Judah Kalb still remembers when he was in elementary school in Chapel Hill, N.C., and tried to give his male friend a hug. A counselor reprimanded him, warning that men don’t do that. “Obviously, I wasn’t trying to make them uncomfortable,” says Judah, who is 17. From that experience, he told me, he learned “the importance not only of intent, but how you’re perceived.”
That gap is something we all struggle with. But for autistic people like Judah, sorting out boundaries can be particularly frustrating. Questions of consent and personal space are an endless labyrinth where every word, eye movement and gesture requires translation.
I understand this well. As a person with autism, I’ve struggled to assess what others need from a relationship. As a kid and young adult, I could become myopically focused on a woman I liked, no matter her reaction.
In fifth grade, I sent long-winded love letters to a classmate who didn’t return my affection. In college, I continued that pattern. One night at a party, I asked an attractive woman to dance. Afterward, I got her number and suggested that we get together after exams ended. I waited a few days, then tried texting and calling. No answer. Eventually, I remembered that she frequented a particular bar. So I started going there to track her down and chat.
To the neurotypical, that story sounds creepy, even stalkerish. They’re right: There’s no excuse for violating others’ boundaries. But back then, I was focused on my own reactions. No one taught me otherwise.
It doesn’t have to be that way. Many autistic people will engage in interpersonal relationships and, yes, sex. Their educators, loved ones and parents can teach them how to do so safely, with the consent of all parties.
Judah’s mom, Annissa Clarke, self-diagnosed as autistic, said she and her husband made sure their son received proper information about relationships and personal boundaries from a young age. “We’ve kind of been talking about it since he was a little guy in terms of, ‘This is what sex can be when you reach that point when you are older and you need to always be aware of these things, and some of these things are even trickier because you are autistic,’ ” Clarke said.
She uses current events, like the Steubenville, Ohio, rape case, to talk about consent. She has tried to stress that Judah has responsibilities as an actor and a bystander. “You know, if you’re at a party with a bunch of people … it’s not just what you personally do but what you allow to happen in your space,” Clarke says. It’s about “just trying to create an ethos more than just a hard, fast set of rules.”
It’s part of stressing a healthy outlook. “We don’t want him to feel repressed or like sex is a bad thing,” Clarke said.
Judah is in a relationship with a gender-fluid partner who is also on the spectrum. He says he has developed his own set of rules for how to respect others’ space. “Unless I know someone really well, I generally try not to initiate any kind of hug or whatever,” he said.
Shannon des Roches Rosa, whose son Leo, 16, is autistic, uses tutorial videos from writer and advocate Dave Hingsburger. Hingsburger focuses on sexuality and relationships for people with disabilities. One DVD deals with how disabled people use condoms. Another, “Hand Made Love,” is a guide to male masturbation. “Finger Tips,” with Sandra Haar, discusses female masturbation.
“One of the problems that people can get into is they don’t establish realistic boundaries as they would with other people like, ‘Oh, well, you know, he grabbed my boob. That’s okay” because he’s autistic, Rosa said. “And it’s like, ‘Uh-uh. Nope.’ ”
Consent is, of course, a mandatory part of any kind of intimate interaction. Any activity conducted without consent is and should be considered a violation. Using autistic people’s lack of social skills as an excuse or scapegoat for not giving consent does a disservice to other autistic people and says they are not deserving of or cannot handle sexual activity or love.
“When I come across stories about people being sexually aggressive — people who then say, ‘Oh, I have Asperger’s’ — it is frustrating, because autistics are far, far more likely to be victims of abuse than abusers,” said M. Kelter, an autistic blogger who writes under that pseudonym at theinvisiblestrings.com. “Pinning violations like this on the spectrum just serves to stigmatize autistics and normalize sexual abuse.”
Jason Travers, assistant professor at the University of Kansas, says two major components of sex education should be discussed with autistic people. All children, he said, need a conventional talk about anatomy, sexuality and consent.
“The other thing to be taught relates to a person’s ability to protect themselves from potential harm and protect themselves from committing harm to others,” he said.
An effective approach is social skills instruction. In this program, teachers describe a situation. For example, they might outline a scenario in which someone is making an unwanted sexual advance. The group of students talk together about how to respond before acting out various options and agreeing on which is best. Afterward, the students practice these responses during skits in the real world.
“It’s pretty common for people with autism, high-functioning people in particular, to learn what the right answer is,” Travers said. “It becomes a rule-governed way of operating. But oftentimes, if it isn’t practiced in the real world, knowing that rule doesn’t result in using that rule.”
Being understanding about the limits of autism is important to ensure that we have fulfilling sex lives and relationships. Similarly, teaching about consent is important not just so that autistic people respect others, but also to protect them from being taken advantage of.
Lindsey Nebeker, a development specialist at the Autism Society, said many autistic people are socially naive. She had what she describes as a “confusing relationship” with a high school teacher, which led to sexual abuse.
Nebeker expanded on this in a photo for Project Unbreakable, which uses photos to allow victims of abuse tell their stories. On her personal website, she wrote that she dealt with self-harm and anorexia to cover up the pain.
“I was in boarding school at that time, so I was away from my family and I didn’t feel very loved,” she said, seated next to her husband, Dave Hamrick, also autistic, in their home in Alexandria. “So this was one person who made me feel like sort of the one to go to and be the one to comfort me.”
However, over the years, Nebeker has been able to foster a healthy relationship with Hamrick, with whom she has been for nine years; they married last year. The two sometimes switch between sharing a bed and sleeping in separate rooms.
Occasionally, Nebeker said, certain sounds or actions could trigger memories of the event, which might cause her to pull back, but she told me one thing she appreciates with Hamrick is that he always asks before they engage in intimate activity.
“I don’t know if some couples think that’s kind of corny, but just for some reason, really, it’s comforting for me the fact he even asks,” she said.
Hamrick said it is good to know whether Nebeker is explicitly ready for any kind of activity. “It’s like when I go into her intimate space,” he said, “it’s nice to have the consent to do it.”