Sexuality refers to the total expression of who you are as a human being. Our sexuality begins in the womb and ends at death (Freud, 1986). Everyone is a sexual being, babies, children, teens, adults and the elderly. Sexuality is therefore experienced throughout the developmental lifespan. So why is social-sexual education for people on the autism spectrum and with other developmental disabilities (DD), still taboo?
The American Academy of Pediatrics states, “Sexual development is a multidimensional process, intimately linked to the basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive, and sharing thoughts and feelings” (2015). This is basic to the human experience. Because of the diagnostic criteria of autism, these are areas that often are challenging for people with autism spectrum disorder (ASD). It is therefore imperative that we provide supports.
Historically we know that people with DD were segregated by sex, forcibly sterilized, seen as either asexual (no interest in sex) or hyper sexual (deviants). There were laws prohibiting marriage, and group homes and families denying privacy and sexual expression. Myths, biases, fears, ignorance, inexperience, as well as erroneous information have sadly led to the violation of the sexual rights of people with disabilities. Sexual rights are human rights and at YAI, this is the foundation from which all our training, policies and practices evolve.
We explore sexual development in its broad, complete context highlighting the social aspects. The questions posed in many groups include: “How can I get a girlfriend/boyfriend? How do I get a date? What if she says no? How do I get a girl/boy to like me? What do I say to someone I like?” These are social skills that are needed and YAI teaches them through its social-sexual curriculum.
Because a person’s social-sexual development occurs throughout the developmental lifespan, every significant person along the way has the opportunity to have a negative or positive impact. Sexuality includes values, communication, self-image, gender, socialization, physical expression, body image and personality. If we are committed to helping the people we support to lead person-centered lives, make informed decisions and explore their dreams and wishes, then we absolutely need to actively encourage their social-sexual development.
We need to provide support to change negative messages received from peers (especially in high school), media (lack of representation), unrealistic situations, pornography and abuse.
We expect people with ASD to exhibit skills they were never taught. If we see that the skills are not there, or that the ones displayed are “maladaptive,” we need to understand that it’s learned behavior and that teaching is needed. Teach the skills to set the person up for success. Be proactive instead of reactive.
I was recently at a residence conducting a staff training on sexuality and values. A staff member shared her experience of supporting one of the residents as he practiced his pick-up lines! Yes, we need to teach. By teaching we are supporting.
Executive functioning and Theory of Mind are two areas where people with ASD have challenges. Executive functioning includes skills such as organizing, planning, sustaining attention, and inhibiting inappropriate responses. Theory of Mind refers to one’s ability to perceive how others think and feel, and how that relates to oneself. Both of these issues can impact the behavior of people with ASD, especially their social-sexual lives.
Stephen M. Edelson of the Autism Research Institute states, “By not understanding that other people think differently than themselves, many autistic individuals may have problems relating socially and communicating to other people. That is, they may not be able to anticipate what others will say or do in various situations. In addition, they may have difficulty understanding that their peers or classmates even have thoughts and emotions, and may thus appear to be self-centered, eccentric, or uncaring.” So we need to teach.
Parents are the first sex educators. I have often found that their main concerns are: fear of abuse, fear of their child being taken advantage of, and due to experiencing chronic sorrow, they do not see their child as a sexual being. They are uncomfortable having these discussions and they tend not to see sexuality in its broad definition; instead, seeing/hearing S-E-X in the word “sexuality.” An example is proactively preparing children for puberty.
Many parents do not realize that children with DD generally mature biologically the same as those without DD. So parents need to concretely, and in a multisensory manner, teach children about the physical changes that their body will go through. This needs to begin a few years before the onset of puberty so that the child can have time to learn. At YAI, we offer parent workshops that help them to prepare for and better support their child through what can be a very confusing, socially awkward and scary time. We help parents understand how social-sexual training teaches their child how to let love in and keep abuse out.
People with ASD have challenges with executive functioning. This is important for educators to keep in mind, as they support students in social sexual development. From elementary through high school, elements of sexuality can be taught and reinforced by incorporating them in various subjects. Topics such as a positive self-image, personal pride, celebrating differences and building self-confidence are helpful to the social sexual development of a child.
Develop a comprehensive social-sexual policy to serve as a guide for everyone in the agency. This should include the commitment of the agency and responsibilities of its staff members. There should also be a plan of how the policy will be implemented. At YAI, this is addressed through the agency’s Relationships and Sexuality Policy and its Sexuality Rights and Advocacy Committee. An approved social-sexual curriculum should be taught by trained staff. This curriculum needs to be fluid and adapt to the time and needs of the people being supported.
YAI holds a monthly networking and social skills group called the YOU & I Program. The focus is on skill development. Some of the requested group topics are: How to deal with rejection or anxiety for that initial conversation, Social etiquette around dating – who calls or pays? Where do you go? How long should a date be? What’s OK and what’s not? Some other topics are: How to make a friend; what is flirting; how and where to flirt; navigating levels of intimacy; using dating sites; safe use of social media; how to make small talk; or deepen and maintain a relationship.
Self-advocates were asked what they wish they had known about sex. One person wished that they were given more of an explanation. Another wished that they were given an introduction to puberty. One young lady said, “If I had known everything that I know now, I probably would have waited” (IMPACT, Spring/Summer 2010).
If we do not support the social-sexual development of people with ASD (from babies to seniors), then we are failing to provide person-centered services. We are not helping them to make informed decisions in their social lives and, in fact, we are promoting keeping them in social darkness. We are in essence continuing to deny them the opportunity to experience a basic biological need – to love and be loved, safely.
The overall goal of social-sexual education is to foster the growth of knowledge, skills, attitudes and lifelong behaviors that will enable the individual to make informed decisions and to assume responsibility for healthy living and personal well-being. For this to be achieved, there must be collaboration among parents, schools, service providers, and communities (places of worship, businesses, governments) to develop healthy relationships and provide a safe environment in which people with disabilities feel free to practice these skills. By ignoring this topic, we are doing a disservice to people with autism and other developmental disabilities.
Consuelo Senior, LMSW, is Assistant Coordinator of Sex Education for YAI. She is also an Adjunct Lecturer, CUNY-City College of New York-Center for Worker Education. For more information about YAI’s trainings, visit Yai.org/training.
Edelson Stephen, M (n.d) Theory of the Mind https://www.autism.com/understanding_theoryofmind#sthash.pQvaYL8g.dpbs
Henault Isabelle. (2006) Asperger’s syndrome and sexuality. Canada. Jessica Kingsly Publishers
Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities. Minneapolis: University of Minnesota, Institute on Community Integration. (Spring/Summer 2010)
Kowalski T. (2002) The source for asperger’s syndrome. LinguiSystems Inc.
Moyer, Sherry A (2009) The eclipse model. Autism Asperger Publishing Co.
Murphy Nancy A ,Elias, Ellen Roy. (2006) Sexuality of Children and Adolescents with Developmental Disabilities. American Association of Pediatrics.