort and training items are presented in Table 3. Regarding comfort and training, when
asked whether their medical training has prepared them
to provide sexuality care for youth with ASD, the modal
response was not at all (49%) and only 7% reported
that their training prepared them very well or fairly
well. However, pediatricians who reported that they
had received training in ASD and sexuality were more
comfortable discussing sexuality with both parents and
youth (t(198) 5 22.712, p 5 .007; MPARENTS 5 3.72,
MYOUTH 5 3.28; t(198) 5 22.323, p 5 .021; MPARENTS
5 3.49, MYOUTH 5 3.10) and, overall, self-reported
comfort discussing sexuality with both parents and youth
with ASD correlated with the number of topics routinely
discussed (rPARENTS 5 .495, p 5 .000; rYOUTH 5 .472,
p 5 .000). However, training did not predict the number of
topics discussed (x2(1, N 5 202) 5 2.581, p 5 .108).

Barriers to Discussing Sexuality

The percentage of participants who endorsed each of
the barriers assessed in the study is provided in Table 4.
The most commonly endorsed barriers (rated as at least
moderate) included: acute issues leaving less time for
preventative care (endorsed by 67%), lack of access to
accurate information on ASD and sexuality (63%), lack of
training on ASD and sexuality (61%), youths discomfort
discussing sexuality (58%), parents perception of youth
as childlike or asexual (54%), and parents discomfort
discussing sexuality (53%). Correlation analyses showed
that the number of barriers each participant rated as at
least moderate was not related to either years in practice
(r 5 .019, p 5 .81) or experience treating children and
adolescents with ASD (r 5 2.039, p 5 .64).

DISCUSSION
Addressing the development of sexuality in youth
with autism spectrum disorder (ASD) is an emerging area
of research and practical concern.5 Providing comprehensive sexuality-related care for families managing ASD
is complicated by the medical complexity of ASD and
concerns about matching sexuality-related topics to developmental level. Given the high prevalence of ASD,1 it
is important to maintain focus on this topic to enhance
healthy adult outcomes.
Pediatricians in this study overwhelmingly agreed that
providing accurate information about sexual development
Journal of Developmental & Behavioral Pediatrics

Table 1. Demographic and Practice Characteristics (N 5 203)

n (%)
Gender
Female
Male

131 (64.5)
72 (35.5)

Race
White/Caucasian
Asian

172 (85.1)
10 (5.0)

Hispanic

8 (4.0)

American Indian/Alaskan Native

2 (1.0)

Black

2 (1.0)

Native Hawaiian/Pacific Islander

2 (1.0)

White/Hispanic

2 (1.0)

Other/no answer

4 (2.0)

Geographic region
West

68 (33.7)

Midwest

41 (20.3)

Northeast

51 (25.2)

South

42 (20.8)

Practice locale
Urban

90 (44.6)

Suburban

77 (38.1)

Rural

35 (17.3)

Primary practice setting

Clinical practice group

74 (36.5)

Medical school/academic practice

34 (16.7)

Hospital-based practice

32 (15.8)

Solo/private practice

31 (15.3)

Public or community health center

Other or more than one setting

7 (3.4)
25 (12.3)

Proportion of practice ASD

125%

143 (70.4)

2650%

33 (16.3)

5175%

18 (8.9)

76100%

9 (4.4)

Ages in practice (ASD)

Children

192 (95.0)

Adolescents

181 (89.6)

Young adults

71 (35.1)

Medical specialization
Developmental/behavioral or
neurodevelopmental pediatrics
General pediatrics or none specified

73 (36.0)
108 (53.2)

Other (e.g., adolescent medicine, child psychiatry) 22 (10.8)

