Michael John Carley is a self-advocate who frequently visits companies to discuss topics related to autism. In this post, Carley writes about how we, as a society, fail individuals with autism by not creating a comprehensive sex-education guide. This was originally posted on Sinkhole.
In 2003, I founded the Global and Regional Asperger Syndrome Partnership (GRASP), one of the largest membership organizations in the world for adults on the autism spectrum. During my ten-year tenure as executive director, I couldn’t help noticing that many members were terrified of sex. Despite remarkable progress in many areas for the autism community, on this subject, adults on the spectrum still experienced high levels of guilt, fear, and shame. The rest of the world was starting to develop healthier attitudes about sex during this same decade, but while we fought the good fight about vaccine nonsense and words (like “cure”), almost none of that wonderful, reassuring, neurotypical world knowledge was reaching people with non-apparent disabilities.
Additionally, many other spectrumites shied away from sex due either to rectifiable sensory issues and/or often-rectifiable social anxiety – yet I found no sensory or anxiety-reducing activities attempting to address their challenges. Entire sexual lives were being sacrificed because people were embarrassed to ask for help.
As it turns out, this fear of sex kept many of us celibate, and this widespread fear-based abstinence has appealed to our caregivers, and (big picture-wise) to our country. Just look at all the available sexuality curriculums for individuals on the autism spectrum. The instruction experienced by most of our population (if we get any at all, as most of it is written for parents) is so overloaded with relationship concerns, puberty instruction, or fear-based disclaimers – regarding health and legal concerns – that it is impossible for us literal-thinkers to believe that sex is a good thing. As sex educator Al Vernacchio has made clear, we teach our kids (spectrum or not) that we do not want them to have great sex. We want people to know how babies are made, how to avoid becoming victims of crime, and (if lucky) what will happen to our bodies at age 13 or so, but we seem morally opposed to training kids to (eventually) become confident lovers.
That said, the scare tactics in our segregated universe do have a legitimate social origin. Individuals with all disabilities have a medieval, awful, and trauma-filled history with sexual assault in schools, institutions, on the streets as homeless adults, or in the supposed safety of family life. It is a terrifying legacy that carries an infinitely higher degree of danger – especially for girls – than probably any peacetime neurotypical situation. Often, the abuse is hidden, and so the vast extent to which the problem exists goes mostly unacknowledged, even to this day.
In the early 1970s, a young journalist named Geraldo Rivera made his name by uncovering widespread mistreatment and neglect at a then-respected New York institution for the developmentally disabled. The name of the institute, Willowbrook, has since become a word in our collective lexicon that resonates as a nightmare. But starting with the discovery of horrors like those at Willowbrook, society began examining other institutions (schools, even families), uncovering vast abuse in the process. We then rightfully set out to correct the problem, and though the issue hasn’t been eradicated, we’ve made great strides.
Yet, as with so many other things, we jumped over the emotionally-healthy middle ground and landed in the opposite extreme.
Nowadays, too many authors and clinicians in the autism world regard themselves as “sexpositive” even as they conclude every sentence about how wonderful sex can be with a giant “BUT!” We are too afraid to admit without disclaimer that sex is not about horrors. We can’t state the truth that, to most, sex is about pleasure.
My intention here is not to trivialize the dangers, like sexual assault, that sex educators warn us spectrumites about. Instead, I want the conversation to be framed differently. What if the imperative subjects of unwanted pregnancies, safe sex practices, and STDs were categorized under the auspices of “Health”? What if avoiding sexual assault, or the Sex Offender Registry, were listed under “The Law”? How would we spectrum-folk, as precision-based learners, regard the word “sexuality” then? There is so much potential happiness therein, and yet with the exception of death, nothing seems to scare our society more.
Part of the problem is that we equate sex with relationships, when the two are very different topics, and the latter is infinitely more complicated. Another part of the problem is religious influence. And yet another part of the problem is that every generation is convinced it reinvented sexuality, which often renders parental advice to be somewhat irrelevant (myself included, folks).
