A-Holmes & Himle (2014)
A-Holmes & Himle (2014)
DOI 10.1007/s10803-014-2146-2
BRIEF REPORT
Abstract While considerable research has focused on independence and optimizing quality of life for adolescents
promoting independence and optimizing quality of life for and young adults with ASD (Singh et al. 2009), the areas of
adolescents and young adult with autism spectrum disorder sexual development and sexuality have been largely
(ASD), sexual development and sexuality education have neglected (Gougeon 2010). This is perhaps due in part to
been largely neglected. Experts recommend that parents be enduring beliefs by both parents and professionals that
the primary source of sex education for adolescents with youth with ASD lack interest in sexual relationships
ASD, and that sex education be tailored to a child’s (Gougeon 2010). However, recent research indicates that
developmental level. Prior studies show that parents of both higher-functioning (HF) and lower-functioning (LF)
youth with ASD are uncertain about how to best commu- individuals with ASD desire and pursue sexual relation-
nicate about sex and which topics to discuss with their ships and engage in a variety of sexual behaviors typical of
children. In the current study we administered an online most people (e.g., Byers et al. 2013; Hellemans et al. 2007,
survey to 190 parents of adolescents with ASD in order to 2010; Van Bourgondien et al. 1997). Given this, sexuality
better understand sexuality communication patterns education for youth with ASD is essential in order to
between parents and adolescents with both low and high promote sexual health and prevent negative sexual health
functioning ASD. outcomes (e.g., unwanted pregnancy, HIV/AIDS, inap-
propriate sexual behavior; Koller 2000; Sullivan and
Keywords Sexuality Sexuality education Parent–child Caterino 2008).
sexuality communication Puberty Parents It is generally recommended that parents be the primary
Adolescence Adulthood 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
Introduction early adulthood (Sexuality Information and Education
Council of the United States 2012). However, research has
Autism spectrum disorders (ASDs) affect one in 68 chil- shown that many parents of youth with ASD are uncertain
dren in the United States (Centers for Disease Control and about how and when to cover sexuality with their child and
Prevention 2014). While early detection and intervention what sexuality-related topics they should cover (Ballan
can improve cognitive, social, and communicative func- 2012; Nichols and Blakeley-Smith 2010). As a result, some
tioning (Dawson 2008), core symptoms typically persist parents may delay or avoid covering important sexuality-
into adolescence and adulthood (Shattuck et al. 2007). related topics, leaving their child to learn about these topics
While considerable research has focused on promoting 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
L. G. Holmes M. B. Himle (&)
sexuality topics by themselves or from peers rather than
Department of Psychology, University of Utah, 380 South 1530
East BEHS 502, Salt Lake City, UT 84112, USA from their parents (Mehzabin and Stokes 2011), but studies
e-mail: Michael.himle@utah.edu examining which topics parents report having covered with
123
J Autism Dev Disord (2014) 44:2964–2970 2965
their child are lacking. The primary purpose of the current ASD symptoms, most youth (89.4 %) fell within the
study was to better understand the types of sexuality-rela- ‘‘Moderate’’ or ‘‘Severe’’ range on the Social Respon-
ted topics parents cover with youth with ASD. Secondarily, siveness Scale-2nd edition (SRS-2). SRS-2 Total Standard
because previous studies have found that ASD symptom Scores ranged from 55 to 90, (M = 78.49, SD = 9.23),
severity and cognitive/verbal abilities were related to which is consistent with a diagnosis of ASD. HF and LF
whether children with ASD had received sex education youth had significantly different mean SRS-2 Total Scores
more generally (i.e., in the home, community, or school; (t(188) = -2.245, p = .026; MHF = 77.50, SD = 9.34;
Ballan 2012; Ruble and Dalrymple 1993), we examined MLF = 80.71, SD = 8.67).
whether child characteristics (functional level, ASD All adolescents lived at home with their parents, and
symptoms, age) predicted parent–child sexuality commu- most (68.6 %) attended mainstream public school. 90.4 %
nication for HF and LF youth with ASD. 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,
Methods engaged in a variety of sexual behaviors. Descriptive
information about adolescent sexual behavior is provided
Participants in Table 1.
