Why Individuals with Developmental Disabilities Also Need Sex Ed

James M. Loy, Miami University

Imagine it’s a typical day at a popular family theme park. An individual with autism, who looks old enough to be an adult, decides to use the public restroom, unescorted, when something unexpected happens.

“His particular style of using the bathroom is to drop his pants, which is a very different way that men urinate,” says Richelle Frabotta, certified sexuality educator and Miami University instructor. “So here is this large man urinating strangely.” 

Now imagine the alarm this might cause. Especially among those who may view such behavior as a violation of strict social norms around personal privacy, particularly in a place where young children are often present.

“That sets up possibilities that don't have many positive outcomes,” Frabotta says. “So if I can work with him to understand why dropping his pants at the urinal in a public place is not in his best interest, that's a positive change for him.”

As one of the few educators certified by the American Association of Sexuality Educators Counselors and Therapists (AASECT), Frabotta helps people increase their comfort level and knowledge around all aspects of human sexuality. Her approach has been recognized as “student-centered, research informed, medically accurate, developmentally relevant, and age appropriate” teaching for students, individuals, couples, and organizations.

She’s also developed strong relationships with individuals with developmental disabilities and the community agencies and programs who support them. And throughout her 25-year career, she’s found this to be an area of society that still struggles with the very idea of sex. “Typical folks don't get sex-ed,” Frabotta says. “Guess what atypical folks don't get. At all. Period.”

But this is a problem she’s trying to solve. 

Frabotta is currently working with the Ohio Department of Developmental Disabilities to improve its statewide strategy. She’s also involved with the Board of Developmental Disabilities for both Athens and Clermont Counties in Ohio, as well as a person-centered education center in Oklahoma. 

And as Coordinator of Miami University’s new Sexuality Education Studies Center (SESC), Frabotta has recently formed a partnership with Cincinnati Center for Autism (CCA), which is hoping to accomplish far more than just helping one individual avoid a public indecency charge. 

The SESC and CCA

Cincinnati Center for Autism helps children and their families find high quality and individualized educational and behavioral programming. As an alternative education placement center, this includes academics. But it also covers the kinds of practical life skills that can help individuals with autism lead more independent and fulfilling lives.

Cincinnati Center for Autism accepts students who are between two and 21-years-old. And when Sara Hazelton, a board certified behavior analyst (BCBA), first joined the organization, most students were on the younger end of this continuum. 

Soon after, however, many began to reach puberty.SESC Logo

As a natural time of change, puberty can be confusing for any adolescent. But for individuals with autism, many of whom struggle to effectively communicate their thoughts and feelings, it can also be profoundly frustrating. So when new behavioral problems began to arise, Hazelton suspected a connection. 

“We are getting students who we suspect potentially have sexual aggression,” says Hazelton. “We suspect this because some students have visible erections and/or may begin to masturbate. But, when redirected, they may engage in aggression, self-injurious behavior, and/or property destruction. They might be experiencing some sexual frustration, or other feelings that they don't know how to communicate.” 

As a Behavior Analyst, Hazelton views all behavior as a form of communication. Most of the students in the severe behavior program are described as non-verbal, which means they communicate in ways that do not involve voices or words. 

“Some of our students have learned to engage in problem behavior to communicate or get the things they want and/or need, which is why we may experience some of those problem behaviors,” Hazelton explains. “It is our job to teach, help, and support our students through sexuality education, so they have an understanding, based on their functioning and comprehension level. It is also our job to teach our students how to appropriately communicate their wants and/or needs in order to decrease problem behavior around sexuality education.”

It was this range of aggression and self-injurious behaviors surrounding potential sexuality education that prompted CCA to seek assistance from Frabotta. 

At the time, CCA teachers and staff did not have the experience required to provide the level of developmentally appropriate sexuality education these students needed. However, as a graduate of Miami University herself, with a degree in psychology and two minors in child and family studies, Hazelton knew that Frabotta did. 

Changing the culture

“The administration agrees that a sexuality policy should be in place,” Frabotta says. “So we're affecting language that goes into a policy. In fact, an undergraduate Miami student completing her capstone project in a disabilities course actually did the work to provide CCA with a rough draft of the policy for their consideration. And then, we’re talking about particular teaching strategies for students who are working through autism.”

Cincinnati Center for Autism LogoThe primary goal is to provide sex ed training for CCA teachers and staff, as well as additional workshops for parents and caregivers. A secondary component will also include the creation of an individualized and developmentally appropriate curriculum for the students themselves. They will learn, for example, how and why their bodies are changing, appropriate responses to certain sexual urges, the importance of privacy, and more.

Finally, in order to secure grant funding, the project also includes a strong research and evaluation component led by Joel Malin, Miami University assistant professor of educational leadership.

The data being collected will help CCA develop more effective professional development training and student-centered curricula as the partnership evolves. But eventually, Hazelton and Frabotta want to see even more progress happen far beyond CCA itself.

“We would like to change the culture related to sexuality education,” Hazelton says. “Because [for] this population, sexuality education gets brushed under the rug. People think that because they have a disability they don't have that right, or they don’t have those feelings. But they do. It's such a taboo conversation. People don't want to talk about it. But it's a reality.”

And ignoring this reality has other consequences as well. Because of their general lack of education around sex, how to advocate for themselves, or why they even should, individuals with disabilities often experience disproportionally higher rates of sexual abuse and sexual assault. 

So a proper sexuality education for this particular community is not just about creating more independence, satisfaction, and wellbeing. It’s also about providing more personal safety and a greater sense of security, which is something that everyone deserves.

“They can say, ‘No, I don't want this.’ Or, ‘Yes, I do want this.’ Or, know how or who to call for help. How to protect themselves. Where to look for appropriate material. And advocate for themselves for being a sexual being,” says Hazelton. “Because that's what they are. We can't take that away from them. That's just human nature.”