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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
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
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
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
n (%)
Gender
Female
Male
131 (64.5)
72 (35.5)
Race
White/Caucasian
Asian
172 (85.1)
10 (5.0)
Hispanic
8 (4.0)
2 (1.0)
Black
2 (1.0)
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)
74 (36.5)
34 (16.7)
Hospital-based practice
32 (15.8)
Solo/private practice
31 (15.3)
7 (3.4)
25 (12.3)
143 (70.4)
2650%
33 (16.3)
5175%
18 (8.9)
76100%
9 (4.4)
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)
173 (85.2)
67 (33.2)
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
4.5
13.4
15.3
66.8
82.1
4.4
22.7
10.8
62.1
72.9
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
11.4
39.3
23.4
25.9
49.3
8.4
42.9
30.5
18.2
48.7
15.8
39.6
26.2
18.3
44.5
7.4
48.8
24.1
19.7
43.8
17.7
38.9
24.6
18.7
43.3
18.5
41.0
18.5
22.0
40.5
10.8
48.8
25.6
14.8
40.4
19.3
40.6
21.8
18.3
40.1
13.3
47.8
5.9
33.0
38.9
26.6
35.5
25.1
12.8
37.9
17.2
48.3
17.2
17.2
34.4
15.4
50.2
21.4
12.9
34.3
21.5
44.5
20.0
14.0
34.0
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
23.3
50.0
9.4
17.3
26.7
32.7
41.1
16.8
9.4
26.2
43.6
31.2
13.9
11.4
25.3
28.7
46.5
14.9
9.9
24.8
54.5
28.7
8.4
8.4
16.8
33.5
58.1
3.9
4.4
8.3
Most frequent response indicated in bold type. aNot all participants completed every question (range N 5 200203). ASD, autism spectrum disorder; w/o, without.
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
n (%)
Received training in ASD
Yes
173 (85.2)
No
30 (14.8)
67 (33.2)
No
135 (66.8)
97 (48.7)
A little
54 (27.1)
Somewhat
35 (17.6)
Fairly well
8 (4.0)
Very well
5 (2.5)
8 (4.0)
31 (15.4)
Somewhat
69 (34.3)
Considerably
53 (26.4)
Extremely
40 (19.9)
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.
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
201
45.8
32.3
15.4
6.0
0.5
200
45.0
35.0
15.5
3.5
1.0
201
15.4
17.9
26.9
26.9
12.9
199
31.2
21.6
18.1
20.6
8.5
200
18.5
27.5
32.5
20.5
1.0
201
15.4
23.9
22.9
27.9
10.0
17.5
19.5
19.5
31.0
12.5
200
82.5
13.5
3.5
0.5
0.0
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).
177
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