Training in ASD
Training in ASD and sexuality

173 (85.2)
67 (33.2)

all participants completed every question (range N 5 202203). ASD, autism

spectrum disorder.
aNot

Vol. 35, No. 3, April 2014

and behavior is an important part of their role, and

respondents reported that they regularly address a variety
of sexuality-related topics with youth with ASD and their
families. However, some important sexuality-related topics were rarely discussed or were discussed only as indicated rather than with all youth at a certain age or in an
ongoing manner (e.g., sexual orientation, safe sex practices, sexual abuse, and assault). Although it is encouraging
that pediatricians are addressing issues when they arise,
parents have expressed that they want pediatricians to
initiate more discussion about sexuality and to provide
proactive preventative care rather than addressing
sexuality-related issues only when problems arise.7,18 Additionally, few pediatricians reported that they discuss
sexuality-related topics directly with youth without their
parents being present, a practice recommended by the
American Academy of Pediatrics (AAP).6 Discussing
sexuality-related topics privately with youth while
informing parents that these discussions are taking place
is one way to model and encourage independence for
youth with disabilities. Thus, pediatricians are encouraged
to make private discussions with youth a priority when it
is appropriate to do so.
Several barriers were identified that inhibit more frequent or in-depth discussions of sexuality. The most
frequently endorsed barriers were related to support and
logistics, such as acute issues leaving less time for preventative care. Although these barriers likely represent
systemic problems that will not be easily addressed,
pediatricians are encouraged to make concerted efforts
to find time to initiate discussions of sexuality because
this would not only support healthy sexual development
in this population but could also help identify and prevent sexuality-related problems that are not being
addressed by parents or other professionals.
Other frequently endorsed barriers included lack of
training and resources. In the current study, we found
that those who reported having received training about
sexuality and ASD were more comfortable talking with
parents and youth about these topics. This is important
because previous research has found that physician discomfort is an impediment to discussing sexuality.22,23
Although few pediatricians in the current study reported
that their own discomfort impeded discussion of sexuality, pediatrician comfort was related to the number of
sexuality-related topics that pediatricians addressed with
families at some point during the course of care, suggesting that pediatricians should be mindful of how their
own level of comfort might influence whether they initiate conversations about sexuality-related topics.
Most pediatricians reported that their medical training
had not adequately prepared them to address sexuality in
youth with ASD, and only one third of pediatricians
reported having received specific training on ASD and
sexuality. In addition, most reported that they had insufficient information about this topic to share with
families. Thus, there are clear needs for both quality
training opportunities and support materials to better
2014 Lippincott Williams & Wilkins

175

Table 2. Sexuality-Related Topics Discussed with Families Managing Autism Spectrum Disorder (N 5 203)

Percent of Sample
At
Age

Ongoing

At Least
Once (At Age
or Ongoing)

Discussion Topic

No

As
Indicated

Discuss importance of optimizing independence in self-care and social

skills with parents (not specific to sexuality)

4.5

13.4

15.3

66.8

82.1

Discuss emotional maturity with parents

4.4

22.7

10.8

62.1

72.9

Discuss physical sexual development (puberty) with parents

5.4

28.1

41.4

25.1

66.5

Educate parents about how cognitive deficits may affect behavior and
socialization (not specific to sexuality)

7.4

27.1

14.8

50.7

65.5

Tell parents that youth with ASD are at increased risk for abuse

15.3

30.7

19.8

34.2

54.0

Discuss the possibility of inappropriate sexual behavior

11.4

39.3

23.4

25.9

49.3

8.4

42.9

30.5

18.2

48.7

Discuss sexuality/sexual behavior with parents

15.8

39.6

26.2

18.3

44.5

Discuss parents concerns and expectations about youths sexual

development and sexuality

7.4

48.8

24.1

19.7

43.8

Educate parents about how cognitive deficits and ASD symptoms

affect romantic relationships and sexuality

17.7

38.9

24.6

18.7

43.3

Encourage parents to be the primary teachers of sex education

18.5

41.0

18.5

22.0

40.5

Educate parents about childrens sexual functioning

10.8

48.8

25.6

14.8

40.4

Discuss advantages of developmentally appropriate sex education in

home, school, and community with parents

19.3

40.6

21.8

18.3

40.1

Assess for signs or early indications of sexual abuse

13.3

47.8

5.9

33.0

38.9

Interview youth about sexual behavior (w/o parents present)

