Shana Nichols, Ph.D., is a licensed clinical psychologist and researcher at the North Shore/Long Island Jewish Fay J. Lindner Center for Autism. She has worked in the field of autism spectrum disorders and child development for over 10 years and currently specializes in adolescence and growing up, dual diagnosis and mental health issues, and the experiences of girls with autism spectrum disorders. Dr. Nichols was awarded a 2006 OAR Applied Research Grant the focus of which forms the basis for this article.
Like their typically developing peers, youth and adolescents with developmental disabilities experience puberty, emotional changes, and sexual feelings, making sexuality education a critical component in their overall education. Yet sexuality education has received little attention in the literature (NICHYD, 1992). Even less work has been done to understand issues related to sexuality and sexual learning for children and adolescents with autism spectrum disorders (ASD) (Koller, 2000). A number of myths related to how people think about sexuality in individuals with developmental disabilities have contributed to the paucity of empirical work and programs aimed towards understanding how youth with ASD and other developmental disabilities learn about sexuality and towards developing appropriate instructional strategies and curricula (Kempton, 1993). Such myths include:
Parents are a child’s most important educator. As such, if parents of children with ASD are to foster healthy development in their children, they must understand the issues involved in sexuality for youth with ASD. Professionals writing about sexuality and developmental disabilities have advocated strongly for the development of resources for families (Couwenhoven, 2001a, 2001b; Schwier & Hingsburger, 2000; SIECUS Report, 2001) and have highlighted why sexuality education is important throughout development:
Though the issues have not yet been explored in the literature, individuals with ASD may be at an even greater disadvantage due to the core difficulties they experience with social reciprocity and understanding. Recognizing the “red flags” of dangerous situations and interpreting the thoughts, feelings, intentions, and behavior of others can be particularly challenging for individuals with ASD, which may make the risk of exploitation higher.
Thinking about sexuality education is not easy. Understandably, parents of children with ASD may be apprehensive about teaching related to sexuality or are unsure how to respond to their child’s emerging sexual behaviors, particularly if the child is engaging in inappropriate behaviors (e.g., violating boundaries). It is generally accepted that sexuality needs to be taught within the context of human relationships (SIECUS, 2001) and that parents are the most important and best sex educators for their children (Gossart, 2002). Professionals working with families of youth with ASD need to better understand parents’ concerns, fears, and hopes and how best to support them in educating their children and handling difficult behaviors that might emerge at home, school, or in the community. Youth with ASD present with unique challenges—sensory issues, difficulties with social understanding, and restricted interests/repetitive behaviors, for example—that are relevant for how we interpret sexual behavior (or behavior incorrectly considered to be sexual), intervene as needed, and select appropriate educational strategies, such as providing visuals for strong visual learners.
Only three studies have investigated the concerns of parents of youth with ASD regarding issues of sexuality and sexual behaviors (DeMeyer, 1979; Ruble & Dalrymple, 1993; Stokes & Kaur, 2005). In their study, Ruble and Dalrymple collected information from parents of individuals ranging in age from 9 to 39, but there was little discussion of differences in behavior, education, and concerns across age. Stokes and Kaur noted that specific parental concerns about their child (e.g., misinterpretation of their child’s behavior) differed between parents of youth with high-functioning autism and parents of typically developing youth. Nichols and colleagues (manuscript in preparation) have noted that parents of youth with ASD may have unique concerns, about issues such as obsessions, sensory difficulties, youth fears of growing up/puberty, and social naiveté that are important to understand and address.
Although some papers and books have raised the importance of understanding the sexuality of youth with ASD and proposed instructional strategies (e.g., Dalrymple, Gray, & Ruble, 1991; Ford, 1987; Gray, Ruble & Dalrymple, 1996; Henault, 2005; Newport & Newport, 2003), little research has addressed these issues or evaluated educational approaches to date. Only a single intervention-focused paper has been published, describing a parenting skills-enhancement group related to sexuality for parents of adolescents (10-19 years) with ASD (Meister, Norlock, Honeyman, & Pierce, 1994). However, no data were reported regarding outcomes. Working with parents concerning their child’s sexuality is a very sensitive aspect of a parent-professional relationship (Kempton, 1993). Better understanding of parents’ beliefs, wishes, and concerns and how best to meet families’ needs will facilitate a shared view towards change founded on a trusting relationship (Johnson & Kempton, 1981). Beginning to consider how to foster a child’s learning and help parents to respond to challenging behaviors is an important step in developing parents’ roles in their children’s sexuality education.
In the only study to look at outcomes of programs for youth, Henault, et al., (2003) evaluated the effectiveness of a general socio-sexual education program for older teens with Asperger Syndrome. The study found that social skills increased and inappropriate behaviors decreased, changes that continued to be observed at the three-month follow-up.
In contrast to the lack of information on youth sexuality, some (though still limited) studies on sexuality have been conducted with adults with ASD. This small body of literature to date suggests that adult outcomes may be poor (though professionals working in the area strongly believe that this can be changed). Self-esteem and mood are affected, and self-injurious behaviors can arise, as can numerous sexual behavior problems, which may result from a lack of education. Vulnerability to abuse continues, and the risk of legal issues increases as behavior may be misinterpreted (Hingsburger, Griffiths, & Quinsey, 1991. In order to be proactive and preventative, empirical studies of sexuality in individuals with ASD need to be extended downward, and educational programs for parents and adolescents need to be developed and evaluated. To understand sexual development, the emergence of behavior problems, and how best to educate youth about sexuality, professionals need to work closely with parents and develop and evaluate services best suited for families’ needs.
