Talking about sex can be difficult for any parent. But for families with adolescents with autism, the topic can be particularly challenging. These teens often lag developmentally behind their typically developing peers. They may need help understanding the basics of consent and figuring out how to set appropriate boundaries. Those who are beginning to explore romantic relationships may need more explicit instruction on the social norms that go along with dating.
Sex education in this group is also important from a safety point of view. Individuals with disabilities, including autism, are at greater risk of sexual assault and abuse. Sex education has been shown to help mitigate that risk.
Eileen Crehan, associate clinical director at the Autism Assessment, Research, Treatment and Services Center (AARTS) at Rush Medical College in Chicago, helps run a sex education program for teens and young adults with autism. The 10-week sessions are aimed at groups aged 12 – 14, 15 – 17 and 18 – 25. Crehan talked with SPARK about how her program addresses sexuality issues in these groups.
SPARK: Why is sex education so important for teens with autism?
Crehan: If you have child with some delays or who seems younger than their age, it can be jarring to hear for the first time, ‘Let’s talk about sexuality.’ But sexuality education is important for general quality of life, for safety and protection and for avoiding legal trouble.
For adults, sexuality is part of being a human. It’s good to know about how your body works. Moreover, the more a kid with autism knows about sexuality the safer they are likely to be. Talking about sexuality decreases the sense of shame about it. That makes kids more likely to speak up if they are uncomfortable with something, like if someone is touching them inappropriately.
There are also legal issues. Young men with ASD often spend a lot of time on the internet and meet others there. They may have interests that are developmentally young, so the folks they strike up conversations with may be under 18. If things progress to swapping pictures, there are huge legal ramifications. We spend a lot of time in our groups emphasizing that 18-year-old threshold. The good news is that it’s a clear black-and-white rule. If you are over 18, only romantic activities with others over 18!
What are some of the most common issues that come up in your program?
Boundaries are the number one issue, from both parents and kids. If your kid gets stuck on someone or wants a girlfriend or boyfriend, how do you know when that person is not interested or how much to persist? That’s obviously not an issue just for autism. For those who are already dating, how to meet people is also important.
Safety is a big issue as well. As we know from everything in the news lately, conversations about consent can be tricky. When you have difficulty reading others, it can be especially hard.
How do you help participants learn about boundaries?
Some schools use something called the circles curriculum, which outlines how close people are to you – family, friends, crossing guards, for example – and the appropriate behaviors for each group. We fold sexual relationships into that. It’s okay to ask a parent or teacher questions about sex, but not the crossing guard. We talk about the difference between a friend and a romantic partner. And someone you have a crush on who doesn’t like you back.
A lot of movies and TV shows suggest that if you do increasingly romantic things for someone, they will fall in love. But in reality, that’s not always true. For example, we ask participants, how many times can you contact someone without hearing back before you stop? They typically say somewhere from six to ten. We give them a two-phone-call rule. If you leave someone two voicemails, and they don’t respond, that’s it.
How do you tailor sex education to teens with autism?
Rachel Loftin, the former clinical director of AARTSC, worked with Planned Parenthood to develop a curriculum designed for people with lots of language. We’re also working on versions of that curriculum that are more visual. Lots of folks who come to our center aren’t ready for an in-depth lecture.
A lot of times being more explicit and concrete can be really helpful. Saying “Don’t let anyone do what you don’t want them to do” is vague. We are more specific. We say, “Here are some things that might come up if you have a romantic partner. You can decide if you want them to happen or not. For example, do you want to kiss someone with your mouth closed? Do you want someone to touch your neck?” Part of this is learning about boundaries and part is exploring possible sensory issues or trigger zones.
Do you find that students have a lot of misinformation?
Terms sometimes get mixed up. Expressions like ‘the birds and bees’ can be confusing to someone who thinks literally. And words that kids use at school are often not the anatomically correct ones. For instance, sometimes kids are confused about where their ‘ass’ is. And they might not understand the different contexts in which those words are appropriate – If you’re a teen or young adult, it’s fine to say ‘ass’ with friends but not with teachers or at school when adults are listening.
