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March/April 2016 Issue

Children and Families Forum: Sex Ed for Young Adults With I/DD
By Sue Coyle, MSW
Social Work Today
Vol. 16 No. 2 P. 34

Sex. It's an important part of being human. It's an integral part of romantic intimacy. It's how we develop relationships and build our families. And it's terrifying—at least, it can be.

"How many of us are prepared [for sex]?" asks Aaron McHugh, MS, NCC, QIDP, dual diagnosis specialist for Philadelphia Coordinated Health Care. "How do you assess preparation for sex? Who gave us a test? When it comes down to it, is someone really going to be ready? Who knows? Lots of people have hangups about sex, and their first times were not healthy and happy and pleasurable. So to me, it's the same risk we all take, and I believe every person has the right to have that risk."

Unfortunately, for some individuals, specifically those with intellectual/developmental disabilities (I/DD), the risk is elevated in what may be an attempt to shelter. Too often, young adults with I/DD don't receive the sexual health/sexuality education needed to make safe choices both in regard to sex and their bodies in general.

"Most people with intellectual disabilities are excluded from sex education in school," says Sorah Stein, MA, BCBA, AASECT, a certified sexuality educator. "The problem is that they then lack the information and skills to support socially and age-appropriate sexual behavior."

To Be Human
There are those who wonder why individuals with I/DD would need sex education, and the answer is easy: they're human. "People with disabilities are wired the same way as everyone else. They have the same core need for meaningful relationships and opportunities to express their sexuality and fulfill sexual needs," explains Leigh Ann Davis, MSSW, MPA, project manager for Justice Initiatives at The Arc.

"Society has traditionally held common misconceptions about people with disabilities," she continues. "They are often seen as having no sexuality at all, or they are seen as being 'oversexed.' The truth is, they are neither, though their surroundings and environments can have a lot to do with how and why they are given these labels. First of all, people with I/DD are sexual beings and have sexual needs and desires just like all people. Their intellectual functioning does not preclude them from having sexual feelings for others, wanting close relationships, wanting to get married, or having a family."

Melissa Keyes DiGioia, CSE, cofounder and director of education of Finding Your Individuality, agrees, adding that having basic sexual health knowledge enables all individuals to feel even more human. "One of the reasons why I believe this work is so important is because it's life affirming. It's a really important thing to know how your body works. Our folks [individuals with I/DD] often struggle with transformations. It may be less overwhelming for that young person if they get the information they need to take care of their bodies."

To Be Safe
Beyond the basic right of being human and being sexual is the understanding that more information—more sex education—would enable individuals with I/DD to be safer and more prepared for sexual encounters, something that is very much needed.

"People with ID are more likely to be sexually victimized," McHugh says. "They're definitely less likely to report, and they're more likely to suffer more long-term consequences."

Davis adds, "It is well documented just how often sexual violence occurs in the lives of people with intellectual and/or developmental disabilities. Research suggests percentages as high as 80% of women who have I/DD and 50% of men with I/DD will be sexually abused before the age of 18," she says. "It is important that we teach skills that make it less likely for people with ID to be victimized, and also more likely to report it if it does occur."

In young adults and adults with I/DD who are able to consent to sexual activity, a lack of education can lead to traumatization. McHugh recalls a young woman who decided along with her boyfriend to have sex. He also had a disability.

"She didn't know what sex was," McHugh says. "[The boyfriend] wanted anal sex, and he violated her anally. She was traumatized by it. She hadn't received any sex education.

"It's better to educate so that individuals with I/DD are aware of what can potentially happen than just turning a blind eye to it and assuming it will never happen."

When to Start
But when should such education start? Sex education typically begins in the school system for youth in or around the age of puberty. Middle school and high school have been deemed the appropriate times developmentally for teachers and parents to broach the subject. However, young adults with I/DD aren't on the same levels developmentally. So should there be a delay?

Short answer: No.

"I do not believe that people should wait to present sex education based on ages, particularly when kids in their cohort who are nondisabled are receiving their education," McHugh says.

Longer answer: Even puberty is too late.

"We are sexual beings from birth until death," DiGioia says. "Sexual education happens when a person is born into this world. Having early interactions with a child—naming body parts, communicating boundaries—is critical. Talk early, talk often, talk all the time," she says, referencing a motto of Sexuality Information and Education Council of the United States (SIECUS).

Doing so will enable the individuals to be more aware should they be victimized. "If we define sex education more broadly, education needs to start very early by teaching young children with I/DD correct terms about their body parts so that if sexual abuse occurs, they will be able to talk about it clearly," Davis says.

It will also enable individuals to know what is and is not appropriate, so as to avoid miscommunication and mislabeling. McHugh again recalls a client who had a rash near his groin. "He was tugging at his penis [to relieve the itch]," he says, "and the whole team wanted a sexuality consultant when he actually needed medical treatment."

"When I hear that story, I identify with that story," DiGioia follows. "People with I/DD are individuals that need sexual education the most and are punished the most for not receiving it."

Where to Start
While young people with I/DD should be treated as any other individual when it comes to the theory of sexual education and its delivery, the actual practice of teaching does require specialized thought.

"Important things to keep in mind when providing education is to make sure the information is given in a format that makes it easy for the child/youth to understand," Davis says. "They are very much concrete thinkers and need information provided in simple-to-follow ways. It's important to individualize the information whenever possible, so that it gives the lesson being taught more context that relates to his or her world. For example, if a youth with autism is fixated with a certain topic, use that to help the youth connect to what is being taught."

McHugh recommends visuals. "The more visuals the better. I would say to look for any kind of charts on anatomy, as well as real-life scenarios and have the anatomical parts. Have dolls with the actual anatomical parts." He also strongly encourages the use of available resources. "I have to say, regardless of what other people's opinions may be, one of the greatest resources is Planned Parenthood."

DiGioia advises doing some research beforehand, recommending several books written on the subject. "There are a couple of books that come to mind for me, particularly for parents or professionals working with their young people," she says. "Terri Couwehnhoven wrote Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals. It is really fantastic. It gives a framework for why to teach and gives some guidance on how to do it."

Other books include Sexuality: Your Sons and Daughters with Intellectual Disabilities by Karin Melberg Schwier and David Hingsburger and The Facts of Life … and More: Sexuality Education for People with Intellectual Disabilities by Leslie Walker-Hirsch.

For a more complete list of available books, DiGioia recommends visiting the SIECUS website (www.siecus.org).

As for a specific curriculum, that may be more difficult. "Because of the wide range of learning impairments associated with intellectual disability, it is difficult to create or modify curricula in a way that can be globally used," Stein says. "Much time and effort, not to mention knowledge, is required to identify what each learner needs, where to access the information and how to present it to facilitate successful and lasting learning."

McHugh agrees. "There are not a lot of I/DD-specific things," he says. "People have tried to create curriculum specific to people with different disabilities. But I don't know any top-notch ones. It comes down to the instructor. It comes down to the clinician."

But it doesn't just come down to any one individual, whether an instructor, clinician, or parent. Rather, it's about the team of individuals working together to provide the best information.

As DiGioia puts it, "Sex education doesn't happen in a bubble."

— Sue Coyle, MSW, is a freelance writer and social worker in the Philadelphia area.

National Center on Criminal Justice and Disability. (2015). Violence, abuse and bullying affecting people with intellectual/developmental disabilities: A call to action for the criminal justice community. http://www.thearc.org/document.doc?id=5145.

Sexuality and U. (2012). Teaching sex ed for youth with intellectual disabilities. Retrieved from http://www.sexualityandu.ca/teachers/teaching-sex-ed-for-youth-with-intellectual-disabilities.