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While considerable research has focused on promoting independence and optimizing quality of life for adolescents and young adult with autism spectrum disorder (ASD), sexual development and sexuality education have been largely neglected. Experts recommend that parents be the primary source of sex education for adolescents with ASD, and that sex education be tailored to a child's developmental level. Prior studies show that parents of youth with ASD are uncertain about how to best communicate about sex and which topics to discuss with their children. In the current study we administered an online survey to 190 parents of adolescents with ASD in order to better understand sexuality communication patterns between parents and adolescents with both low and high functioning ASD.
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BRIEF REPORT
Brief Report: Parent–Child Sexuality Communication and Autism
Spectrum Disorders
Laura G. Holmes Michael B. Himle
Springer Science+Business Media New York 2014
Abstract While considerable research has focused on
promoting independence and optimizing quality of life for
adolescents and young adult with autism spectrum disorder
(ASD), sexual development and sexuality education have
been largely neglected. Experts recommend that parents be
the primary source of sex education for adolescents with
ASD, and that sex education be tailored to a child’s
developmental level. Prior studies show that parents of
youth with ASD are uncertain about how to best commu-
nicate about sex and which topics to discuss with their
children. In the current study we administered an online
survey to 190 parents of adolescents with ASD in order to
better understand sexuality communication patterns
between parents and adolescents with both low and high
functioning ASD.
Keywords Sexuality Sexuality education Parent–child
sexuality communication Puberty Parents
Adolescence Adulthood
Introduction
Autism spectrum disorders (ASDs) affect one in 68 chil-
dren in the United States (Centers for Disease Control and
Prevention 2014). While early detection and intervention
can improve cognitive, social, and communicative func-
tioning (Dawson 2008), core symptoms typically persist
into adolescence and adulthood (Shattuck et al. 2007).
While considerable research has focused on promoting
independence and optimizing quality of life for adolescents
and young adults with ASD (Singh et al. 2009), the areas of
sexual development and sexuality have been largely
neglected (Gougeon 2010). This is perhaps due in part to
enduring beliefs by both parents and professionals that
youth with ASD lack interest in sexual relationships
(Gougeon 2010). However, recent research indicates that
both higher-functioning (HF) and lower-functioning (LF)
individuals with ASD desire and pursue sexual relation-
ships and engage in a variety of sexual behaviors typical of
most people (e.g., Byers et al. 2013; Hellemans et al. 2007,
2010; Van Bourgondien et al. 1997). Given this, sexuality
education for youth with ASD is essential in order to
promote sexual health and prevent negative sexual health
outcomes (e.g., unwanted pregnancy, HIV/AIDS, inap-
propriate sexual behavior; Koller 2000; Sullivan and
Caterino 2008).
It is generally recommended that parents be the primary
sexuality educators for their children and that parent–child
sexuality communication should be an ongoing, bidirec-
tional process beginning early in life and continuing into
early adulthood (Sexuality Information and Education
Council of the United States 2012). However, research has
shown that many parents of youth with ASD are uncertain
about how and when to cover sexuality with their child and
what sexuality-related topics they should cover (Ballan
2012; Nichols and Blakeley-Smith 2010). As a result, some
parents may delay or avoid covering important sexuality-
related topics, leaving their child to learn about these topics
from other, possibly less credible, sources. Indeed, at least
one study surveyed youth with ASD and found that they
were more likely to report having learned about most
sexuality topics by themselves or from peers rather than
from their parents (Mehzabin and Stokes 2011), but studies
examining which topics parents report having covered with
L. G. Holmes M. B. Himle (&)
Department of Psychology, University of Utah, 380 South 1530
East BEHS 502, Salt Lake City, UT 84112, USA
e-mail: Michael.himle@utah.edu
123
J Autism Dev Disord
DOI 10.1007/s10803-014-2146-2
their child are lacking. The primary purpose of the current
study was to better understand the types of sexuality-rela-
ted topics parents cover with youth with ASD. Secondarily,
because previous studies have found that ASD symptom
severity and cognitive/verbal abilities were related to
whether children with ASD had received sex education
more generally (i.e., in the home, community, or school;
Ballan 2012; Ruble and Dalrymple 1993), we examined
whether child characteristics (functional level, ASD
symptoms, age) predicted parent–child sexuality commu-
nication for HF and LF youth with ASD.
Methods
Participants
Parents of adolescents with ASD were invited to complete
an anonymous online survey about ASD and sex education.
Recruitment took place thorough local and national autism
support groups via electronic postings in 2012–2013. Par-
ents were eligible to participate if they reported that they
had an adolescent child (ages 12–18 years) diagnosed with
ASD, and that the diagnosis had been conferred by a
healthcare professional. 198 parents who met these criteria
completed the survey. Of these, eight were excluded
because they completed only a small portion of the survey.
The final sample consisted of 190 participants. Parents
were predominantly Caucasian (88.2 %) females (92.0 %)
with a median age of 46 years (M=46.87, SD =6.41).
Most parents were married or cohabiting (78.3 %). The
majority (68.8 %) had a Bachelor’s degree education or
higher.
