Quality sex ed is needed by all students, not just some

There has been a lot of discussion recently in Ontario and elsewhere about sex education. We have heard from diverse groups about what is taught and what is not taught in our schools. But there is one group whose voice has been missed.

Our students with developmental disabilities need sex education too. And no one’s talking about it.

When my sister, who has a developmental disability, and I were growing up in the ’70s and ’80s, neither of us received very much formalized education on sexual health. I eventually learned what I needed to, through friends, the media and books, but she had access to none of that.

As a result, she and her peers lacked the most basic sexual health knowledge. They did not learn about contraception, consent or what it means to have pleasurable romantic and sexual relationships. And she and her friends were defenceless in the face of possible sexual victimization.

Fast forward to the present — and things haven’t changed that much. Across the country, it’s not easy to find formalized policies addressing sex education in publicly-funded schools for those with developmental disabilities. In conversations with school teachers from several provinces who teach this population (both in separated classrooms and integrated classrooms) as well as parents, it appears it is too frequently left up to individual teachers to decide, what, and how they address sex ed for this population.

Helpful resources have been developed in several provinces (by community living agencies and others), but whether and how they are used in the classroom remains a question.

Sadly, then and now, the risks of abuse, victimization and poor sexual health are all too high.

I remember once, in my job as a psychologist, assessing the sexual knowledge and attitudes of a young man with a developmental disability. He knew what homosexuality was, and clearly articulated that it was bad. It turned out that he was sexually active in the LGBTQ community and felt confused and ashamed of who he was because he was never taught differently.

I also remember working with a young woman with a developmental disability who was diagnosed with a sexually-transmitted infection (STI). She got it from her boyfriend who had told her they didn’t need condoms because she took birth control pills.

Without inclusive sexual health information and the necessary skills to negotiate intimate relationships, we keep people with disabilities extremely vulnerable. They also learn attitudes and false information which can put them at risk, misguide them and also make them feel guilty or ashamed of the choices they are making.

Here’s the staggering evidence.

A 2018 national NPR investigation conducted a review of federal data in the U.S. and found reported sexual assault rates are seven times higher for those with developmental disabilities than those without, with most assaults occurring during the day and by individuals familiar with the victim.

A recent large-scale study from the U.K. reported that youth with intellectual disabilities were significantly more likely to have unsafe sex than other youth, and girls with these disabilities were more likely to get pregnant and to become parents by age 20.

And in Canada?

The limited data available suggests that sexual assaults are more common for this population here too. A 2018 Stats Canada report says a staggering one in four women with cognitive disabilities experienced abuse by an adult before age 15.

In terms of pregnancy, young women with developmental disabilities have babies as often as young women without disabilities. But they are more likely to be living in poverty, with mental health issues and with health complications for them and their newborns.

A new study from my colleagues and I also indicates this population is twice as likely to have another baby within a year of childbirth, putting the infant at a high risk for health complications and even mortality.

And what about safe sex?

In a 2017 study, my colleagues and I found that HIV is as common for adults with developmental disabilities as it is for adults without these disabilities — only this population is sicker and requires significantly more physical and mental health care than others with HIV.

Sex happens whether it is discussed in the classroom or not. And those with developmental disabilities have sex too.

Quality sexual health education in schools for those with developmental disabilities is a critical need.

We need to think carefully about how to teach the information in a sensitive way, matching the learning needs of each student.

The good news is that we live in an era where we have great advocates with disabilities who are ready and able to be part of the conversation on how we can do this better.

Let’s get talking.

Yona Lunsky is director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health at CAMH and professor in the Department of Psychiatry at University of Toronto. She is also a contributor with EvidenceNetwork.ca based at the University of Winnipeg.