Many people think of sexuality as “sex,” when, in fact, sexuality involves much more than biology and reproduction. The Sexuality Information and Education Council of the United States (SIECUS) defines it this way:
“Human sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals. Its various dimensions involve the anatomy, physiology, and biochemistry of the sexual response system; identity, orientation, roles, and personality; and thoughts, feelings, and relationships. Sexuality is influenced by ethical, spiritual, cultural, and moral concerns.”
The definition of sexuality is particularly important when considering sexuality education for individuals with developmental disabilities. Sexuality is a natural part of who we are as humans, and how sexuality is conceptualized for individuals with ASD depends on a number of factors including their cognitive abilities; language; adaptive, self-care, and social skills; and interest. It is equally important to note that sexuality education differs throughout childhood and adolescence. For example, young children learn about gender, body parts, privacy, and love, while older children learn about friendships, personal safety, and puberty.
In our OAR-funded study, we emphasize the importance of educating parents in how to teach their children about puberty and sexuality and to feel competent in doing so. This program is the first to evaluate the effectiveness of a parent curriculum in targeting not only the needs of youth with ASD regarding sexuality development, but parents’ needs, including reducing stress and increasing a sense of competence in dealing with this difficult set of issues.
Objectives
The primary objective of our study is to examine the effectiveness of a parent group education intervention in (1) increasing parents’ comfort level in addressing/talking about issues related to their children’s developing sexuality, (2) increasing parents’ sense of competence in teaching their children about sexuality, (3) reducing stress reported by parents regarding issues related to puberty and growing up, and (4) facilitating implementation of teaching goals and behavior management approaches related to sexuality.
Participants
We are recruiting the parents of 24 young people (ages 13-18) with ASD. Measures will assess parent stress and competence, parent knowledge of sexuality and developmental disabilities, and youth sexual behavior and knowledge. All participants will have both individualized and general goals.
The Curriculum
Our 10-week parent group involves didactic teaching, parent sharing of experiences, parent support, and sharing of resource information. Weekly homework exercises and readings are provided for the parents to complete independently or with their children, and are reviewed during the following week. The parent group will participate in two sets of five sessions— the first five encompass (1) an introduction to sexuality issues for youth with autism spectrum disorders, (2) parent exploration of hopes and fears and their own sexual learning experiences, (3) goal setting, (4) learning about sexual development during adolescence, (5) an overview of how to communicate with their children about sexuality, and (6) an overview of how to develop a sexuality education plan and create a sexuality learning team (e.g., school, family, and PCP). The second set of sessions involve teaching about specific topics— privacy, hygiene, masturbation, affection, personal boundaries, dating/relationships—depending on the age and cognitive ability of the young people, monitoring of progress, and teaching about abuse prevention.
Preliminary Findings
Data collected during the pilot group sessions demonstrated increased comfort for parents with the topic of sexuality. Though the goals varied greatly across the participating families, goal attainment ratings (0-5 scale) were high for parents. Common themes arose for issues facing youth with ASD, such as difficulties with privacy and hygiene, anxiety, and intensity of sexual interests. Qualitatively, parents discussed that their overall comfort level with the topic increased greatly from the first class and that they now felt much more prepared for what to expect as their children develop. Through completion of questionnaires and in group discussion, some parents were able to generate ongoing goals for work they would like to do with their children, like learning about dating and privacy rules. They have also demonstrated interest in learning about specific topic areas, teaching strategies, and approaches to communicating about sexuality (e.g. creating teachable moments when your child isn’t interested in asking you questions, helping with anxiety/fear about growing up). In the group evaluation, all parents rated their experiences and learning as “helpful” and “very helpful” for statements such as:
The mother of a 14-year-old girl with high-functioning autism wrote:
I have learned that my child has a future—a positive future—with regard to a sexual relationship and marriage. I was much more fearful of the prospects before the class. Now I look forward with hope and excitement, watching my daughter grow up. This, I hope, will translate to a more helpful support for her.
Revisions from the pilot groups have enabled our team to better focus on parents’ needs as a group and as individuals with differing goals, hopes, and concerns. Those revisions have also helped us to better evaluate the outcomes. Overall, we hope that by learning how to apply strategies that we know are effective in teaching youth with ASD (e.g., visuals, social stories, repetition of concepts, role-playing), parents will develop “tool kits” to help them feel “comfortable, competent, and confident” with the often anxiety-provoking idea that their child is growing up.
Information obtained from the current phase of the study will be extremely valuable in understanding how best to assist parents in meeting the learning needs of their children with respect to issues related to sexuality and growing up. Results from this study will also provide important information about sexuality development and the sexual behaviors of youth and adolescents on the autism spectrum, and contribute to the development of best practices in addressing issues related to sexual development for youth on the autism spectrum. Outcome data will also serve as a starting point for much needed future program development such as development of concurrent youth groups to run in conjunction with a parent curriculum, development of school-based sexuality education groups, and a school-based consultation model for sexuality issues.
Couwenhoven, T. (2001a). Sexuality education: Building a foundation for health attitudes. Part one. Disability Solutions,4(5), 1-13.
Couwenhoven, T. (2001b). Sexuality education: Building a foundation for health attitudes. Part two. Disability Solutions,4(6), 1-116.
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Nichols, S., Blakeley-Smith, A., Raitano-Lee, N., Hepburn, S., & Reaven, J. (in preparation). Growing up on the Autism Spectrum: Youth Sexuality Development and Parents’ Concerns, Hopes, and Educational Needs.
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