J Autism Dev Disord DOI 10.1007/s10803-014-2146-2
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 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. Keywords Sexuality Sexuality education Parent–child sexuality communication Puberty Parents Adolescence Adulthood
Introduction Autism spectrum disorders (ASDs) affect one in 68 children in the United States (Centers for Disease Control and Prevention 2014). While early detection and intervention can improve cognitive, social, and communicative functioning (Dawson 2008), core symptoms typically persist into adolescence and adulthood (Shattuck et al. 2007). While considerable research has focused on promoting 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: [email protected]
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 relationships 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, inappropriate 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, bidirectional 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 sexualityrelated 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
123
J Autism Dev Disord
their child are lacking. The primary purpose of the current study was to better understand the types of sexuality-related 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 communication 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. Parents 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 indicated ‘‘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 average 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 B 40). Regarding
123
ASD symptoms, most youth (89.4 %) fell within the ‘‘Moderate’’ or ‘‘Severe’’ range on the Social Responsiveness 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; MHF = 77.50, SD = 9.34; MLF = 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 interference 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 containing questions about parent and child demographics, child ASD symptoms, and parent–child sexuality communication. 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, relationships, consent and coercion, and sexual health (see Table 2). Items for the survey were chosen based on previous 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 Table 1 Parent-reported sexual behaviors displayed by adolescents with autism spectrum disorders (N = 190a) Has your child ever…
High functioning n (%) Yes
No
Low functioning n (%) 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? Intruded on other’s privacy? (e.g., entered rooms without knocking, asked inappropriate questions)
27 (20.8) 54 (41.5)
94 (72.3) 72 (55.4)
9 (6.9) 4 (3.1)
6 (10.3) 25 (43.1)
50 (86.2) 27 (46.6)
2 (3.4) 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) 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)
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)
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 parent 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; MHF = 14.54, SD = 1.95; MLF = 14.42, SD = 2.00) or gender (X2 (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, parents of HF children covered a greater number of topics than parents of LF children (R2 = .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
123
J Autism Dev Disord Table 2 Sexuality education topics covered by parents (N = 190a) Which topics have you covered with your child?
High functioning n (%)
Low functioning n (%)
Yes
Yes
No
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 Public and private discussion topics
126 (96.9) 119 (91.5)
4 (3.1) 11 (8.5)
54 (94.7) 38 (67.9)
3 (5.3) 18 (32.1)
Sexual abuse prevention/consent What kinds of touch are okay/not okay How to report sexual abuse
124 (95.4)
6 (4.6)
52 (91.2)
5 (8.8)
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)
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
Puberty/reproduction 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)
113 (86.9) 84 (64.6)
17 (13.1) 46 (35.4)
34 (60.7) 18 (31.6)
22 (39.3) 39 (68.4)
Relationships What qualities are important in choosing close friends Dating and marriage 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)
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 How well birth control can prevent pregnancy
82 (63.6) 56 (43.8)
47 (36.4) 72 (56.3)
15 (26.8) 8 (14.3)
41 (73.2) 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)
Sexual health/prevention
Sexuality Sexual slang terms that people might use Homosexuality/people being gay Sexuality as a positive aspect of self
69 (53.1)
61 (46.9)
18 (31.6)
39 (68.4)
107 (82.9)
22 (17.1)
22 (38.6)
35 (61.4)
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
J Autism Dev Disord Table 2 continued Which topics have you covered with your child?
High functioning n (%)
Low functioning n (%)
Yes
Yes
No
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 NSTC as the dependent variable. Analyses were run separately 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, R2 = .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 discussed over and above the variance accounted for by child age (F(2, 126) = 4.344, p = .015, R2 = .065, R2 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, R2 = .064, R2 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, R2 = .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 sexuality 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 covered 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 sexuality-related topics with their child, suggesting that specific 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 contrast, parents of LF youth appeared to cover basic topics
123
J Autism Dev Disord
(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 information 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 independently verified. On the other hand, parents may be more likely to respond honestly about their sexuality communication 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 Caucasian, married mothers who tended to be well educated); thus the results may not generalize to the broader population of parents of children with ASD. Fourth, no comparison 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 prevention, sexual decision-making). This pattern may reflect topics that most parents (regardless of ASD diagnosis) discuss when providing sexuality education to their children. 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 differences, though gender was included as a predictor in analyses. Research on parent–child sexuality communication in the families of typically developing children has consistently 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 conversations between parents and youth with ASD. Finally,
123
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 understand 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 developmentally 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 communication programs that consider the child’s level of intellectual 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 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 communication 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 developmental 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 Developmental 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 decisionmaking 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 Developmental 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.
