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Why adults with autism need sex education

by  /  13 March 2020
The Expert:
Expert

Liana Marks

Teacher, Milestones

What do autistic adults need to know about sex? Everything. Just like everyone else.

As I have discovered over the course of my career, a lack of comprehensive sex education may prevent them from forming fulfilling romantic relationships, and it may make them targets of abuse.

I am a teacher at a nonprofit organization in western Massachusetts that serves children and adults who have autism or intellectual disabilities. I often work with adults who are attending a sex education class for the first time. My students are diverse in gender — although often more men than women — diagnosis and age, ranging from 18 to 50 years.

Over the past four years, my colleagues and I have written an evidence-based sex education curriculum for these students. We have a gained a strong sense of what adults on the spectrum lack in terms of sex education — and also what they desperately want to know.

They want to know it all: from how to make a platonic friend to the right time for a marriage proposal.

Sometimes my students explode with excitement and an earnest desire to talk about topics they were long told were off limits. Other times they are filled with worry, afraid they are doing something bad if they talk about sex or even say the words ‘penis’ or ‘vagina.’

These reactions to sex education are not surprising or even unusual considering that many of my students are members of an especially underserved group: 84 percent of people with moderate-to-severe intellectual disabilities in the United States receive no sex education at all1.

This knowledge gap has negative consequences, including inappropriate or unsafe sexual behaviors and low self-esteem2. People with intellectual disabilities are also seven times as likely as typical people to experience sexual abuse. And without the right information about sex, adults with autism and intellectual disabilities can put other people at risk as well.

Teaching boundaries:

Until a decade ago, many experts did not consider the idea that people with autism or intellectual disabilities wanted romantic or sexual relationships. But those interests are expressed clearly in the notes stuffed into the anonymous question box at the back of my classroom: What is intimacy? What is a crush? How do I know if someone likes me if they are nice to me? When should I ask my girlfriend to marry me? What is sex? How do I make a friend?

Think back to elementary or middle school and ask yourself: How did you know that someone was flirting with you? Could you make educated guesses about what they thought or felt? How did you know when you had a crush on someone?

These subjects can be tricky for anyone, but for people with autism or intellectual disabilities — who often have difficulties with social communication — they are especially challenging. It is for this reason that our classes are responsive to the students, changing to reflect what each student wants and needs to learn on any given day.

Our core curriculum aims to break down topics that neurotypical adults may take for granted — flirting, dating, reading body language, distinguishing between public and private places and topics, emotions, co-worker relationships, self-care and abstract concepts such as love and intimacy.

For example, instead of jumping right into going on a date, we break it down into steps. First attraction, then crush, then getting to know someone. If this goes well, they would consider asking the other person on a date. Once a student is dating, the lesson becomes more about what healthy relationships look like.

We focus on how to build trust, respect, support and communication, and on setting boundaries. Knowing how good communication works between friends can help students later in communicating with a romantic partner. Knowing what trust feels like between family members may help them spot problems in romantic relationships.

For all of us, including autistic adults, sex education needs to be about much more than the mechanics of sex. It should be about relationships with others and with ourselves; about safe sex, consent and bodily autonomy.

Adults with autism or intellectual disabilities need safe places to ask honest questions about all of these aspects — without shame. I hope the work we are doing can become the norm. Until it does, I will make sure my classroom door is always open to anyone who wants to be there.

Liana Marks teaches adult sexuality classes at Milestones, a nonprofit organization in Northampton, Massachusetts.


References:
  1. Barnard-Brak L. et al. Intellect. Dev. Disabil. 52, 85-97 (2014) PubMed
  2. Gonzálvez C. et al. Sex. Disabil. 36, 331-347 (2018) Abstract