We do think it’s important for students in the group to be aware of what these things are. It will come up on the bus and in the playground, and they need to know what’s going on. We share with parents what we talked about and give suggestions for how to continue the discussion at home.
How do you approach sex education in teens with less language?
We use the same overall curriculum and make it more visual. When teaching about puberty and lifespan development, we have pictures of babies, kids, teen, adults, and ask them a mix of questions, like which people here would have a period or drive a car or date another teenager. We do some labeling of anatomy to help teach those terms. But kids mostly seem to know or learn the anatomy and biology. It’s more the social and emotional piece that they struggle with.
One issue of great concern to parents today is the ubiquity of pornography. Many teens have already accessed online pornography. Is that something that comes up in your program? How do you deal with it?
Sexuality in today’s world is so different. Sexting and online pornography has changed so fast. For kids who spend a lot of time on the internet, it’s already in their lives. It’s important to address it from a development perspective, but it’s also potentially a legal issue. Parents often don’t like to talk about it. But if teens are already accessing online pornography, we want to give them enough information to navigate it safely. We spend a lot of time on the difference between over and under 18.
How have parents responded to your program?
Parents are often enthusiastic for their kids to come our center. Sometimes kids with autism get sex education at school, but it’s often brief and not adapted to their learning style. We give parents the topics ahead of time, so that if someone didn’t want their child to learn about contraception, they could skip that session. But we encourage participants to come to all of the classes. Most families we work with at the center have a range of reactions in terms of how much they want to be involved in these conversations. Some just want to leave it to us. Others want to know what we do and what they should do at home.
Are sex education programs aimed at people with autism becoming more common?
The topic is definitely becoming more common, in part because of two big articles that focused on sexual orientation and gender identity in people with autism. Nonheterosexual or nonbinary gender identity might occur at a higher rate in people with autism. I saw a bump in people contacting me after those studies were covered in the news. (For more on this topic, see “Living Between Genders” from Spectrum, an autism research news site published by the Simons Foundation.)
Is that something you’ve noticed in your practice?
I haven’t worked with enough people to make a strong conclusion. But anecdotally, individuals with autism tend to describe their behavior rather than identifying as heterosexual. My experience is that some people with autism are very rigid. For example, they say boys are only attracted to girls. Others think nonheterosexual orientations make a lot of sense. We see both characteristics of autism coming through – a black-and-white interpretation of the romantic relationships they have seen primarily modeled and a lack of conforming or awareness of stigma that might be associated with nonheterosexual orientations.
Do you have tips for parents who don’t have access to this kind of program?
There are plenty of books available. Not all are evidence-based, but they are a good starting point. The book we use in our center is called “Intimate Relationships and Sexual Health,” which is specifically for people with autism. We adapt it down for those who are less verbally based. Parent can also talk to their school about what is presented in sex education and try to figure out how to make it accessible.
Start earlier than you think you have to. The specific age depends a lot on the kid. For all kids, talking about changing bodies and boundaries should start when they are very young. More specifics about puberty should be introduced before puberty starts. That’s especially true if you have a student with a cognitive delay who may need more repetition to understand what is happening. Social and emotional topics, such as dating, should be introduced before a student starts dating to allow for lots of preparation, time for questions and practice of skills.
- Some teens and young adults with ASD may end up in trouble with the law because of their inability to understand what they should and shouldn’t be looking at online. “The Autism Spectrum, Sexuality and the Law: What Every Parent and Professional Needs to Know” provides a cautionary tale told by a man with autism and leading autism experts.
- Spectrum, an independent news site funded by the Simons Foundation, explores relationship challenges in people with autism in “Sex and Other Foreign Words” and further discusses the importance of sex education in “Adolescents with autism need access to better sex education“.
- The National Autistic Society, a UK-based advocacy organization, has compiled resources to help families discuss puberty, sex, sexuality and relationships.
- For those in the Chicago area, AARTSC will be running a set of summer programs. For those in the Boston area, Crehan is moving to Tufts University in the fall and will be starting similar programs there.