123
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 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. Keywords Sexuality Sexuality education Parent–child sexuality communication Puberty Parents Adolescence Adulthood
Introduction Autism spectrum disorders (ASDs) affect one in 68 children in the United States (Centers for Disease Control and Prevention 2014). While early detection and intervention can improve cognitive, social, and communicative functioning (Dawson 2008), core symptoms typically persist into adolescence and adulthood (Shattuck et al. 2007). While considerable research has focused on promoting 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: [email protected]
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 relationships 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, inappropriate 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, bidirectional 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 sexualityrelated 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
123
J Autism Dev Disord
their child are lacking. The primary purpose of the current study was to better understand the types of sexuality-related 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 communication 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. Parents 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 indicated ‘‘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 average 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 B 40). Regarding
123
ASD symptoms, most youth (89.4 %) fell within the ‘‘Moderate’’ or ‘‘Severe’’ range on the Social Responsiveness 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; MHF = 77.50, SD = 9.34; MLF = 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 interference 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 containing questions about parent and child demographics, child ASD symptoms, and parent–child sexuality communication. 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, relationships, consent and coercion, and sexual health (see Table 2). Items for the survey were chosen based on previous 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 Table 1 Parent-reported sexual behaviors displayed by adolescents with autism spectrum disorders (N = 190a) Has your child ever…
High functioning n (%) Yes
No
Low functioning n (%) 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? Intruded on other’s privacy? (e.g., entered rooms without knocking, asked inappropriate questions)
27 (20.8) 54 (41.5)
94 (72.3) 72 (55.4)
9 (6.9) 4 (3.1)
6 (10.3) 25 (43.1)
50 (86.2) 27 (46.6)
2 (3.4) 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) 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)
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)
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 parent 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; MHF = 14.54, SD = 1.95; MLF = 14.42, SD = 2.00) or gender (X2 (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, parents of HF children covered a greater number of topics than parents of LF children (R2 = .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
123
J Autism Dev Disord Table 2 Sexuality education topics covered by parents (N = 190a) Which topics have you covered with your child?
High functioning n (%)
Low functioning n (%)
Yes
Yes
No
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 Public and private discussion topics
126 (96.9) 119 (91.5)
4 (3.1) 11 (8.5)
54 (94.7) 38 (67.9)
3 (5.3) 18 (32.1)
Sexual abuse prevention/consent What kinds of touch are okay/not okay How to report sexual abuse
124 (95.4)
6 (4.6)
52 (91.2)
5 (8.8)
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)
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
Puberty/reproduction 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)
113 (86.9) 84 (64.6)
17 (13.1) 46 (35.4)
34 (60.7) 18 (31.6)
22 (39.3) 39 (68.4)
Relationships What qualities are important in choosing close friends Dating and marriage 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)
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 How well birth control can prevent pregnancy
82 (63.6) 56 (43.8)
47 (36.4) 72 (56.3)
15 (26.8) 8 (14.3)
41 (73.2) 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)
Sexual health/prevention
Sexuality Sexual slang terms that people might use Homosexuality/people being gay Sexuality as a positive aspect of self
69 (53.1)
61 (46.9)
18 (31.6)
39 (68.4)
107 (82.9)
22 (17.1)
22 (38.6)
35 (61.4)
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
J Autism Dev Disord Table 2 continued Which topics have you covered with your child?
High functioning n (%)
Low functioning n (%)
Yes
Yes
No
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 NSTC as the dependent variable. Analyses were run separately 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, R2 = .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 discussed over and above the variance accounted for by child age (F(2, 126) = 4.344, p = .015, R2 = .065, R2 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, R2 = .064, R2 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, R2 = .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 sexuality 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 covered 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 sexuality-related topics with their child, suggesting that specific 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 contrast, parents of LF youth appeared to cover basic topics
123
J Autism Dev Disord
(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 information 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 independently verified. On the other hand, parents may be more likely to respond honestly about their sexuality communication 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 Caucasian, married mothers who tended to be well educated); thus the results may not generalize to the broader population of parents of children with ASD. Fourth, no comparison 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 prevention, sexual decision-making). This pattern may reflect topics that most parents (regardless of ASD diagnosis) discuss when providing sexuality education to their children. 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 differences, though gender was included as a predictor in analyses. Research on parent–child sexuality communication in the families of typically developing children has consistently 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 conversations between parents and youth with ASD. Finally,
123
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 understand 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 developmentally 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 communication programs that consider the child’s level of intellectual 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 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 communication 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 developmental 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 Developmental 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 decisionmaking 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 Developmental 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.
123
