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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.
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... Aileler, OSB'li bireylerde cinsellikle ilgili hangi becerilerin öğretileceğini içeren araştırmaların önemli ölçüde eksik olduğunu bildirmektedirler (Ballan, 2012;Dekker, Van Der Vegt & Visser, 2015;Holmes & Himle, 2014). Söz konusu OSB'li bireyleri de çatısında toplayan nörogelişimsel bozukluğu olan bireyler olduğundaysa KCE ile ilgili alanyazın, cinsellik hakkında hangi bilgilerin öğretileceği konusunda karar vermesi gereken ebeveynler ve uzmanlar için şu önerileri sunmaktadır: a) KCE programlarının hazırlanmasında ailenin de dâhil olduğu BEP ekibindeki rolünü önemsemek, b) Öğrencinin kendi KCE programına katılımını göz önünde bulundurmak, c) Ekip üyeleri arasında KCE ile ilgili olası anlaşmazlıkları öngörmek (Travers & Tincani, 2010). ...
... Yanı sıra OSB'li bireyin cinsellik eğitimiyle ilgi düşüncelerini açıklamak istemeyeceği veya bireyin bilinçli bir şekilde cinsellik eğitimine onay vermeyeceği durumlar da dile getirmektedirler. Böylesi durumlarda uzmanlar, bireyin ilgili eğitime gereksinimi olup olmadığını belirlemek adına bireyi farklı değerlendirme araçlarıyla değerlendirmesi önerilmektedir (Patti, 1995 (Holmes & Himle, 2014), OSB'li çocuklarını aseksüel ya da cinsellikle ilgili bağımsız karar verme yetisinden uzak olduğunu gibi bir gerekçeyle bunu fazla bir yük olarak görebilirler (Lesseliers & Van Hove, 2002). Bu ve benzer gerekçelerden dolayı aileler bu eğitimi vermenin okul sorumluluğunda olduğunu belirtebilir veya cinsellik konusunu tamamen göz ardı edebilirler. ...
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Otizm Spektrum Bozukluğu (OSB) olan bireylerin cinsellikleri, cinsel gelişimleri ve bu bireylere sunulması gereken kapsamlı cinsellik eğitimi çok yakın zamanlarda araştırılmaya başlanan ve detaylı incelenmesi gereken konular arasındandır. Bu nedenle bu çalışmayla OSB'li bireylere sunulan kapsamlı cinsellik eğitimi (KCE) hakkında detaylı bilgilere yer verilerek özel eğitim alanına ve OSB'li bireylerle çalışan tüm paydaşlara katkı sunulması amaçlanmıştır. Bu amaç doğrultusunda da bir derleme çalışması gerçekleştirilmiştir. Araştırma sonucunda bulgular, OSB'li bireylerin KCE gereksinimi ve bu eğitimde öğretilmesi gereken konular; OSB'li bireylere cinsellik becerileri öğretecek kişilere ilişkin karar verme ve bu becerileri seçme konusunda karar alma sürecinin işleyişi şeklinde ortaya çıkmış, bu bireylerin KCE almalarının temel hak olduğunu bir kez daha vurgulanmıştır. Ayrıca bu bireylerin ilgili eğitiminden anne babanın eşit sorumluluğu olduğunu, mahremiyet ve cinsellikle ilgili becerilerin öğretiminde özel eğitim öğretmeni başta olmak üzere diğer tüm uzmanlarla iş birliği yapılmasının önemli olduğu sonucu da ulaşılmıştır. Anahtar Sözcükler: Otizm spektrum bozukluğu, cinsel gelişim, kapsamlı cinsellik eğitimi, cinsellik. COMPREHENSIVE SEXUALITY EDUCATION AND INDIVIDUALS WITH AUTISM SPECTRUM DISORDER ABSTRACT The sexuality, sexual development and comprehensive sexuality education of individuals with autism spectrum disorder (ASD) are among the issues that have recently begun to be investigated and need to be explained in detail. For this reason, this study aims to contribute to the field of special education and all stakeholders working with ASD by providing detailed information about the comprehensive sexuality education (CSE) offered to individuals with ASD. In accordance with this aim, studies in the literature were reviewed. As the result of the research findings, the sexuality of individuals with ASD education topics that should be taught in this training and the need for individuals with ASD and sexuality of people who will teach the skills decision making in selecting the decision-making process emerged in the form of the functioning of these individuals. It has been concluded that parents have equal responsibility for the relevant education of these individuals, and that it is important to cooperate with all other experts, especially the special education teacher, in teaching skills related to privacy and sexuality.