The adolescents upon whom parents were reporting
were predominantly Caucasian (89.3 %) males (86.8 %)
with a median age of 14 years (M=14.51, SD =1.96).
Parents were asked to report their child’s measured IQ (if
known, N=167) or to provide a best-estimate IQ
(N=23). On the first question, IQ was presented in terms
of standard scores and official descriptive guidelines (e.g.,
average, slightly below average or borderline, profound
mental retardation; American Psychiatric Association
2000). We acknowledged that some parents would not
know their child’s IQ score, and asked parents who indi-
cated ‘‘I don’t know’’ on the first question to estimate their
child’s overall level of cognitive functioning based on the
same descriptive guidelines. Per parent report, 68.9 % of
the adolescents fell in the average or above average range
(IQ =86–116?), 12.6 % fell in the slightly below average
or borderline range (IQ =71–85), 8.4 % had below aver-
age IQ or mild intellectual disability (ID; 56–70), 4.7 %
had far below average IQ or moderate ID (41–55), and
5.2 % had severe or profound ID (IQ B40). Regarding
ASD symptoms, most youth (89.4 %) fell within the
‘Moderate’’ or ‘‘Severe’’ range on the Social Respon-
siveness Scale-2nd edition (SRS-2). SRS-2 Total Standard
Scores ranged from 55 to 90, (M=78.49, SD =9.23),
which is consistent with a diagnosis of ASD. HF and LF
youth had significantly different mean SRS-2 Total Scores
(t(188) =-2.245, p=.026; M
HF
=77.50, SD =9.34;
M
LF
=80.71, SD =8.67).
All adolescents lived at home with their parents, and
most (68.6 %) attended mainstream public school. 90.4 %
of adolescents in this sample had begun to show signs of
puberty. Parents were also asked to indicate (‘‘Yes’’, ‘‘No’’,
‘Not Sure’’) whether their child had, to their knowledge,
engaged in a variety of sexual behaviors. Descriptive
information about adolescent sexual behavior is provided
in Table 1.
Measures
Social Responsiveness Scale-2nd Edition (Parent Report)
(SRS-2)
The SRS-2 (Constantino and Gruber 2012) is a 65-item
rating scale designed to measure the severity of autism
spectrum symptoms with emphasis on social impairment.
It provides a total score and several subscale scores (i.e.,
Social Motivation, Social Cognition, Social Awareness,
Social Communication, and Repetitive Behavior).
T-scores of 60–75 are typical for people with mild or
‘high functioning’’ ASD and suggest deficiencies in
reciprocal social behavior with mild to moderate inter-
ference in everyday social interactions. The measure has
acceptable psychometric properties (Constantino and
Gruber 2012).
Online Sexuality Survey
Parents completed a 50-item online sexuality survey con-
taining questions about parent and child demographics,
child ASD symptoms, and parent–child sexuality commu-
nication. In the parent–child sexuality communication part,
parents reviewed a list of 39 sexuality-related topics and
endorsed those that they had covered with their child.
Topics included privacy, sexual abuse prevention, physical
development of boys and girls, reproduction, pregnancy
and STD prevention, sexual decision-making, relation-
ships, consent and coercion, and sexual health (see
Table 2). Items for the survey were chosen based on pre-
vious research on this topic (Beckett et al. 2009; Koller
2000; Nichols and Blakeley-Smith 2010; Travers and
Tincani 2010; Wolfe et al. 2009). Responses were summed
to create a number of sexuality topics covered (NSTC)
variable for each parent (range =0–39).
J Autism Dev Disord
123
Results
Because sexuality communication practices are likely to
differ based on the functioning of the child, the sample was
split into LF and HF youth based on parent-reported IQ
(see above). Adolescents were considered HF if their par-
ent reported that their IQ was within the average or above
average range (N=131) and were considered LF if their
parent reported below average IQ or lower (N=59). HF
and LF adolescents did not differ on age (t(188) =.383,
p=.702; M
HF
=14.54, SD =1.95; M
LF
=14.42,
SD =2.00) or gender (X
2
(1, N=190) =.012, p=.913).
Parent–child sexuality communication responses for
both HF and LF youth are provided in Table 2. NSTC for
HF youth ranged from 0 to 39 (M=21.95, SD =9.58).
For LF youth, the range was 0–38 (M=13.35,
SD =9.64). For HF youth, the most commonly endorsed
topics included privacy and private body parts (98.5 and
96.9 %), what kinds of touch are okay/not okay (95.4 %),
hygiene (93.1 %), public/private discussion topics
(91.5 %), and male puberty (91.5 %). For LF youth, the
most commonly endorsed topics were private body parts
and privacy (94.7 and 89.5 %), what kinds of touch are
okay/not okay (91.2 %), hygiene (89.5 %), and public
versus private discussion topics (67.9 %). For HF youth,
parents were least likely to endorse covering sexual
activities other than intercourse (29.2 %), symptoms of
STDs (27.1 %), how to use a condom (19.5 %), and how to
choose a method of birth control (14.7 %). For LF youth,
least commonly endorsed topics included how to ask
someone on a date (21.1 %), how to make decisions about
whether to have sex (19.3 %), how well birth control can
prevent pregnancy (14.3 %), and how to use a condom
(10.5 %).