26.6

35.5

25.1

12.8

37.9

Talk directly to youth about body image issues

17.2

48.3

17.2

17.2

34.4

Talk to parents about their youths level of sexual knowledge

15.4

50.2

21.4

12.9

34.3

Talk directly to youth about their level of sexual knowledge

21.5

44.5

20.0

14.0

34.0

Talk directly to youth about sexual attitudes, values, and beliefs

22.7

43.8

19.2

14.3

33.5

Discuss contraception and safe sex (with youth w/o parents present)

29.6

38.9

21.2

10.3

31.5

Discuss family values, religious beliefs, and cultural traditions in

relation to sexuality with parents

23.3

50.0

9.4

17.3

26.7

Discuss reproduction/pregnancy (with youth w/o parents present)

32.7

41.1

16.8

9.4

26.2

Provide families with factual information about sexuality and ASD

43.6

31.2

13.9

11.4

25.3

Interview youth about sexual abuse/rape/peer-pressured sex

(w/o parents present)

28.7

46.5

14.9

9.9

24.8

Provide families with information about community programs

that address sexuality for youth with ASD

54.5

28.7

8.4

8.4

16.8

Discuss sexual orientation with parents and/or youth with ASD

33.5

58.1

3.9

4.4

8.3

Talk directly to youth about social aspirations (e.g., marriage, children)

Most frequent response indicated in bold type. aNot all participants completed every question (range N 5 200203). ASD, autism spectrum disorder; w/o, without.

assist pediatricians in providing sexuality-related care.

Few such resources that can be generalized to the heterogeneous presentation of youth with ASD are currently
available. This is partially due to the dearth of highquality research on how ASD affects sexual development.5 Additional research is necessary to support
the development of evidence-based training protocols
and standardized materials to support pediatricians in
addressing the sexual health care needs of youth with
ASD because research has shown that standardized
materials and protocols (e.g., confidentiality protocols,
pamphlets) can have a positive effect on sexuality-related
practice20 and may be one way to increase comfort.
176 Addressing Sexuality in Youth with ASD

Pediatricians also reported that parent and youth discomfort with discussing sexuality was a significant barrier
to care. This is an intriguing finding given that multiple
studies have found that parents of children and adolescents with ASD report that they would welcome more
guidance from pediatricians to help them understand and
address their childs sexual development, sexual behavior, and sexual health.7,18 It may be that parents want to
engage in sexuality-related discussion despite their initial
experiences of discomfort. Discussing sexuality on an
ongoing basis beginning early in the childs course of care
will likely ameliorate feelings of discomfort on the part of
both the parent and the pediatrician.6
Journal of Developmental & Behavioral Pediatrics

Table 3. Pediatrician Training and Comfort (N 5 203)

n (%)
Received training in ASD
Yes

173 (85.2)

No

30 (14.8)

Received training in ASD and sexuality

Yes

67 (33.2)

No

135 (66.8)

How well medical training prepared you to

provide sexuality-related care to youth with ASD
Not at all

97 (48.7)

A little

54 (27.1)

Somewhat

35 (17.6)

Fairly well

8 (4.0)

Very well

5 (2.5)

Comfort discussing sexuality with parents of youth

with ASD
Not at all
A little

8 (4.0)
31 (15.4)

Somewhat

69 (34.3)

Considerably

53 (26.4)

Extremely

40 (19.9)

Comfort discussing sexuality with youth with ASD

Not at all

12 (6.0)

A little

38 (18.9)

Somewhat

75 (37.3)

Considerably

42 (20.9)

Extremely

34 (16.9)

aNot all participants completed every question (range N 5 199203). ASD, autism
spectrum disorder.