Because of our educators’ terror on our behalf – that we not succumb to the aforementioned horror stories – we spectrum-folk are not being given confirmation of how pleasurable sex can be, how healthy sex is for the physical body, how no one has low self-esteem when experiencing an orgasm, or how many options individuals really have (as opposed to the limited options we are informed of). Even the most non-verbal of us will know what turns us on and what doesn’t – regardless of whether or not we’ll ever have sex with another person. And if raised in a heterosexual environment, very often – whether the caregivers are bigots or not – the option (and subsequent permission) that you might be different is almost never presented to you. Others who are quite verbal are usually given the standard “you’ll figure it out” cop-out when, of course, “figuring it out” is a known diagnostic challenge for us.
Everyone needs instruction – even in the basics. And in our society, we often don’t get it. How many schools out there know they need a social story – badly! – teaching their more-challenged spectrum students how to masturbate, and when and where it’s appropriate? But these schools wouldn’t go near the topic. Why? This would require illustrations depicting hands that are either stroking penises, or rubbing clitorises, and these schools have to answer to often sickeningly unhealthy school boards, who are too eager to scream “pervert!”, telephone a revoltingly over-prosecuting criminal justice system (that is all too eager to shout from the rooftops that they caught a “pervert”), and therefore gain favor with a society that reports “sickness” in such a manner that renders us all…sick.
We need instruction that is healthy and positive, and open to all possibilities. But our instructors instead try to spin the seemingly mandatory, fear-based instruction as being simultaneously full of positive attitudes. The result is a spectrum adult that is scared and confused, not positive.
We are not a population with the best chance of obtaining the great, mountain-moving reciprocal love affair, nor do we have the same shot at career fame that neurotypicals have. Sex might be the best thing we have…if we’re allowed, and if we allow ourselves. If reciprocal relationships are truly beyond us, then why not make masturbation a more important declaration of self-love? I can’t tell you how many times I’ve run into a clinical professional who’s worked with significantly-challenged spectrumites and who has a story about that non-verbal male who one day “whipped it out” and began masturbating in an inappropriate setting. They all tell this story the same way, bravely admitting how freaked out they were about how to stop it.
And yet no one tries to imagine what’s going on in the mind of the spectrumite. He’s just discovered the greatest thing since sliced bread, and you’re telling him it’s wrong to do it? In his eyes, how stupid do you now look? Or, at least, will he really trust your motives the same way after the incident? Even today, some still think it is okay to bypass instruction on such challenged folk as to the changes their body will undergo during puberty. However, though our minds are different, our bodies grow, for the most part, at the same rate as everyone else. Neglecting such instruction may lead to future behavioral problems.
And for others more able to mirror greater society? Caregivers may be afraid that they’ll seek out sex clubs or orgies—and there is definitely more inside such experiences for individuals to process, especially with regard to expectations. However, these days, most of those environments are very strict about informed consent, safe sex practices, and no physical harm allowed. And the extra clarifications/instruction that we might need regarding those expectations? It’s doable, folks. We can be fairly pragmatic listeners if you can be comfortable instructors.
Our barriers to promoting healthy attitudes stem not from logic, but from unconscious, semi-conscious, or conscious moral objections – often-flawed value systems that have been embedded in us whether we wanted them or not. But the truth is, they have no place influencing what at root, is a discussion about biology.
Did you know? OAR is releasing a new sexuality and sex education resource for self-advocates ages 15 and up. Sign up here to be notified when the resource is released.
About the Author
Michael John Carley is the founder and CEO of GRASP – the largest organization in the world comprised of adults on the autism spectrum. He regurlarly speaks at conferences, hospitals, universities, health care organizations, school districts, and Fortune 1000 companies. Carley was one of the two self-advocates who addressed Congress in their first-ever hearings on autism; in addition, he’s also addressed the UN, and is regularly published in magazines. Carley lives with his wife and two sons in Wisconsin. You can visit his website and read more about his accolades and achievements here.