... Parents can create an individualised teaching plan that is pertinent, applicable, and appropriate to their children and family. Parents will have the advantage of using various learning strategies, methods, controlling the time as they deem fit, content to be taught, and can align the topics with their children's learning styles, habits, personalities, age, norms, the family beliefs, culture, and values (Holmes & Himle, 2014;Kee-Jiar et al, 2020). Based on the above, the aim of this study was to explore experiences of parents and caregivers in order to understand the sexuality of adolescents with disabilities. ...
... Furthermore, when sexual education classes provide specific information about sexuality, students with ASD report that they do not know how to apply it to life situations (44). In addition, persons with ASD learn significantly less about sexuality and romantic functioning from peers and friends (and more from parents) than TD persons, a type of learning more closely related with real life circumstances (16,29,44,45). As a result, sexual knowledge is more limited for persons with ASD, especially during the crucial period of adolescence or the first years of adulthood (1,18,20). ...
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Although most persons with an Autism Spectrum Disorder (ASD) wish to have romantic and/or sexual relationships, little is known about self-report sexuality of adolescents/young adults with ASD. In this exploratory study, 172 male and female adolescents/young adults (68 with ASD and 104 without ASD) completed an online version of the Sexual Behavior Scale-Third edition. Although many more similarities than differences were observed between the groups for views and desires about romantic relationships (e.g., wishing to have a girlfriend/boyfriend), fewer participants with ASD (mostly boys) had experience with a variety of sexual/dyadic behaviors, and approximately half of girls with ASD reported negative sexual experiences. Significantly higher rates of participants with ASD felt their knowledge about sexuality was limited and found it difficult to understand sexual education compared with typically developing (TD) participants. Significantly lower rates of participants with ASD reported that they identify to their assigned gender compared with TD participants. Multiple regressions revealed that being older at first diagnosis and possessing better knowledge about sexuality were significant predictors of both positive and negative sexual experience. This study explores strengths and challenges related with the sexual health of adolescents/young adults with ASD and implications for clinical and educational practice are discussed.
... Sexual attraction and activity are part of normal adolescent development (Tolman & McClelland, 2011). Most people on the autism spectrum experience sexual attraction (Gilmour et al., 2012;May et al., 2017) and many are sexually active, including adolescents (Byers et al., 2013a(Byers et al., , 2013bByers et al., 2013aByers et al., , 2013bHellemans et al., 2007;Holmes & Himle, 2014;Mehzabin & Stokes, 2011;Ousley & Mesibov, 1991;Strunz et al., 2017). Up to 70% of autistic adolescent boys have engaged in partnered sexual behavior (Dewinter et al., 2015(Dewinter et al., , 2016, and one study found that autistic adolescent girls and neurotypical controls had comparable sexual activity (May et al., 2017). ...
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Background This systematic review investigated the state of intervention science on programs that promote healthy intimate relationship skills and sexual health for autistic youth (i.e., healthy intimacy).Methods Using PRISMA guidelines, we reviewed randomized controlled trials (RCTs) published in 2010 or later that enrolled ≥ 1 autistic adolescent participant.ResultsOf 1934 articles returned, three met inclusion criteria: Supporting Teens with Autism on Relationships, Tackling Teenage Training, and Peers Engaged in Effective Relationships-Decision-Making. All increased content knowledge and one improved social/ behavioral functioning.Conclusion We identified three RCT-supported interventions for autistic youth that teach healthy intimacy skills. Comparative effectiveness research on these programs would benefit the field.
... Compared to people without disabilities, adolescents with intellectual disabilities were less likely to utilize a health professional or peers to obtain information about sexual health and reproduction [5]. Additionally, while parents can play a critical role in providing sex education, parents of people with autism and other developmental disabilities report difficulty in communicating in a detailed manner appropriate for their child's development [5][6][7][8]. In fact, research suggests that both parents and educators lack self-efficacy to provide sex education to people with developmental disabilities [6,[8][9][10][11]. ...
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Sex education is important for individuals with developmental disabilities; however, it is difficult for educators to find resources to support them when teaching sex education. A website, asdsexed.org, was developed to disseminate sex education resources. Using analytic data from the website we explored how dissemination occurs online. We identified (1) how visitors were referred to the website; (2) what search terms were used to look for sex education resources; (3) what content was most frequently viewed; and (4) how visitors engaged with the content. Search engines were the top referrer. Variations on the phrase “body parts” were the most frequently recorded terms. Free lesson plans were the most viewed content. Privacy social stories were the most engaged with content. Online dissemination was a complex undertaking but did allow for potential sex educators to be connected with research-based resources.