123
2966 J Autism Dev Disord (2014) 44:2964–2970
Table 1 Parent-reported sexual behaviors displayed by adolescents with autism spectrum disorders (N = 190a)
Has your child ever… High 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, 54 (41.5) 72 (55.4) 4 (3.1) 25 (43.1) 27 (46.6) 6 (10.3)
asked inappropriate questions)
Peeked at others? (i.e., purposefully looked at someone bathing or 20 (15.5) 92 (71.3) 17 (13.2) 8 (13.8) 39 (67.2) 11 (19.0)
undressing)
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., 38 (29.2) 81 (62.3) 11 (8.5) 23 (39.7) 33 (56.9) 2 (3.4)
breasts, legs, bottoms)
Shown attraction to specific non-sexual parts of other people’s bodies? 17 (13.1) 104 (80.0) 9 (6.9) 10 (17.2) 44 (75.9) 4 (6.9)
(e.g., feet, hair)
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 23 (17.7) 86 (66.2) 21 (16.2) 8 (14.0) 38 (66.7) 11 (19.3)
behavior (e.g., ‘‘go say this,’’ ‘‘kiss her’’)
a
Not all participants completed every question (range N = 187–190)
123
J Autism Dev Disord (2014) 44:2964–2970 2967
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 48 (37.2) 81 (62.8) 13 (22.8) 44 (77.2)
exams)
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)
123
2968 J Autism Dev Disord (2014) 44:2964–2970
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)
Score and subscale scores as the independent variables and parents in the current study reported covering some
NSTC as the dependent variable. Analyses were run sep- sexuality-related topics with their children but not others,
arately for low and high functioning groups. For the HF leaving youth to learn about important sexual health topics
group, child age and SRS-2 Total Score were correlated from other sources that are potentially less credible than
(r = -.300, p = .001), so multicollinearity diagnostics parents. For HF youth, most parents reported having cov-
were examined for all analyses. ered topics related to privacy, sexual abuse prevention,
For the HF group, a multiple regression showed that puberty and hygiene, and some basic relationship (e.g.,
child age (B = .203, SE = .444, p = .027) but not SRS-2 family types and roles) and sexual health topics (e.g.,
Total Score (B = .167, SE = .093, p = .069) significantly consequences of getting someone pregnant). However,
predicted NSTC (F(2, 126) = 3.234, p = .043, R2 = many parents did not cover topics related to relationships,
.049). Thus, child age was included in SRS-2 subscale sexual health and prevention, or general sexuality (e.g.,
analyses. A series of hierarchical linear regression analyses sexual activities other than intercourse). Parents of LF
showed that, of the five SRS-2 subscales, only social youth reported covering privacy, sexual abuse prevention,
cognition and social motivation were predictive of NSTC and some puberty and reproduction topics, but were less
after controlling for child age. Regarding social cognition, likely to cover relationships, sexual health and prevention
higher SRS-2 social cognition scores (B = .207, SE = of unwanted behaviors and outcomes, or general sexuality.
.086, p = .020) predicted a greater number of topics dis- The second aim of the present study was to examine
cussed over and above the variance accounted for by child whether the number of sexuality-related topics that parents
age (F(2, 126) = 4.344, p = .015, R2 = .065, R2 change = covered with their child was related to specific child
.041). Regarding social motivation, higher SRS-2 social characteristics. Researchers have suggested that overall
motivation scores (B = .205, SE = .075, p = .020) predicted ASD severity and specific ASD symptom severity may be
a greater number of topics covered by parents over and above related to whether parents cover sexuality-related topics or
the variance accounted for by child age (F(2, 126) = 4.339, provide sexuality education more generally (Ballan 2012;
p = .015, R2 = .064, R2 change = .041). Ruble and Dalrymple 1993). In the present study, specific
For the LF group, neither SRS-2 Total Score (B = symptoms, rather than overall ASD symptom severity,
-.122, SE = .158, p = .367) nor child age (B = .123, were better predictors of the number of sexuality-related
SE = .646, p = .364) predicted NSTC (F(2, 54) = .940, topics that parents covered with their children. Specifically,
p = .397, R2 = .034). None of the SRS-2 subscale scores parents of HF youth who rated their child as more socially
predicted NSTC when controlling for child age (all motivated and more skilled at social cognitive tasks (e.g.,
p’s C .075). 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
Discussion better predictors of whether parents provide sex education
than overall ASD severity (considered here as distinct from
The present study investigated parent–child sexuality cognitive functioning). In addition, a few interesting
communication for high and low functioning adolescents developmental trends emerged. First, and perhaps not
with ASD. Consistent with previous research, most HF and surprisingly, parents of HF youth covered a greater number
LF youth with ASD in our sample were interested in sex- of topics compared to parents of LF youth. Second, when
uality and had displayed sexual interest and behaviors, considering parents of HF and LF youth separately, we
further emphasizing the need for parent–child sexuality found that parents of HF youth covered a greater number of
communication and sexuality education. Also congruent sexuality-related topics as their adolescent aged. In con-
with previous research (Mehzabin and Stokes 2011), trast, parents of LF youth appeared to cover basic topics
123
J Autism Dev Disord (2014) 44:2964–2970 2969
(e.g., sexual abuse prevention, privacy), yet did not appear given the preliminary nature of this research, we were not
to introduce discussion of more sophisticated topics as their able to address all topics relevant to all families affected by
child aged. This pattern may be due to parents’ perception ASD. Future research should aim to identify and under-
that more sophisticated sexuality-related topics are not stand other sexuality-related topics relevant to sexuality
relevant for their child, or perhaps that parents felt unable and sexuality communication in individuals and families
to effectively communicate about basic sexuality topics with ASD (e.g., nontraditional romantic arrangements,
and so did not pursue discussion of more sophisticated and dating neurotypical people versus dating others on the
nuanced topics as their child aged. spectrum).