Another interesting finding that emerged in this study

was related to assessment and prevention of sexual
abuse and inappropriate sexual behavior (ISB). Research
has shown that children with disabilities are more than
twice as likely to be sexually abused as are children
without disabilities12,13 and may have a more difficult
time differentiating between behaviors that are appropriate versus those that are not (e.g., touching ones
genitals in private vs public settings).5 Although many
pediatricians in this study reported that they respond to
sexuality-related issues when they arise, little is currently
known about how healthcare professionals assess for
sexual abuse and ISB in this population. Indeed, in the
current study, 15% of pediatricians reported that they
did not assess for abuse at all, and almost half did so as
indicated rather than on a regular basis. Similarly, 11%
of pediatricians reported that they did not discuss the
possibility of ISB with parents and 39% did so as indicated
rather than with all families at some point during the
course of care. This is potentially problematic given that
youth with ASD may have significant developmental delays
(e.g., may be less verbal than a same-aged typically developing peer) and may therefore be less likely to report
abuse or may not recognize that their behavior is inappropriate. There is very little research on how physicians
and other health care providers assess for and intervene
around such problems once they are detected. Further
research is needed to ensure that high-quality, effective
assessment and intervention protocols are available to
physicians so that they can better address these important
topics with children and adolescents with ASD.
The current study had several limitations. First, the
sample was relatively small and the response rate could
not be accurately calculated due to the wide variety of
recruitment techniques (e.g., emails, eNewsletters,
websites), which raises issues of possible response bias

Table 4. Percent of Pediatricians Who Endorsed Barriers to Sexuality-Related Care with Youth with an Autism Spectrum Disorder (N 5 203)

Percent of Sample
Barriers
Parents discomfort

n
201

Not at
all
Slight Moderate Considerable Extreme
15.9

31.3

38.8

13.9

0.0

Youths discomfort

199

13.1

28.6

36.7

19.1

2.5

Your discomfort discussing sexuality with parents

201

45.8

32.3

15.4

6.0

0.5

Your discomfort discussing sexuality with youth

200

45.0

35.0

15.5

3.5

1.0

Prioritizing acute issues leaves little time for preventative care

201

15.4

17.9

26.9

26.9

12.9

Practice barriers (e.g., third party payment issues, short

allotted appointment times)

199

31.2

21.6

18.1

20.6

8.5

Parent perceives youth as childlike or asexual, regardless of age

200

18.5

27.5

32.5

20.5

1.0

Lack of training on sexuality for youth with disabilities

201

15.4

23.9

22.9

27.9

10.0

Lack of access to accurate/quality information to share with families 200

17.5

19.5

19.5

31.0

12.5

Fear of lawsuit or legal issues

200

82.5

13.5

3.5

0.5

0.0

Culture or language is different from your own

199

54.8

35.2

8.0

2.0

0.0

Most frequent response indicated in bold type. aNot all participants completed every question (range N 5 199201).

Vol. 35, No. 3, April 2014

2014 Lippincott Williams & Wilkins

177

and decreased generalizability. Second, although there

were no differences in the number of topics discussed
across the subspecialties endorsed by this sample, more
than 40% of the sample reported specializations in developmental and behavioral pediatrics and/or neurodevelopmental disabilities. As such, the findings of this
study may not represent the practices of pediatricians
with other specializations and very likely overestimate
the discussion of sexuality-related topics in general pediatric practice. Additionally, participants received recruitment emails through state chapters of the AAP and
thus were likely to be AAP members. As the AAP has
published recommendations on the development of
sexuality in youth with disabilities,6 these results may
overestimate use of best practices compared to the
general population of pediatricians. Future research
should attempt to collect broader community-based
samples of pediatric providers to better understand the
practices and barriers experienced by primary care
pediatricians caring for youth with and without ASD.
ACKNOWLEDGMENTS
The authors thank the Council on Children with Disabilities and
the many American Academy of Pediatrics (AAP) State Chapters who
helped with recruitment for this study, including the AAP Wisconsin
State Chapter.

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Journal of Developmental & Behavioral Pediatrics