To examine whether functional level was associated
with number of sexuality-related topics covered by parents,
we conducted a multiple linear regression and found that
functional level (high vs. low functioning) predicted NSTC
(B=-.381, SE =1.517, p=.000) after controlling for
child age (B=.138, SE =.355, p=.044) and gender
(B=.034, SE =2.050, p=.611). Not surprisingly, par-
ents of HF children covered a greater number of topics than
parents of LF children (R
2
=.167, F(3, 182) =12.156,
p=.000). Gender was not a significant predictor and thus
was not included in the remaining analyses.
To determine whether specific child ASD characteristics
affected number of sex-related topics covered by parents,
we ran a series of linear regressions with SRS-2 Total
Table 1 Parent-reported sexual behaviors displayed by adolescents with autism spectrum disorders (N=190
a
)
Has your child everHigh functioning n(%) Low functioning n(%)
Yes No Not sure Yes No Not sure
Expressed the desire for a relationship (dating, marriage, family)? 90 (69.2) 39 (30.0) 1 (0.8) 19 (32.8) 36 (62.1) 3 (5.2)
Shown or expressed attraction to anyone of the other sex? 95 (73.1) 32 (24.6) 3 (2.3) 37 (63.8) 18 (31.0) 3 (5.2)
Shown or expressed attraction to anyone of the same sex? 13 (10.0) 109 (83.8) 8 (6.2) 5 (8.6) 52 (89.7) 1 (1.7)
Had a sexual/romantic relationship with anyone of the other sex? 10 (7.7) 118 (90.8) 2 (1.5) 3 (5.2) 55 (94.8) 0 (0.0)
Had a sexual/romantic relationship with anyone of the same sex? 2 (1.5) 127 (97.7) 1 (0.8) 0 (0.0) 56 (100.0) 0 (0.0)
Had sexual intercourse? 2 (1.5) 125 (96.2) 3 (2.3) 0 (0.0) 58 (100.0) 0 (0.0)
Talked about private sexual topics while in public? 27 (20.8) 94 (72.3) 9 (6.9) 6 (10.3) 50 (86.2) 2 (3.4)
Intruded on other’s privacy? (e.g., entered rooms without knocking,
asked inappropriate questions)
54 (41.5) 72 (55.4) 4 (3.1) 25 (43.1) 27 (46.6) 6 (10.3)
Peeked at others? (i.e., purposefully looked at someone bathing or
undressing)
20 (15.5) 92 (71.3) 17 (13.2) 8 (13.8) 39 (67.2) 11 (19.0)
Undressed in public inappropriately? 12 (9.2) 114 (87.7) 4 (3.1) 20 (34.5) 36 (62.1) 2 (3.4)
Masturbated privately in an appropriate setting? 39 (30.0) 42 (32.3) 49 (37.7) 30 (52.6) 16 (28.1) 11 (19.3)
Masturbated in the presence of others or in public? 5 (3.8) 123 (94.6) 2 (1.5) 15 (25.9) 40 (69.0) 3 (5.2)
Shown attraction to specific sexual parts of other people’s bodies? (e.g.,
breasts, legs, bottoms)
38 (29.2) 81 (62.3) 11 (8.5) 23 (39.7) 33 (56.9) 2 (3.4)
Shown attraction to specific non-sexual parts of other people’s bodies?
(e.g., feet, hair)
17 (13.1) 104 (80.0) 9 (6.9) 10 (17.2) 44 (75.9) 4 (6.9)
Shown or expressed attraction to inanimate objects? 6 (4.6) 120 (92.3) 4 (3.1) 4 (6.9) 50 (86.2) 4 (6.9)
Touched people inappropriately in a sexual way? 10 (7.7) 116 (89.2) 4 (3.1) 10 (17.2) 46 (79.3) 2 (3.4)
Been victimized by peers due to lack of knowledge of slang or social
behavior (e.g., ‘‘go say this,’’ ‘‘kiss her’’)
23 (17.7) 86 (66.2) 21 (16.2) 8 (14.0) 38 (66.7) 11 (19.3)
a
Not all participants completed every question (range N=187–190)
J Autism Dev Disord
123
Table 2 Sexuality education topics covered by parents (N=190
a
)
Which topics have you covered with your child? High functioning n(%) Low functioning
n(%)
Yes No Yes No
Privacy
Privacy (e.g., knocking before entering rooms, undressing in private) 128 (98.5) 2 (1.5) 51 (89.5) 6 (10.5)
Private body parts 126 (96.9) 4 (3.1) 54 (94.7) 3 (5.3)
Public and private discussion topics 119 (91.5) 11 (8.5) 38 (67.9) 18 (32.1)
Sexual abuse prevention/consent
What kinds of touch are okay/not okay 124 (95.4) 6 (4.6) 52 (91.2) 5 (8.8)
How to report sexual abuse 92 (70.8) 38 (29.2) 24 (42.1) 33 (57.9)
How to say no if someone wants to have sex and your child does not 65 (50.0) 65 (50.0) 16 (28.1) 41 (71.9)
