Sexuality education for parents of young people with Down Syndrome

By Kim Cavill

When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was…let’s call it polite disinterest.

That is why my heart leapt when I heard about Katie Frank, who works at the Adult Down Syndrome Center in Park Ridge, and she was kind enough to spend an hour with me to talk about her work in sexuality education for parents of young adults with Down Syndrome.

Katie has a PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was “Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome.” She has been the primary investigator on multiple research studies including individuals with DS and/or their families, and has had her work published in peer reviewed journals. I spoke to her about sexuality education for parents of young people with Down Syndrome.

I asked Katie where she usually starts with parents and carers of young people with Down Syndrome in regard to sexuality education. She said she likes to start with questions. Parents tentatively bring up the subject of sexuality education for many different reasons. Rather than make assumptions, Katie seeks out more information by asking questions like, “Why are you thinking about this right now?” Parents’ answers range from issues around public vs private behaviors, to discomfort with self-stimulation. Others do not how to respond when their child declares an intention to get married. Despite the wide variety of circumstances that lead families to Katie, research shows that most parents avoid these conversations because they’re scared, and understandably so. Katie reassures parents that sexuality education is not just about sex. In fact, many times, it is not about sex at all. Frequently it’s about dating, relationship skills, needs for companionship, or general life goals. She also tells parents that sexuality education is not just a one-time conversation, but rather a habitual use of teachable moments to both gauge and add to a young person’s understanding.

Katie says that parents, not educators, should be the primary teachers of sexuality education. For many young people with Down Syndrome, schools and supportive service agencies are ill-equipped to teach sexuality education in a way that is tailored to individual understanding and learning needs. If a young person with Down Syndrome is in an inclusive classroom, the material is not necessarily presented in a way that maximizes their understanding. If a young person is in a special education room, the teacher is highly unlikely to be even the least bit comfortable teaching sexuality education. Therefore, Katie believes that parents are best positioned to be the primary teachers of sexuality education for their children.

So, where should parents start? Katie directed me to many helpful resources, which you can find here. Some of those resources include books written by the incomparable Terri Couwenhoven. The Adult Down Syndrome Center also offers in-person services for qualifying families. These services include monthly social skills workshops on topics like friendship, dating, and social awareness. The center also offers health services and consultations.

Katie is currently running a research study at the center for family-based sexuality education training for parents of young adults with Down Syndrome. The training is free for parents of young adults (ages 20-30) with Down Syndrome. The study will investigate the effectiveness of a family-based sexuality curriculum for parents of young adults with Down Syndrome. So far, Katie is pleased with the results of the study, which measures improvement in self-efficacy and attitudes around sexuality and healthy relationships, as well as increases in parent-child communication on sexuality-related topics. Participants must be able to communicate in English and be available to meet three times over a four week time frame for three hours (9 AM – 12 PM). A follow-up survey must be completed one month after the final training. It is offered at the Adult Down Syndrome Center in Park Ridge, IL, and there are several date options available through the summer and early fall (of 2017). Please contact Katie, or call 847-318-2303, if you are interested in participating.

When I worked in sexuality education for people with disabilities, many asked me why my job existed at all, implying that people with disabilities have no need for this information. That is simply untrue. Sexuality education includes information about puberty, social expectations, relationship skills, what is/is not legally permitted, body autonomy, and risk-management. Those topics are relevant to all human beings, regardless of whether they are typically-developing or not. The mechanisms for delivering that information and the level of detail required are the only things that change. I was very grateful to meet Katie, who is doing the important work of making sure families have access to the information and services they require to live healthy, fulfilled lives on their own terms.

Though I wish I could summarize all of Katie’s insight from the fascinating hour we spent together, I can at least leave you with this: