It has become commonplace to read about or hear stories about issues related to people with autism spectrum disorders (ASD). Healthcare, education, mental health and social services offer options for children that did not exist years ago. As these children grow up, their needs change. Older teenagers and their families are facing challenges in the arena of employment, daily living and social relationships. While some families are reticent to recognize it, transitioning into adulthood also includes readiness to form and maintain relationships, engage in dating and sexual activity.
Misconceptions about their interest in and need for social and sexual relationships have often served to further isolate young adults and adults with ASD from their typically developing peers; put them at risk for sexual victimization; and deprive them of the opportunity to experience rich, intimate, emotional relationships. Parents and caregivers are often reluctant to discuss sexuality and relationships with their children for a variety of reasons. They themselves may be uncomfortable talking about body parts and reproductive organs. Some have the misconception that and fear that talking about sexuality and reproduction will encourage their children to experiment with sex. Whether or not parents and caregivers teach their children about healthy relationships, it is inevitable that they will receive information from one source or another and that they are likely to misinterpret the information they receive.
Recognizing the need to educate teens, young adults, adults and their parents, Westchester Jewish Community Services (WJCS), through a grant from Autism Speaks received training from Shana Nichols, PhD, and Samara Pulver-Tetenbaum, PhD, of ASPIRE Center for Learning and Development in Melville, NY to develop curricula on healthy relationships and sexuality. At the 2010 Hilibrand Autism Symposium at UJA-Federation of New York, Dr. Nichols stressed that “…sexual development, learning, and education are essential for young adults with ASD. Social skills are the building blocks of sexuality.” Additionally, she stressed, “It’s critical kids learn skills to make them less vulnerable, and what to do if something happens so they don’t stay quiet.” It was this speech of Dr. Nichols that inspired WJCS to start our Healthy Relationship and Sexuality Initiative.
The WJCS initiative is based on an understanding that whether or not the individual has autism, they will move through the same developmental stages as their typically-developing peers to become sexually mature adults. Our goal was to obtain the training needed to develop specialized programs to work with teens and young adults with autism to help them learn about healthy relationships, appropriate expressions of sexuality and about social boundaries including those related to sexuality and dating.
Training for staff focused first on acknowledging each person’s level of comfort with the subject matter. We recognized the similarity between the interventions for teaching healthy sexuality and the interventions used for teaching other social and life skills. Through our training we broadened our knowledge base to understand the various components of healthy sexuality, even for those who are not interested in being sexually involved or in having a romantic relationship.
With training completed, WJCS staff embarked on creating curriculum and workshops in three specific programs: a recreational/social program for teenagers and their parents, a supported social group for adults age 18-30 with ASD, and to adults in an independent living program. The group members were active participants in the process of identifying their learning needs and priorities. Many were open with their pre-group questions including, “What does a kiss feel like?” and, “Is holding hands dangerous?”
The basic curriculum is broken down into core topics including understanding the body, social communication and relationships, and personal safety and boundaries. Every group covered each of these topics, but relative to the developmental level of the participants. Questions raised by group members were incorporated into the curriculum.
Across all groups, members were uncomfortable yet eager to learn. They were curious about all aspects of dating; where to meet people to date, how to tell if someone was interested, and the logistics of a date. They were more reluctant to work on issues related to hygiene and actual behavior on a date, but were able to recognize that they needed to master these topics in order to be successful in dating. Using television clips and pictures alleviated the pressure of disclosing personal experiences (lack of them).
Lessons learned: The groups tended to be interested in more basic material than anticipated. While the parents of the teenagers had anticipated that they would want to learn more about anatomy and sexual activity, the group members actually reported that they were much more interested in dating and felt like they were fairly far away from being ready to be involved sexually with others.
Initially we thought it would be necessary to separate the adult independent living group into those who identified as being sexually involved or wanting to be from those who were not to better address the interests and learning needs of each group. Although some of the group members did identify as not being interested in sexual involvement for themselves, they were interested in learning and talking about safe sexual activity with their peers and felt that it was important to have these discussions as a community.
In each of the groups we also found that prior to any training from us, the group members could verbalize an understanding of some topics, but when asked related questions or to respond to hypothetical situations, their confusion was evident. They may have received some form of education about healthy sexuality in their school programs and from their families, but could not connect the factual to practical application of concepts.
This was especially apparent when talking about boundaries and safety. Many group members could articulate safety rules about how to respond to strangers, but often had an inaccurate and rigid definition of the who a stranger was; such as thinking that only men could be strangers. Because we could not anticipate and plan for each of these knowledge gaps or misunderstandings, we found that the only effective way to see if the group members had mastered the material was to role play and take trips into the community to practice.
We knew there was a need in the community for this special type of education and this was confirmed by parents and participants. A parent of one of the program participants said, “My dream was always for my son to thrive in the community. I always worried about him being safe; I’m grateful to WJCS for providing a group for him to learn and share with others.” Another parent stated, “I never realized how uncomfortable I was with discussing relationships and sexuality.” A program participant said, “The group helped me handle breakups and relationships and gave me coping skills so when things don’t go as I planned I can handle it.”
The programs and workshops were well-received by the professional community as well. We were contacted by several agencies about how training for themselves and how they could help parents talk to their children about these issues. In response to these requests and to encourage other agencies in Westchester County and the surrounding areas to do this work, the WJCS Autism Family Center hosted a half-day conference on healthy sexuality and relationships in December 2011 with Dr. Pulver Tetenbaum as the keynote speaker. There were over 100 participants representing the professional community as well as parents/caregivers.
With the support of the ASPIRE Center, WJCS has been able to move from acknowledging the need for a program in Westchester County that addresses healthy sexuality to becoming a lead social agency in providing workshops and groups. To date, program participants are more comfortable in understanding the complexity of relationships, they have increased their ability to protect themselves from exploitation, they have learned how to make responsible decisions regarding social and sexual relationships. They have been empowered to seek advice and ask questions from others in their trusting circles. They have increased their capacity to become part of the fabric of their communities, living, working, socializing alongside their typically-developing peers.
Transitions in life are often complicated and filled with unknowns. For our clients, consumers, family members with autism spectrum disorders, it is often an overwhelming, and sometimes a scary process. There are so many unknowns, so many decisions to make. With helpful guidance and support, we can make this process more manageable and successful. Transition planning in general, and specific to developing healthy relationships is a long-term process that requires planning and responding to the changing needs of the individual. Successful work in the area of healthy relationships incorporates a strong knowledge base, comfort with the topic(s), and a person-centered approach. As did WJCS, creating the opportunity for individuals with autism spectrum disorders to learn, think aloud, share with others, question and experience helps ensure the safety and well-being of our clientele.
Patricia L. Grossman, LCSW, is Director and Kari Y. Phillips, LCSW, is Assistant Director of Outpatient Services for Persons with Developmental Disabilities at WJCS. For more information, please visit www.wjcs.com.