A slight uncomfortable laughter was shared among the crowd of mothers sitting in a circle as one mother said quietly, “I’m really trying to avoid bringing up the topic of sex to my son. I hope that day doesn’t come up soon.”
This was during a recent speaking engagement I gave to a parent support group. I arranged for all of us to sit around in a circle since the group was small enough to pull that off. I often find that with circle-style seating, the conversation becomes more open-ended, and I hear more from my audience. And the conversation can get very interesting -- such as when it turns into a conversation about autism and sex.
I was tempted to chuckle at the level of discomfort these mothers had in linking the words “autism” and “sex,” but kept to myself and gave a quiet smile. I understand why they would feel that way. Parents often find it awkward to have the “sex talk” with their kids. For a child with a developmental disability, it can be even more awkward for parents to initiate the “sex talk.” Whenever I ask parents about this, the number one reason they give is that they are unable to tell the level of ability their child or teen will have in grasping such topics. And with such a spectrum of cognitive levels, who can blame these parents for wondering? There is no single formula to educate an individual with autism on sexual topics, and the teaching approaches will vary from person to person.
What we can’t deny, however, is that individuals with autism and developmental disabilities go through puberty, experience hormonal changes, become curious about their own bodies, and are sexual creatures by nature -- just like anyone else. Some people are asexual, and some people never desire to seek a romantic companion. However, just because an individual has autism does not mean they lack hormones and the natural development of a sex drive.
In the autism community, all this is well known. The parents and professionals who work with adolescents can tell you about it, and the adolescents and adults with autism can share that as well. Even though my brother, James, is non-verbal and has not established the skills of romantic companionship, my parents and I know he is aware of his hormonal shifts and his natural development of sex drive. Then, there are other autistic individuals (and plenty of them) who do have a desire to seek a partnership, get into relationships, and even marry and raise children of their own. When you attend an autism conference, you will find several books, DVDs, and other media materials on the subject of autism and sexuality, distributed by specialty publishing companies such as Future Horizons, Autism Asperger Publishing Company, and Jessica Kingsley Publishers.
To the general population and mainstream media, autism plus sexuality is an unfamiliar phenomenon. But as the topic is gradually introduced to the limelight, people are becoming more aware. One really good example was when the movie Mozart and the Whale (starring Josh Hartnett) came out in 2005, loosely based on the love story of Jerry and Mary Newport. Shortly after, their book Mozart and the Whale: An Asperger’s Love Story was published. This was the first major story on autism and relationships I can recall that really stood out in the mainstream media. The movie and the book had come out right around the time Dave and I started dating, so they definitely served as inspirations to me. I wished for more stories like that to reach out to the general audience.
That is why Dave and I were ecstatic to share our story when we were approached a few years later by Glamour magazine. I hadn’t really paid much attention to the content in women's interest magazines in the past, but we both knew it was a major publication and were aware of how big an opportunity this was. It was an opportunity to tell the world that there are individuals with autism who do find love, who do have sex lives, and experience the ups and downs of a relationship -- just like any other couple. But as much as I was eager to share this with the world, I was also nervous. I knew not all the feedback would be positive, and I understood why. I try hard to tell people that although not everyone will find love, the possibility and the concept of autism and sexuality exists, and is very real.
Since then, other stories have broken into the mainstream, such as the movie Adam (a fictional portrayal of a young man with Asperger’s and a woman who is neurotypical), and The Seattle Times article on the real-life love story of Emilia Murry Ramey and Jody John Ramey (who have also co-written a book called Autistics’ Guide to Dating). There have also been stories about the complications a person can face in seeking love and establishing a sex life, such as the story Paul DeSavino and his family shared with ABC News’ Nightline.
In addition, countless individuals and other members of the autism community have posted blogs, uploaded YouTube videos, and written articles about the concept of autism and sexuality, in efforts to continue reaching awareness to the general audience.
The fascination and curiosity has no limits when it comes to autism and sexuality, leading to questions regarding what goes on behind closed doors. Sometimes, it leads to taunting. A woman from Queens, New York posted an entry on her blog about flipping through her copy of the March 2009 issue of Glamour on her bus ride back home, and came across the article about me and my boyfriend. In reaction, she wrote: “Autistics having sex?!?!? I can’t believe it!! I’d pay to see that -- a couple of mental retards f***ing!!”
Sad to see? Yes, it’s always sad to see ignorance. But I’ve learned that is part of the price one pays for exposure, and the best thing you can do in negative criticism is to ignore it and move on.
Besides ... I think this woman from Queens would be quite disappointed if she ever did have the chance to witness two autistic people having sex. It’s pretty much like two non-autistic people having sex.
A version of this essay was published on Naked Brain Ink, www.nakedbrainink.com