Why sexuality education? If asked, most adults would likely agree that adolescence was a hectic time in their life; a time full of unexpected changes, conflicting emotions, desires and confusion. Most adults would also agree that this time in their life was also not easy for their parents. For individuals with Autism Spectrum Disorders (ASD) 1 and their parents, adolescence can be even more complicated. Until recently, issues related to negotiating developmental changes (e.g., puberty, social relationships, independence) and the biological processes associated with growing up have been neglected in the fields of ASD therapy and research. For example, sexuality education for youth and adolescents with developmental disabilities has received much less attention in the literature than is warranted (NICHYD, 1992). Even less work has been done to understand issues related to sexuality and sexual education for children and adolescents with ASDs (Henault, 2004, 2006; Koller, 2000). Though a few papers have raised the importance of understanding the sexuality of youth with ASD and have proposed instructional strategies, little empirical research has addressed these issues or has evaluated the effectiveness of educational approaches. Overall, the few studies that have been conducted on sexuality and adolescents with ASD strongly suggest the need for effective and appropriate sexuality education not only to prevent exploitation and problematic behaviors, but also to promote healthy sexual development (Hellemans, Colson, Verbraeken, Vermeiren & Deboutte, 2007; Stokes & Kaur, 2005; Stokes, Newton, & Kaur, 2007). Adolescents with ASDs, afterall, lack sexual knowledge compared to their typically developing 1 i.e., autism, Asperger syndrome, Pervasive developmental disorder not otherwise specified
peers. This is due largely to limited access to available and appropriate educational resources (Koller, 2000) and the lack of a peer group. In addition, only two studies have investigated the concerns of parents of youth with ASDs regarding issues of sexuality and sexual behaviors (Ruble & Dalrymple, 1993; Stokes & Kaur, 2005). 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). 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. Though the issues have not yet been explored in the literature, individuals with ASDs may be at an even greater disadvantage than other individuals with developmental disabilities due to the core difficulties they experience with social reciprocity and social understanding. For these reasons, risk of exploitation may also be higher; recognizing red flags of dangerous situations and interpreting the thoughts, feelings, intentions, and behavior of others can be particularly challenging for individuals with ASDs. Youth with ASDs present with unique challenges that are relevant for the interpretation of behavior and for teaching about sexuality. Specialized interventions are no doubt necessary, considering the sensory issues, social deficits, restricted interests and repetitive/self-stimulatory behaviors observed in many children on the autism
spectrum. In addition, a child s learning style is also important to consider when selecting appropriate educational strategies. For persons with ASDs, curricula may need to emphasize visual supports as well as specific plans for skill generalization. Parents of youth with ASDs, like all other parents, need to be able to have an open dialog with their children about sexuality. Being able to address the additional issues that may arise given that their child has an ASD makes parent education and training one of the most important steps in developing a youth s healthy sexuality. Our research study: Our research program is the first to develop and evaluate a group parent education curriculum that not only targets the needs of youth with ASDs in terms of sexual education, but also the needs of their parents with respect to decreasing anxiety and increasing comfort and competence in addressing their child s sexual development. Participants in our program were recruited from the Fay J Lindner Center for Autism, NS-LIJ Health System and AHRC Nassau, and through community advertisements. Interested families were eligible to participate if after two pre-group visits it was determined that their child met criteria for an ASD diagnosis and had a verbal IQ score of 65 or greater. Parents completed measures that assessed their comfort level with the topic of sexuality, and a variety of issues related to parenting and sexuality including: feelings of competence and acquired skills in teaching and addressing issues that might arise related to sexual development and learning, their knowledge of the topic, acceptance of their child s sexuality development, and
experience to date. Parents also completed measures about their child s social behavior in addition to establishing goals (specific, objective, measurable) that they wanted to accomplish during the group and during the three-month post-group phase. The group curriculum. In order to ensure that families shared similar experiences with their children, assignment of parents to each 10-week group was based on their child s age (12-15 or 16-18) and their child s verbal intellectual ability (IQ score 65-84 and 85+). Each parent group met once a week for 90 minutes over the course of 10 weeks. Groups were led by a psychologist and psychology interns. During the first session, parents were given a group manual which had been developed and modified based on a series of previous pilot studies. The manual included outlines for each class and in depth information about the topics that were going to be discussed that week. Home assignments were also included, as were resources and recommended readings. The first half of the group (first five classes) was developed for parents to get to know each other and better understand themselves and their own thoughts, beliefs and experiences regarding sexuality. Parents discussed experiences, hopes and fears for their child s future, beliefs about sexuality and disabilities, and values related to sexuality. They also learned about broadly defining sexuality to encompass more than sex. Building blocks for healthy sexuality and parents roles in their child s sexuality education and learning were also discussed. The second half of the group (last five classes) was developed to cover specific topics that have been raised both in the literature and by parents as essential for youth healthy sexuality