The importance of not pressuring other people to have sex 52 (40.0) 78 (60.0) 11 (20.0) 44 (80.0)
Puberty/reproduction
Hygiene (e.g., washing genitals) 121 (93.1) 9 (6.9) 51 (89.5) 6 (10.5)
How boys’ bodies change physically as they grow up 119 (91.5) 11 (8.5) 34 (60.7) 22 (39.3)
Wet dreams 68 (52.7) 61 (47.3) 16 (28.1) 41 (71.9)
How girls’ bodies change physically as they grow up 90 (69.8) 39 (30.2) 19 (33.3) 38 (66.7)
Menstruation (menstrual periods) 84 (65.1) 45 (34.9) 15 (26.8) 41 (73.2)
How women get pregnant and have babies 97 (75.2) 32 (24.8) 22 (38.6) 35 (61.4)
Relationships
What qualities are important in choosing close friends 113 (86.9) 17 (13.1) 34 (60.7) 22 (39.3)
Dating and marriage 84 (64.6) 46 (35.4) 18 (31.6) 39 (68.4)
How to ask someone out on a date 59 (45.4) 71 (54.6) 12 (21.1) 45 (78.9)
How your child will know whether s/he is in love 56 (43.4) 73 (56.6) 14 (24.6) 43 (75.4)
How to deal with romantic rejection 55 (42.3) 75 (57.7) 14 (24.6) 43 (75.4)
How your child will make decisions about whether to have sex 63 (48.8) 66 (51.2) 11 (19.3) 46 (80.7)
Family types and roles 93 (71.5) 37 (28.5) 24 (42.1) 33 (57.9)
Parenting 88 (67.7) 42 (32.3) 17 (29.8) 40 (70.2)
Sexual health/prevention
The necessity of regular exams by themselves/with doctors (e.g., pap, breast and testes
exams)
48 (37.2) 81 (62.8) 13 (22.8) 44 (77.2)
Reasons why your child should not have sex 82 (63.6) 47 (36.4) 14 (24.6) 43 (75.4)
Consequences of getting pregnant/getting someone pregnant 82 (63.6) 47 (36.4) 15 (26.8) 41 (73.2)
How well birth control can prevent pregnancy 56 (43.8) 72 (56.3) 8 (14.3) 48 (85.7)
How to choose a method of birth control 19 (14.7) 110 (85.3) 3 (5.3) 54 (94.7)
Symptoms of STDs 35 (27.1) 94 (72.9) 5 (8.8) 52 (91.2)
How people can prevent getting STDs 64 (49.2) 66 (50.8) 13 (22.8) 44 (77.2)
How well condoms prevent STDs 54 (41.9) 75 (58.1) 11 (19.3) 46 (80.7)
How to use a condom 25 (19.5) 103 (80.5) 6 (10.5) 51 (89.5)
What to do if a partner doesn’t want to use a condom 23 (17.8) 106 (82.2) 1 (1.8) 56 (98.2)
Sexuality
Sexual slang terms that people might use 69 (53.1) 61 (46.9) 18 (31.6) 39 (68.4)
Homosexuality/people being gay 107 (82.9) 22 (17.1) 22 (38.6) 35 (61.4)
Sexuality as a positive aspect of self 58 (44.6) 72 (55.4) 13 (22.8) 44 (77.2)
Masturbation (e.g., is it okay? When/where it is appropriate) 78 (60.0) 52 (40.0) 38 (66.7) 19 (33.3)
What it feels like to have sex 24 (18.5) 106 (81.5) 6 (10.5) 51 (89.5)
Sexual activities other than intercourse 38 (29.2) 92 (70.8) 7 (12.3) 50 (87.7)
J Autism Dev Disord
123
Score and subscale scores as the independent variables and
NSTC as the dependent variable. Analyses were run sep-
arately for low and high functioning groups. For the HF
group, child age and SRS-2 Total Score were correlated
(r=-.300, p=.001), so multicollinearity diagnostics
were examined for all analyses.
For the HF group, a multiple regression showed that
child age (B=.203, SE =.444, p=.027) but not SRS-2
Total Score (B=.167, SE =.093, p=.069) significantly
predicted NSTC (F(2, 126) =3.234, p=.043, R
2
=
.049). Thus, child age was included in SRS-2 subscale
analyses. A series of hierarchical linear regression analyses
showed that, of the five SRS-2 subscales, only social
cognition and social motivation were predictive of NSTC
after controlling for child age. Regarding social cognition,
higher SRS-2 social cognition scores (B=.207, SE =
.086, p=.020) predicted a greater number of topics dis-
cussed over and above the variance accounted for by child
age (F(2, 126) =4.344, p=.015, R
2
=.065, R
2
change =
.041). Regarding social motivation, higher SRS-2 social
motivation scores (B=.205, SE =.075, p=.020) predicted
a greater number of topics covered by parents over and above
the variance accounted for by child age (F(2, 126) =4.339,
p=.015, R
2
=.064, R
2
change =.041).