Several limitations of the current study warrant mention. Despite these limitations, this study was the most
First, parent–child sexuality communication was defined as comprehensive to date examining parent–child sexuality
the number of sexuality-related topics that parents reported communication in this population, and highlighted the
having covered with their child. This metric does not difficult task that parents are entrusted with. Previous
capture important elements of parent–child sexuality research has shown that many parents of children with
communication such as frequency or depth of discussion, ASD report that they are uncertain about the meaning of
accuracy of the information provided, or how the infor- healthy sexuality for youth with ASD and do not feel
mation was presented (e.g., discussion vs. skills-based supported in their efforts to provide effective sexuality
instruction). Second, there are inherent strengths and education (Nichols and Blakeley-Smith 2010). In addition,
weaknesses of anonymous online surveys. In particular, the previous research has shown that many parents report that
behavior of the parents and children cannot be indepen- they wished that had introduced more sophisticated topics
dently verified. On the other hand, parents may be more earlier (Ballan 2012), suggesting that there is a need to
likely to respond honestly about their sexuality communi- provide these parents with more guidance regarding how
cation practices knowing that the survey is anonymous. and when to introduce sexuality-related topics in a devel-
Third, the parents in the current study were recruited opmentally appropriate manner. The current study suggests
thorough local and national autism support groups and the that parents of children with ASD do indeed provide sex
sample was relatively homogenous (predominantly Cau- education about a variety of important sexuality-related
casian, married mothers who tended to be well educated); topics, however some important topics were less frequently
thus the results may not generalize to the broader popula- covered. Further research is needed to better understand
tion of parents of children with ASD. Fourth, no compar- why parents cover some topics versus others and which
ison group was included and we could not determine topics are most relevant. In addition, the developmental
whether topic coverage differed for this sample compared trends observed in this study highlight the need for
to typically developing peers. Most parents in this sample developmentally tailored parent–child sexuality commu-
reported that they covered basic sexuality-related topics nication programs that consider the child’s level of intel-
(e.g., puberty, abstinence, reproduction), but failed to cover lectual functioning, age, and unique ASD symptoms. This
more sophisticated topics (e.g., pregnancy and STD pre- information may be used to develop interventions that
vention, sexual decision-making). This pattern may reflect build on current parent practices and strengths and while
topics that most parents (regardless of ASD diagnosis) remediating limitations.
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 %) References
who reported on sons (87 %). Due to this imbalance, we
were unable to comprehensively examine gender differ- American Psychiatric Association. (2000). Diagnostic and statistical
ences, though gender was included as a predictor in anal- manual of mental disorders (revised 4th ed.). Washington, DC:
Author.
yses. Research on parent–child sexuality communication in Ballan, M. S. (2012). Parental perspectives of communication about
the families of typically developing children has consis- sexuality in families of children with autism spectrum disorders.
tently found differences based on parent and child gender Journal of Autism and Developmental Disorders, 42, 676–684.
