A century ago, people with intellectual and developmental disabilities (I/DD) were often institutionalized and kept apart from society. Thousands were sterilized without their consent to keep them from reproducing.
Today, the picture has changed. People with I/DD are more visible and accepted—often attending mainstream schools, holding down jobs, sometimes marrying and raising children. But when it comes to sex, sexuality and relationships, challenges remain. Many people—including parents and caregivers—still hold stereotypes about the sexuality of this population.
"There is still the perception that people with intellectual disabilities are asexual, that they are eternal children, that they aren't interested in sex," says Shelley Watson, PhD, professor of psychology at Laurentian University in Ontario, Canada.
People with I/DD may also be seen as incapable of sex or unable to be effective parents, adds Kara Ayers, PhD, of the University of Cincinnati University Center for Excellence in Developmental Disabilities. At the other extreme, she says, is the view that people with I/DD are unable to control their sexual behavior.
Partly as a result of these perceptions, people with I/DD may reach young adulthood with no information about sex. Research shows that young adults and adolescents with I/DD know much less about sex than peers without disabilities (Education and Training in Autism and Developmental Disabilities, Vol. 50, No. 1, 2015).
And that's dangerous. A lack of sex education makes this population more vulnerable to unplanned pregnancy and sexually transmitted disease, Ayers says. In addition, children with I/DD are 4.6 times more likely to be sexually abused than children without disabilities, according to the World Health Organizationopens in new window.
Parents of children with I/DD may benefit from additional instruction themselves. A study by recreational therapist Kristen Clatos Riggins and Matthew Asare, PhD, found that parents of children with I/DD changed their views about sexuality after an educational session. Initially, 60 percent thought children with disabilities didn't have sexual interest; after the session, 87 percent thought they did (American Journal of Health Studies, Vol. 31, No. 3opens in new window, 2016).
But while many people with I/DD and their parents or caregivers are hungry for information on intimacy, such resources are scant, says Danielle Sheypuk, PhD, a psychologist in private practice in New York City who specializes in sex and relationship counseling. She recently spoke about sexuality and disability at a conference and was surprised by the number of parents who reached out to her afterward.
"One mother said she's been looking for a long time for a group on dating and sexuality for her daughter who's in her early 20s with Down syndrome and she can't find anything in the city," she says. "All she finds are other mothers looking for the exact same thing. It's a huge unmet need."
In addition to education, people with I/DD need self-advocacy skills so they can communicate what they want from their lives and deal with challenging situations, Ayers says. That can lead to better decision-making and less impulsivity, which could also help prevent them from having unprotected sex.
At the same time, education for people with I/DD should not focus exclusively on the dangers, which can cause them to associate sex with "fear-based avoidance of abuse," Ayers adds. "That leaves way too little room for the other side, which is to endorse and empower persons with intellectual disabilities to have positive attitudes toward sexuality."—Lorna Collier
For resources on sex and I/DD, visit RespectAbility at www.respectability.org/resources/sexual-education-resourcesopens in new window.