For the LF group, neither SRS-2 Total Score (B=
-.122, SE =.158, p=.367) nor child age (B=.123,
SE =.646, p=.364) predicted NSTC (F(2, 54) =.940,
p=.397, R
2
=.034). None of the SRS-2 subscale scores
predicted NSTC when controlling for child age (all
p’s C.075).
Discussion
The present study investigated parent–child sexuality
communication for high and low functioning adolescents
with ASD. Consistent with previous research, most HF and
LF youth with ASD in our sample were interested in sex-
uality and had displayed sexual interest and behaviors,
further emphasizing the need for parent–child sexuality
communication and sexuality education. Also congruent
with previous research (Mehzabin and Stokes 2011),
parents in the current study reported covering some
sexuality-related topics with their children but not others,
leaving youth to learn about important sexual health topics
from other sources that are potentially less credible than
parents. For HF youth, most parents reported having cov-
ered topics related to privacy, sexual abuse prevention,
puberty and hygiene, and some basic relationship (e.g.,
family types and roles) and sexual health topics (e.g.,
consequences of getting someone pregnant). However,
many parents did not cover topics related to relationships,
sexual health and prevention, or general sexuality (e.g.,
sexual activities other than intercourse). Parents of LF
youth reported covering privacy, sexual abuse prevention,
and some puberty and reproduction topics, but were less
likely to cover relationships, sexual health and prevention
of unwanted behaviors and outcomes, or general sexuality.
The second aim of the present study was to examine
whether the number of sexuality-related topics that parents
covered with their child was related to specific child
characteristics. Researchers have suggested that overall
ASD severity and specific ASD symptom severity may be
related to whether parents cover sexuality-related topics or
provide sexuality education more generally (Ballan 2012;
Ruble and Dalrymple 1993). In the present study, specific
symptoms, rather than overall ASD symptom severity,
were better predictors of the number of sexuality-related
topics that parents covered with their children. Specifically,
parents of HF youth who rated their child as more socially
motivated and more skilled at social cognitive tasks (e.g.,
interpreting social cues) covered a greater number of sex-
uality-related topics with their child, suggesting that spe-
cific ASD characteristics (especially social deficits) may be
better predictors of whether parents provide sex education
than overall ASD severity (considered here as distinct from
cognitive functioning). In addition, a few interesting
developmental trends emerged. First, and perhaps not
surprisingly, parents of HF youth covered a greater number
of topics compared to parents of LF youth. Second, when
considering parents of HF and LF youth separately, we
found that parents of HF youth covered a greater number of
sexuality-related topics as their adolescent aged. In con-
trast, parents of LF youth appeared to cover basic topics
Table 2 continued
Which topics have you covered with your child? High functioning n(%) Low functioning
n(%)
Yes No Yes No
Sexual or romantic differences/difficulties that might result from ASD 31 (24.0) 98 (76.0) 6 (10.7) 50 (89.3)
Reasons why people like to have sex 52 (40.0) 78 (60.0) 15 (26.3) 42 (73.7)
STDs sexually transmitted diseases, ASD autism spectrum disorder
a
Not all participants completed every question (range N=184–190)
J Autism Dev Disord
123
(e.g., sexual abuse prevention, privacy), yet did not appear
to introduce discussion of more sophisticated topics as their
child aged. This pattern may be due to parents’ perception
that more sophisticated sexuality-related topics are not
relevant for their child, or perhaps that parents felt unable
to effectively communicate about basic sexuality topics
and so did not pursue discussion of more sophisticated and
nuanced topics as their child aged.
Several limitations of the current study warrant mention.
First, parent–child sexuality communication was defined as
the number of sexuality-related topics that parents reported
having covered with their child. This metric does not
capture important elements of parent–child sexuality
communication such as frequency or depth of discussion,
accuracy of the information provided, or how the infor-
mation was presented (e.g., discussion vs. skills-based
instruction). Second, there are inherent strengths and
weaknesses of anonymous online surveys. In particular, the
behavior of the parents and children cannot be indepen-
dently verified. On the other hand, parents may be more
likely to respond honestly about their sexuality communi-
cation practices knowing that the survey is anonymous.
Third, the parents in the current study were recruited
thorough local and national autism support groups and the
sample was relatively homogenous (predominantly Cau-
casian, married mothers who tended to be well educated);
thus the results may not generalize to the broader popula-
tion of parents of children with ASD. Fourth, no compar-
ison group was included and we could not determine
whether topic coverage differed for this sample compared
to typically developing peers. Most parents in this sample
reported that they covered basic sexuality-related topics
(e.g., puberty, abstinence, reproduction), but failed to cover
more sophisticated topics (e.g., pregnancy and STD pre-
vention, sexual decision-making). This pattern may reflect
topics that most parents (regardless of ASD diagnosis)
discuss when providing sexuality education to their chil-
dren. Fifth, there was a selection bias wherein parents who
chose to participate were predominantly mothers (92 %)
who reported on sons (87 %). Due to this imbalance, we
were unable to comprehensively examine gender differ-
ences, though gender was included as a predictor in anal-
yses. Research on parent–child sexuality communication in
the families of typically developing children has consis-
tently found differences based on parent and child gender
(for a review, see DiIorio et al. 2003). For example, in
general mothers engage in more sexuality communication
than fathers, and engage more frequently with daughters
than sons. Given the sex differences in ASD prevalence
and severity (Fombonne 2005), future research should aim
to recruit fathers and daughters in order to examine how
parent and child gender interact to affect sexuality con-
versations between parents and youth with ASD. Finally,
given the preliminary nature of this research, we were not
able to address all topics relevant to all families affected by
ASD. Future research should aim to identify and under-
stand other sexuality-related topics relevant to sexuality
and sexuality communication in individuals and families
with ASD (e.g., nontraditional romantic arrangements,
dating neurotypical people versus dating others on the
spectrum).
Despite these limitations, this study was the most
comprehensive to date examining parent–child sexuality
communication in this population, and highlighted the
difficult task that parents are entrusted with. Previous
research has shown that many parents of children with
ASD report that they are uncertain about the meaning of
healthy sexuality for youth with ASD and do not feel
supported in their efforts to provide effective sexuality
education (Nichols and Blakeley-Smith 2010). In addition,
previous research has shown that many parents report that
they wished that had introduced more sophisticated topics
earlier (Ballan 2012), suggesting that there is a need to
provide these parents with more guidance regarding how
and when to introduce sexuality-related topics in a devel-
opmentally appropriate manner. The current study suggests
that parents of children with ASD do indeed provide sex
education about a variety of important sexuality-related
topics, however some important topics were less frequently
covered. Further research is needed to better understand
why parents cover some topics versus others and which
topics are most relevant. In addition, the developmental
trends observed in this study highlight the need for
developmentally tailored parent–child sexuality commu-
nication programs that consider the child’s level of intel-
lectual functioning, age, and unique ASD symptoms. This
information may be used to develop interventions that
build on current parent practices and strengths and while
remediating limitations.
References
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (revised 4th ed.). Washington, DC:
Author.
Ballan, M. S. (2012). Parental perspectives of communication about
sexuality in families of children with autism spectrum disorders.
Journal of Autism and Developmental Disorders, 42, 676–684.
Beckett, M. K., Elliott, M. N., Martino, S., Kanouse, D. E., Corona,
R., Klein, D. J., et al. (2009). Timing of parent and child
communication about sexuality relative to children’s sexual
behaviors. Pediatrics, 125, 34–42.
Byers, E. S., Nichols, S., Voyer, S. D., & Reilly, G. (2013). Sexual
well-being of a community sample of high-functioning adults on
the autism spectrum who have been in a romantic relationship.
Autism, 17, 418–433.
Centers for Disease Control and Prevention. (2014). Prevalence of
autism spectrum disorders among children aged 8 years.
J Autism Dev Disord
123
Surveillance Summaries, 63, 1–21. Retrieved from http://www.
cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=ss6302a1_e.
Accessed 13 April 2014.
Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness
scale (2nd ed.). Los Angeles, CA: Western Psychological
Services.
Dawson, G. (2008). Early behavioral intervention, brain plasticity,
and the prevention of autism spectrum disorder. Development
and Psychopathology, 20, 775–803.
DiIorio, C., Pluhar, E., & Belcher, L. (2003). Parent–child commu-
nication about sexuality: A review of the literature from
1980–2002. Journal of HIV/AIDS Prevention & Education for
Adolescents & Children, 5, 7–32.
Fombonne, E. (2005). Epidemiological studies of pervasive develop-
mental disorders. In F. Volkmar, R. Paul, A. Klin, & D. Cohen
(Eds.), Handbook of autism and pervasive developmental
disorders (Vol. 1, pp. 42–69). Hoboken, NJ: Wiley.
Gougeon, N. A. (2010). Sexuality and autism: A critical review of
selected literature using a social-relational model of disability.
American Journal of Sexuality Education, 5, 328–361.
Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R., &
Deboutte, D. (2007). Sexual behavior in high-functioning
male adolescents and young adults with autism spectrum
disorder. Journal of Autism and Developmental Disorders,
37, 260–269.
Hellemans, H., Roeyers, H., Leplae, W., Dewaele, T., & Deboutte, D.
(2010). Sexual behavior in male adolescents and young adults
with autism spectrum disorder and borderline/mild mental
retardation. Sexuality and Disability, 28, 93–104.
Koller, R. (2000). Sexuality and adolescents with autism. Sexuality
and Disability, 18, 125–135.
Mehzabin, P., & Stokes, M. A. (2011). Self-assessed sexuality in
young adults with high-functioning autism. Research in Autism
Spectrum Disorders, 5, 614–621.
Nichols, S., & Blakeley-Smith, A. (2010). ‘‘I’m not sure we’re ready
for this’: Working with families toward facilitating healthy
sexuality for individuals with autism spectrum disorders. Social
Work in Mental Health, 8, 72–91.
Ruble, L. A., & Dalrymple, N. J. (1993). Social/sexual awareness of
persons with autism: A parental perspective. Archives of Sexual
Behavior, 22, 229–240.
Sexuality Information and Education Council of the United States.
(2012). Position Statements. Retrieved from http://www.siecus.
org/index.cfm?fuseaction=page.viewPage&pageId=494&parentID=
472#sexuality%20education.
Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt,
D., Kring, S., et al. (2007). Change in autism symptoms and
maladaptive behaviors in adolescents and adults with an autism
spectrum disorder. Journal of Autism and Developmental
Disorders, 37, 1735–1747.
Singh, J., Illes, J., Lazzeroni, L., & Hallmayer, J. (2009). Trends in
US autism research funding. Journal of Autism and Develop-
mental Disorders, 39, 788–795.
Sullivan, A., & Caterino, L. C. (2008). Addressing the sexuality and
sex education of individuals with autism spectrum disorders.
Education and Treatment of Children, 31, 381–394.
Travers, J., & Tincani, M. (2010). Sexuality education for individuals
with autism spectrum disorders: Critical issues and decision-
making guidelines. Education and Training in Autism and
Developmental Disabilities, 45, 284–293.
Van Bourgondien, M. E., Reichle, N. C., & Palmer, A. (1997). Sexual
behavior in adults with autism. Journal of Autism and Devel-
opmental Disorders, 27, 113–125.
Wolfe, P. S., Condo, B., & Hardaway, E. (2009). Sociosexuality
education for persons with autism spectrum disorders using
principles of applied behavior analysis. Teaching Exceptional
Children, 42, 50–61.
J Autism Dev Disord
123
... Persistence of such trends over a period of time can lead the child to exclude genital feelings from his consciousness, rendering a significant characteristic of himself denied. Holistically, this may culminate in the infant developing a phobic attitude towards sex or sexual activities when he or she transits the adolescence and eventually grows up to become an adult (Holmes & Himle, 2014). This phobic attitude espouses the Sociological Theory of Sexuality which opines that cultures define what is right and wrong sexually. ...
... Others, who perceive adolescence psychologically, regard it as the development of cognition, feelings, and behaviour that characterise the stage. Be it psychological or biological an adolescent may be seen as a young person between the ages of twelve and twenty (Holmes & Himle, 2014). ...
... People can therefore overrate the value of behavioural problems and underrate healthy habits, which contribute to higher problem behaviours. In addition, subjective norms resulting from an inaccurate evaluation of what others are doing will affect social behaviour (Holmes & Himle, 2014). ...
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There are societal variations as to how masturbation is regarded because some societies regard it as a religious or cultural bizarre, while others tolerate it on biological grounds. This study employed a descriptive survey design to explore adolescents' attitudes towards masturbation in selected senior high schools in the Cape Coast Metropolis of Ghana. The target population was formed by form two students in both schools. The total population for the second-year students in the boys' school was 509, while the second-year students in the girls' school were 496. Specifically, it was carried out in two single-sex Senior High Schools (SHS) in the Cape Coast Metropolis. Purposive sampling was employed to select single-sex schools in the metropolis, as they are noted for the practice of masturbation. Three hypotheses on masturbatory practices, attitudes toward masturbation and masturbatory practices and self-concept were formulated for the study. The results indicated that implicitly, both sexes' masturbatory practices are similar. Both sexes also have similar attitude towards masturbation; as well as the masturbatory practices and self-concept in the Cape Coast Metropolis. Similarly, it was found that the attitude of both sexes towards masturbation was characterised by ambivalence, as they regarded it to be an 196 irreligious and bad practice, yet, they covertly practised it. It was recommended that stakeholders should give adolescents thorough sexual education without expressing their prejudices concerning masturbation. They should be made to understand that sexual urges are a natural part of their development that must, however, be controlled for moral and spiritual reasons.
... Over the years, many people including parents have not acknowledged that persons with developmental disabilities (DD) have sexual feelings, needs, and desires because of their impairments [31,33,50]. There exist several myths depicting people with DD's as being asexual, hypersexual (sexually uncontrollable), immature and dependent on their parents for everything relating to their existence [4,21,74]. ...
... Overall, forty-six parents participated in the survey and indicated positive attitudes towards sex education for their children and they also acknowledged they had good knowledge about the sexuality of their children, but majority of parents had not provided sex education for their children. These finding are consistent with studies which have reported that many parents of children with DD tend not to provide their children with DD, with sex related information for a variety of reasons including concerns for cognitive maturity, views that it may not be necessary [7,33,68,73], and feeling they lack the required information about their children's sexuality [5,35]. Regarding knowledge acquisition of their own sexuality, most parents reported that they had never received sexual education training from a professional. ...
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... Parents report that they do not feel prepared to serve as sexual health educators [12]. The topics that are discussed with autistic children vary relative to children's cognitive abilities [13] and a parent's own personal experience [14]. For instance, parents of autistic children without cognitive impairments were less likely to discuss relationships or sexual activities other than sex than they were to discuss puberty, hygiene, and pregnancy [13]. ...
... The topics that are discussed with autistic children vary relative to children's cognitive abilities [13] and a parent's own personal experience [14]. For instance, parents of autistic children without cognitive impairments were less likely to discuss relationships or sexual activities other than sex than they were to discuss puberty, hygiene, and pregnancy [13]. For autistic children with cognitive impairments, parents were less likely to cover relationships and prevention of unwanted behavior, a critical safety related behavior, than they were to discuss puberty and hygiene. ...