(for a review, see DiIorio et al. 2003). For example, in Beckett, M. K., Elliott, M. N., Martino, S., Kanouse, D. E., Corona,
R., Klein, D. J., et al. (2009). Timing of parent and child
general mothers engage in more sexuality communication communication about sexuality relative to children’s sexual
than fathers, and engage more frequently with daughters behaviors. Pediatrics, 125, 34–42.
than sons. Given the sex differences in ASD prevalence Byers, E. S., Nichols, S., Voyer, S. D., & Reilly, G. (2013). Sexual
and severity (Fombonne 2005), future research should aim well-being of a community sample of high-functioning adults on
the autism spectrum who have been in a romantic relationship.
to recruit fathers and daughters in order to examine how Autism, 17, 418–433.
parent and child gender interact to affect sexuality con- Centers for Disease Control and Prevention. (2014). Prevalence of
versations between parents and youth with ASD. Finally, autism spectrum disorders among children aged 8 years.
123
2970 J Autism Dev Disord (2014) 44:2964–2970
Surveillance Summaries, 63, 1–21. Retrieved from http://www. Nichols, S., & Blakeley-Smith, A. (2010). ‘‘I’m not sure we’re ready
cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=ss6302a1_e. for this…’’: Working with families toward facilitating healthy
Accessed 13 April 2014. sexuality for individuals with autism spectrum disorders. Social
Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness Work in Mental Health, 8, 72–91.
scale (2nd ed.). Los Angeles, CA: Western Psychological Ruble, L. A., & Dalrymple, N. J. (1993). Social/sexual awareness of
Services. persons with autism: A parental perspective. Archives of Sexual
Dawson, G. (2008). Early behavioral intervention, brain plasticity, Behavior, 22, 229–240.
and the prevention of autism spectrum disorder. Development Sexuality Information and Education Council of the United States.
and Psychopathology, 20, 775–803. (2012). Position Statements. Retrieved from http://www.siecus.
DiIorio, C., Pluhar, E., & Belcher, L. (2003). Parent–child commu- org/index.cfm?fuseaction=page.viewPage&pageId=494&parentID=
nication about sexuality: A review of the literature from 472#sexuality%20education.
1980–2002. Journal of HIV/AIDS Prevention & Education for Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt,
Adolescents & Children, 5, 7–32. D., Kring, S., et al. (2007). Change in autism symptoms and
Fombonne, E. (2005). Epidemiological studies of pervasive develop- maladaptive behaviors in adolescents and adults with an autism
mental disorders. In F. Volkmar, R. Paul, A. Klin, & D. Cohen spectrum disorder. Journal of Autism and Developmental
(Eds.), Handbook of autism and pervasive developmental Disorders, 37, 1735–1747.
disorders (Vol. 1, pp. 42–69). Hoboken, NJ: Wiley. Singh, J., Illes, J., Lazzeroni, L., & Hallmayer, J. (2009). Trends in
Gougeon, N. A. (2010). Sexuality and autism: A critical review of US autism research funding. Journal of Autism and Develop-
selected literature using a social-relational model of disability. mental Disorders, 39, 788–795.
American Journal of Sexuality Education, 5, 328–361. Sullivan, A., & Caterino, L. C. (2008). Addressing the sexuality and
Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R., & sex education of individuals with autism spectrum disorders.
Deboutte, D. (2007). Sexual behavior in high-functioning Education and Treatment of Children, 31, 381–394.
male adolescents and young adults with autism spectrum Travers, J., & Tincani, M. (2010). Sexuality education for individuals
disorder. Journal of Autism and Developmental Disorders, with autism spectrum disorders: Critical issues and decision-
37, 260–269. making guidelines. Education and Training in Autism and
Hellemans, H., Roeyers, H., Leplae, W., Dewaele, T., & Deboutte, D. Developmental Disabilities, 45, 284–293.
(2010). Sexual behavior in male adolescents and young adults Van Bourgondien, M. E., Reichle, N. C., & Palmer, A. (1997). Sexual
with autism spectrum disorder and borderline/mild mental behavior in adults with autism. Journal of Autism and Devel-
retardation. Sexuality and Disability, 28, 93–104. opmental Disorders, 27, 113–125.
Koller, R. (2000). Sexuality and adolescents with autism. Sexuality Wolfe, P. S., Condo, B., & Hardaway, E. (2009). Sociosexuality
and Disability, 18, 125–135. education for persons with autism spectrum disorders using
Mehzabin, P., & Stokes, M. A. (2011). Self-assessed sexuality in principles of applied behavior analysis. Teaching Exceptional
young adults with high-functioning autism. Research in Autism Children, 42, 50–61.
Spectrum Disorders, 5, 614–621.
123