development. These included topics such as the body, pubertal changes, personal hygiene, public versus private, personal space and boundaries, self-pleasuring, safety and abuse prevention, and romance/relationships. Parents were educated about teaching methods and strategies for addressing each topic. In addition to activities completed during group, parents completed home activities, either independently or with their child. Home activities included reading assignments, thought provoking questions, short writing assignments, and parent-child discussions that all expanded on information that was presented in group. Collecting data from parents. Research measures were collected throughout the ten week group, after completion of the group, and at a 3-month follow-up session. Parents completed ratings of their comfort level during sessions 1, 4, 7, and 10 of the group, at the post-group visit, and at 3-months post group. This measure asked parents to rate their comfort in discussing their child s sexuality within the group, with their child, with their child s immediate family, with personnel at their child s school and with their child s health care provider. With assistance from the group facilitators, parents set a number of goals at various times during the group. Two goals were set before the group started, and interim progress was assessed for these goals during session 5 (mid group). During this session, parents had an opportunity to set two additional goals after having been in the group for a number of weeks and perhaps having developed a better sense of both their child s and their own learning needs. During the postgroup session, progress towards these four goals was assessed. Parents were given a final
opportunity to set two additional goals to be assessed at the 3 month follow up session. In total, parents were able to set six goals during the group. Parents completed the Parenting and Sexuality Scale questionnaire before group, at the end of group, and at the 3-month follow-up session. During the last session, parents also completed a general evaluation form which asked about overall impressions of the group and whether parents felt they met their general goals for participation. Results of the study. In total, 20 families (parents of 5 girls, 15 boys) participated in one of four 10-week groups. Of these 20 families, 5 children had a diagnosis of High Functioning Autism, 6 had a diagnosis of Asperger s Disorder and 9 had a diagnosis of PDD-NOS. The following research findings are of note: 1. Parents self-reported comfort level in discussing and thinking about sexuality and their child increased significantly across all contexts from pre-group to post-group. 2. From pre- to post-group, parents also reported expected changes on the Parenting and Sexuality Scale in the areas of acceptance, skill, knowledge, experience, and competence. Greatest gains were demonstrated in the areas of increased knowledge and skill. 3. Setting specific, objective, and measurable goals that were achievable over the course of the group and the follow-up period was challenging for most parents. Vague, loosely defined goals were frequently set, such as to be successful in his relationships. This
was unexpected, yet it provides important information for assisting parents as part of group educational curriculum. 4. Parents also made significant progress towards meeting the individualized goals they had set with the assistance of the facilitators before the beginning of the group. Examples of goals included: to share with other parents, to go to her first gynecology appointment, to shower on a regular basis, to learn how to talk about masturbation. 5. Of the 20 families who participated, 13 indicated that yes, they had accomplished their overall objectives for being in the group, whereas 6 families indicated very much so. Only 1 family reported that they accomplished their goals somewhat. Overall, parents reported increased comfort, knowledge, skill, acceptance, competence and the ability to identify and work towards specific goals for themselves and their children. We are hopeful that the participating families acquired a lasting set of skills and knowledge that will assist them in their journey through adolescence long after their participation in our study has ended. Discussion of the project. Our research findings strongly support the need for education related to sexuality development and learning for parents of youth with ASDs by demonstrating that a specialized group curriculum can help increase parents comfort, knowledge and sense of competence. Parents with this experience can facilitate better communication with their child and with their child s educational team and physician, thus making it easier to face the challenges and questions that
arise during puberty. With a proactive approach, crises and problematic situations are avoided and healthy development is promoted. We hope that we can continue our Growing Up with ASD research program and further expand on our current study. As part of future projects we would like to address problematic sexual behavior and programming for youth with limited verbal abilities. We would also like to evaluate the effectiveness of a curriculum which includes groups for both parents and their teen. We are delighted to have had the support from the Organization for Autism Research to pursue applied research in the field of sexuality and ASDs. We are also extremely grateful to all the families who have participated in our groups and who have provided wonderful feedback on revising our group curriculum. Selected References 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. Hénault, I. (2006). Asperger s syndrome and sexuality: From adolescence through adulthood. London: Jessica Kingsley Publishers. Henault, I. (2004). The sexuality of adolescents with Asperger Syndrome. In L.H. Willey (Ed.)., Asperger Syndrome in Adolescence. Living with the Ups, the Downs, and Things in Between. (pp. 69-97). London: Jessica Kingsley Publishers. Koller, R. (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18, 125-135.
Lang, M. J. (2005). Adolescent sexuality: Understanding the physiological changes and psychosocial challenges facing the adolescent with autism. Advocate, 3, 22-26. Ruble, L.A., & Dalrymple, N.J. (1993). Social/sexual awareness in persons with autism: A parental perspective. Archives of Sexual Behavior, 22, 229-240. Stokes, M. A., & Kaur, A. (2005). High-functioning autism and sexuality: A parental perspective. Autism, 9, 266-289. Stokes, M., A., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1969-1986.