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Limited access to sexual health information is a significant problem faced by young adults with intellectual and developmental disabilities. In a survey of family members and school-based professionals, we assessed which sexual health topics are covered by whom, as well as from whom survey respondents believe young adults with intellectual and developmental disabilities should be getting information. Participants report providing some sexual health information but that more information should be provided, especially on topics such as sexual orientation and gender identity. Results demonstrate medical providers are being expected to provide more sexual health information, and that the internet is a non-preferred source of education. These findings should inform recommendations about who should be providing sexual health education for young adults with intellectual and developmental disabilities.
... They also raised concerns about their child's ability to comprehend conversations about sex and romantic relationships. Likewise, Holmes and Himle (2014) found that parents of individuals with ASD tended to cover certain topics (e.g., privacy, sexual abuse prevention, hygiene, puberty) with over others (e.g., relationships, sexuality, sexual health) with their children. ...
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The love and companionship provided from romantic relationships is a right for all adults, yet many adults with intellectual and developmental disabilities (IDD) have been unable to experience these forms of relationship. This study investigates the experiences and perspectives on romantic relationships regarding adults with IDD involved in an inclusive supported living program. We asked residents with IDD, their parents, graduate student residents (without disabilities), and organization staff for their insights into the romantic relationships of adults with IDD and how the organization could better support those relationships. The residents with IDD described romantic relationships in various ways, but all emphasized their importance. Participants discussed an array of challenges in this area, including difficulty meeting people to date, challenges with social skills, and a lack of comprehensive sexual education. Likewise, the study noted a number of tensions that arise when supporting adults with IDD to pursue romantic relationships, including their comfort addressing this area, navigating dignity of risk, and acceptance from family members. The residents, parents, and staff members also provided helpful recommendations for how supported living organizations can most effectively support individuals with IDD in romantic relationships.
... Some demographics and data on family sexuality communication and parent activities to prepare youth for vocation and independent living are described elsewhere. [30][31][32] Parents were eligible to participate if they reported that their adolescent had a formal medical diagnosis of autism spectrum disorder. There were no specific exclusion criteria. ...
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Sexuality and sex education are basic human rights. However, individuals with developmental disabilities (DD) often lack the knowledge and skills regarding their sexuality due to negative attitudes of significant others around them. This study explored the attitudes and concerns of parents regarding sexuality and sex education of their children with DD. Eleven (11) parents living in Accra participated in in-depth interviews utilized for this qualitative investigation. The children of these participants were aged 10–18 years. Thematic analysis of the data revealed five main themes: (1) Hinderances to sex education; (2) Parental Concerns; (3) Child agency in sexuality; (4) Proper sex education needs; and (5) Hopes for future love relationships. Results indicated that in general, parents did not provide sex education for their children due to the perceived cognitive ability of their children to comprehend issues of sexuality. Secondly, access to resources that match their children’s cognitive ability are not available to parents. Nonetheless, parents were concerned about their children being sexually abused and hoped for a better family life for them in the future. Findings are further discussed in the context of implications to inform policy, guidance, and appropriate sexual education for parents, society, and schools working with children with DD.
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Chapter
Design of Epidemiological Studies Characteristics of Autistic Samples Rates of Other Pervasive Developmental Disorders Time Trends Immigrant Status, Ethnicity, Social Class, and Other Correlates Conclusion
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Introduction Epidemiological surveys of autism started in the mid 1960s in England (Lotter, 1966, 1967) and have since then been conducted in many countries. Most epidemiological surveys have focused on a categorical-diagnostic approach to autism that has relied over time on different sets of diagnostic criteria; however, all surveys used a definition of autism which comprised severe impairments in communication and language, social interactions, and play and behavior. This chapter is therefore concerned with autism defined as a severe developmental disorder and not with more subtle autistic features or symptoms that occur as part of other, more specific, developmental disorders, as unusual personality traits, or as components of the lesser variant of autism thought to index genetic liability to autism in relatives. With the exception of recent studies, other pervasive developmental disorders (PDDs) falling short of diagnostic criteria for autistic disorder - pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger's syndrome - were generally not included in the case definition used in earlier surveys although several epidemiological investigations yielded useful information on the rates of these particular types of PDD. These data are summarized separately. The aims of this chapter are to provide an up-to-date review of the methodological features and substantive results of published epidemiological surveys. This chapter updates our previous reviews (Fombonne, 1998, 1999, 2003a) with the inclusion of new studies made available since then.
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This article provides a summary of selected research conducted on the sexuality, as well as sexual knowledge and behaviors of individuals with autism over the past 20 years. The discussion section reviews the research according to the following recurrent themes: the importance of sexuality in the lives of individuals with autism, the discourse of problematic sexuality, and the difficulty in translating knowledge into practice. Using Reindal's (2008)71. Reindal , S. M. 2008. A social-relational model of disability: A theoretical framework for special needs education? [Electronic version]. European Journal of Special Needs Education, 23(2): 135–146. [Taylor & Francis Online]View all references pragmatic social-relational model of disability, this article provides an analysis of the research and offers suggestions for future inquiries in this area.
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