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Background: Little is known about how to evaluate relationships and sex education (RSE) delivered to students with intellectual disability and what stakeholders perceive are important outcomes. The present study aimed to systematically review existing studies on outcomes of RSE, as the first step in the development of a core outcome set (COS) for students with intellectual disability. Method: A systematic literature process included two stages: (1) searching for studies reporting on RSE outcomes for students with intellectual disability and (2) studies reporting on measurement properties (e.g. validity, reliability and responsiveness) of standardised instruments identified in stage 1. Results: A total of 135 RSE outcomes were extracted from 42 studies: 43 outcomes for students in secondary education and 92 outcomes for students in further education. No RSE outcomes were reported for primary education. Outcomes referred to the human body, hygiene, relationships, sexuality, sex and its consequences, inappropriate and appropriate social and sexual behaviour, keeping safe, emotional vocabulary and positive self-esteem. Outcomes were predominantly knowledge-based, rather than relating to skills and attitudes development. Students with intellectual disability, parents and teachers perceive different RSE outcomes meaningful. Five instruments were used to measure the outcomes, but none have established psychometric properties with this population. Conclusions: The comprehensive list of RSE outcomes for students with intellectual disability will be used to inform the next steps of a Core Outcome Set needed for RSE evaluations in research and education settings. There is an urgent need to develop standardised instruments validated for students with intellectual disability.
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Common theories used to study parent–child sexual communication (PCSC) often do not account for social location, trauma, and the multidimensional experience of being a parent, limiting our ability to understand PCSC behavior. To address this gap, we propose an expanded theoretical perspective based on social cognitive theory (SCT) that focuses on the relationship between self of the parent (including trauma history), PCSC behavior, and social location. With this perspective, we call attention to the SCT concepts of goals, outcome expectancies, self‐efficacy, and observational learning, directly apply them to PCSC processes, and highlight how each is related to social location (e.g., race) and trauma. We call upon PCSC researchers to explore how social location and trauma affect a wide variety of components of self of the parent, how social location and trauma affect PCSC behavior, and how social location and trauma affect the relationship between self of parent and PCSC behavior.
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Sexuality and relationship education (SRE) occurs in many formats. In order to inform best practices, current trends of SRE sources must be characterized. Using an online survey of autistic and neurotypical adults in the United States, we compared eleven potential sources of SRE across nine content areas. Source use did not differ significantly across five of the content areas. Same-aged peers were consulted less often by the autistic adults for flirting, dating, and consent. For partnered sexual behavior, neurotypical adults reported consulting romantic partners significantly more often than autistic adults. Across all groups, use of the internet as a source of information was high. The need for improving SRE access based on existing trends is discussed.
Chapter
In this chapter, the five steps used to conduct the scoping review are outlined. It begins by explaining how the research questions were formulated. The purpose of these questions was to support the focus of this scoping review; namely, to uncover the experiences and insights of autistics about their sexual behaviours, relationships, sexuality, and gender identity. The search terms, academic databases consulted, and the inclusion and exclusion criteria are then outlined. The studies included and excluded from this scoping review are then listed, followed by an explanation of the characteristics that were identified in the studies that could address the research questions and the focus of this scoping review.
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Navigating adolescence can be extremely difficult, especially for teens who are also dealing with the core symptoms of autism spectrum disorders (ASDs). Adolescence can also be a difficult time period for parents who struggle to know how best to support their teen. The present study aimed to (a) acquire information via focus groups about the concerns and service needs of parents regarding the sexuality development of their youth with ASDs and (b) evaluate the effectiveness of an 8-week parent sexuality-education curriculum. Themes that emerged from the parent focus groups are discussed along with outcomes from the parent education curriculum.
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
Article
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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This paper addresses the need for sexuality education for individuals with autism spectrum disorders. It provides a brief overview of autism and Asperger’s Syndrome as well as a summary of the existing literature regarding the sexuality of this population. The existing research suggests that there is a high frequency of sexual behaviors among individuals with these disorders. A number of these behaviors may become problematic for caregivers and service providers because they violate societal norms regarding appropriate interpersonal behavior and may jeopardize the inclusion of this group in educational and community settings. The existing sex education programs for individuals with ASD are reviewed, highlighting the major components of programs tailored to this population.