When people with neurodevelopmental disorders that affect their social communication capabilities—like Paul and Grace, an older couple who, respectively, have Asperger’s syndrome, an autism spectrum disorder, and Tourette’s syndrome and some related problems with focus and impulse control—talk about their their sex lives, it can make outsiders (even doctors and family members) feel uncomfortable. Many such people assume that the communication issues conditions like these pose should desexualize those with them—that they simply wouldn’t or shouldn’t pursue physical intimacy.
People with ASDs may find it difficult to understand others, or communicate their own wants and needs, in some contexts. They might struggle with nonverbal cues, abstract language, social norms like those around personal boundaries, or adjusting to other's needs. These potential communication barriers can lead outsiders to worry that people with ASDs might struggle when navigating the complexities of physical intimacy and end up getting hurt.
Tourette’s, for its part, is characterized by physical and verbal tics that can only be suppressed temporarily, and often with great and distracting effort and discomfort. In rare cases, these tics can include involuntary sexual comments or actions, like groping someone else without consent. Some cases of Tourette’s co-occur with symptoms of other conditions, like attention deficit hyperactivity disorder (ADHD) or obsessive compulsive disorder (OCD), which can cause attention and learning issues, as well as socially inappropriate behaviors. Outsiders looking at these symptoms may worry that they will make it uniquely difficult for people with Tourette’s to communicate clearly and fluidly in sexual situations.
But this is not necessarily a reflection of people with these or similar conditions’ sexualities. Most have the same sexual needs and relationship capabilities as neurotypical individuals. People with autism and similar disorders may just struggle with forming and maintaining relationships without early, ongoing, and tailed education on, and support in exploring these topics. People with Tourette’s, for their part, may just need help controlling, and communicating with others about, their symptoms.
In recent years, ASD activists and organizations have helped to develop and disseminate in-depth and tailored sexual education resources and support services for people with these conditions and their wider communities. People with autism like Amy Gravino have started speaking openly about their experiences with sex—the good and the bad. A smaller group of organizations and individuals with Tourette’s have also started sharing guides on how to introduce and manage symptoms in relationships, as well as personal narratives.
VICE recently spoke to Paul and Grace about their experiences navigating sex and intimacy, as well as communication and expectation barriers stemming from their conditions. Their experiences are not representative of everyone with ASDs, Tourette’s, or similar disorders, but their open accounts of their own experiences contribute to expanding public conversations about disabled sex and relationships.
[Editor’s note: A psychologist and expert on disability and abuse who has worked with Paul in the past and known him and Grace for years connected VICE with the couple. Paul is an avid proponent of independent living and self-advocacy, and Paul and Grace confirmed they understood and consented to discussing the topic at hand. They asked VICE to change their names to protect their privacy for this article, given the intimacy of the subject matter. This interview has been lightly edited and condensed for clarity.]
Grace: When I was a kid, I had crushes on guys and acted out inappropriately because I wanted their attention. Later, I learned that if I want to draw attention from someone to make them like me, it should be positive attention, but that sometimes that doesn’t work out either. So, I just have to stop and think and feel good about Grace, and remember that I can’t change how they feel.
Paul: When I was young, I preferred to do things alone, like rock on a rocking horse. Teachers tried to encourage me to interact with other children, which was harder for me. When I feel turned down, I go back to my own, indifferent world and try to find pleasure in that. It gets tough at times to form certain relationships with Asperger's because change is very difficult. You think life goes in one circle, then when other circles get added in, it drives you crazy.
I had dated and had sex with other women before I met Grace. At the time I met her, I was in a relationship with another girl, but we split up a year later. Then I was single for four years. During that period, I spoke to Grace over the phone, and something about her turned me on. It was her sweet personality. We decided to give a relationship a chance, and it is beautiful.
Grace: I had great times when I got together with Paul. I was really excited, going to all of these events with him, going to his house, and meeting his friends. That was a lot of fun.
Paul: There have to be compromises on both parts in a love relationship and that was difficult for me in the past. I did try to encourage her to get into the things I’m really into, reading and the arts. But due to her disability, her attention span is shorter than mine, and I’ve come to gradually accept that.
Relationships require what you learn even from Sesame Street: Cooperation and learning to do things together and work through things instead of chickening out and giving up on the relationship. I know that I can sometimes have a one-track mind. But one has to think about the other person to figure out solutions.
Grace: This relates to sex, too. We can’t have sex because Paul’s penis will not fit in my vagina. We have tried several times throughout our relationship, and it was incredibly painful. I don’t know how I got that way. But we’ve always accepted that we can’t have sex. I’m sure not every other guy would have accepted that.
Paul: It’s something that did not work out. We didn’t make a fuss about it. The fun part is being together. We can still show our affection to one another, and that’s beautiful.
Grace: I’m very grateful to have Paul in my life, and we do other sexual things all the time. We take showers together. We touch. We kiss. We sleep together. We hold each other. We meow like cats. Paul always says, ‘We’re the cats. We are the cats.’ There’s a song he sings to me me in the car all the time when we’re together where he claps his hands and says, "We’re the cats, we’re the cats…"
Paul: We’re the cats. We’re the cats. We’re the cats!
Grace: And that makes us feel good.
Paul: We make sounds like cats as a come-on, sexually, in the form of meows or imitation purring. We think in terms of what affection would be for a cat, petting and stroking each other and acting as if we are cats with each other.
Paul: We have sex in different ways. Touching, feeling each other, and so forth. I masturbate until I ejaculate.
Grace: We masturbate together all the time and have lots of orgasms.
Paul: There are things she likes to do and that give her pleasure, and things that give me pleasure. I may have a desire for penetrative sex here and there that she can’t fulfill. It might be a dream here or there. We have to focus on finding a balance between those things and having an equal lifestyle. We figure out how to make it work.
Grace: I sometimes need to ask him not to be self-centered and to understand if I can’t do something. I have to accept that with Paul too. But that happens in any relationship. I’m a flexible person, and so is Paul.
Paul: The kissing, the hugging, the touching each other on the shoulders—we enjoy all of the sexual things that we do together very much equally.
Grace: In the past, it was harder for us to balance things. When my mom got real sick with diabetes and lupus after we got together, I had to take care of her. I wasn’t available to go to all of those events. He had a few affairs behind my back because he said I wasn’t available. That was very wrong to do, because that made me lose trust in him.
Paul: I didn’t understand that cheating wasn’t something you should do in a relationship. At times, I thought I wanted something more. I didn’t like a lack of sex. I eventually realized I was not thinking in terms of how Grace felt about things, or where she was coming from. I don’t do affairs anymore. We came to an understanding of what is expected in a mutual relationship for it to work out.
Now, if she tells me what she wants and gives me a reason why she wants it and if I understand the reason for it, then we can work it out. Then it works for both of us. It took a long time of learning and practice to develop this ability to understanding and compromise.
Grace: Now that I see Paul every single day, he says he’s learned his lesson about affairs and working through things together and not chickening out.
There are times that I ask him, "Are you sick of me, are you tired of me?"
He says, "No, not at all. We’re the cats." He cares and wants to work things out. I’ve never had a boyfriend who’s done that. I feel very lucky to have Paul in my life.
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