If you're a fan of the fire-breathing, illuminated guitars used by the glam-rock band KISS, you can thank author John Elder Robison for their existence. Now more widely known as one of the leading authorities on Asperger's Syndrome, long before he was himself diagnosed with the condition, Robinson turned his ability with electronics into a career in rock 'n' roll. By age 40, he finally discovered he had Asperger's and, in recent years, has turned his experience into books sought by thousands: first, "Look Me in the Eye," a memoir of the difficulties he faced growing up undiagnosed; second, "Be Different," a guide for people with Asperger's; and now, "Raising Cubby," detailing his experiences parenting a son who is also on the spectrum.
Despite his advocacy, Robison confronts assumptions about Asperger's Syndrome every day. He described the most aggravating misconceptions he comes up against.
1. Aspergians can be stupid, too
Nowadays, it seems like every time someone mentions a name and says "genius," there’s a psychiatrist right behind him, speculating that the person is probably autistic, too. The truth is, not all of us on the autism spectrum are super-intelligent--for instance, I've done some remarkably dumb things myself. We come in all shapes and sizes. Smart and not smart, extraordinarily literate to nonverbal.
Still, many people with Asperger's have extreme focus, allowing them to really drill down when they're passionate about a subject. Combine that with extreme social awkwardness and you have someone who spends less time partying and more time immersing himself in, say, rocketry, or food science, or animal husbandry.
Then again, maybe we are smarter--we've got Einstein, Stephen Hawking, and now Sheldon Cooper.
2. You can't tell just by looking at us
Just because you can't see autism doesn’t mean it isn't real. The medical profession defines autism, in part, as a communication disorder, which means that you might not realize someone is autistic unless you've observed him or her interacting with others over time. Yet very often people glance at someone and say, "he doesn’t look autistic!," as though only a man flapping his arms or wearing a full-body cast would convince them that something isn't right.
Anyone who knew me as a child, or who has read my first memoir, "Look Me in the Eye," would agree that I was a troubled, disabled kid. I didn't find out that I had Asperger's syndrome until I was forty, and I've spent much of my adult life learning to fit in and look normal. When I succeed at fitting in I feel proud, so it's frustrating when people express doubt that I'm really autistic. Many autistic adults share that sentiment.
3. Save your pity
People with autism appreciate your tolerance but not your pity. Most of us do not regret the way we were born. All we really want is acceptance and an equal shot at building a good life for ourselves. That includes providing the counseling, medical interventions and therapies some of us need. You can help us by asking your legislators to include coverage for those services for autistic people in state insurance mandates, and by supporting efforts to help us find jobs, make friends, and become productive members of our communities.
4. "Rain Man" wasn't real
Understanding autism involves more than having seen the movies "Temple Grandin" and "Rain Man." I’ve served on government committees with people who have doctorates in neuroscience and biology, and they say, "I wish I understood autism."
In fact, neuroscientists tell me the task of unraveling the foundations of autism is one of the biggest challenges the field has ever faced.
5. No, there's no cure
Autism is a way of being, based on neurological differences. It might be a disability, but it's not a disease, and there's no evidence that it can be "cured." Too often, people say things like: "I have a friend who cured her kid’s autism! Two weeks of a special diet and the kid is like new!" The truth is, your friend’s child might be thinner, but he’s as autistic as ever, believe me.
Whatever challenges it presents us, autism is part and parcel of who people like me are. Talking as if it's a disease to be cured demeans and degrades us. It's like being a kid with divorced parents, and having mom tell us what a lowlife dad is.
What we can do is work toward remediating the way in which autism disables us. One day, medical science may deliver us a means of "reaching inside" to make elemental changes, but for now the best help for most of us comes from studying and practicing behaviors that help us fit in. There are no quick fixes, but there can be great success through behavioral therapy, especially when it begins at a young age.
Even in adulthood, many people on the spectrum have the capacity to grow, both socially and intellectually. Some of us develop new abilities that allow us to fit in more easily. We move from being oblivious to problem behaviors to being aware of them. We figure out how to take advantage of our strengths and compensate for the traits that hold us back. We might always be autistic, but it need not be as much of an obstacle.
6. And no, it's not caused by vaccines
Please don't tell me that Asperger's or autism is caused by vaccines. I'm not going to argue that mercury or lead don’t cause brain damage, or that there aren't harmful chemicals in our environment. But autism has a strong genetic component, and there is no scientific evidence that vaccines are a trigger. In my case, my dad and my son also have Asperger’s--we and the millions of other autistics in the world today didn't all get it from a shot.
7. Asperger's didn't cause Newtown
People with Asperger's are no more likely to be violent than people without it. Like a lot of us who are advocates for people on the spectrum, I was troubled by coverage of the Sandy Hook shootings. Some reporters made it sound as though shooter Adam Lanza's alleged Asperger's was a cause of his violent behavior. But as Amy Harmon pointed out in an op-ed in the New York Times and as I wrote on PsychologyToday.com, there is no evidence that autism is associated with premeditated violence toward others.
8. We don't mean to scare you
People with Asperger's often don’t realize how they appear to others, and might not be aware of the consequences of their behavior. My son, Cubby, learned that the hard way when he pursued his passion for chemistry and ended up being investigated by the Bureau of Alcohol, Tobacco, and Firearms and charged with multiple felonies by an over-zealous prosecutor. (He was acquitted of all charges.) His trouble with the law, and our personal experiences with every other point above, are described in my new book, "Raising Cubby."
John Elder Robison is the author of the New York Times bestselling "Look Me in the Eye," as well as "Be Different," and "Raising Cubby." He lectures widely on autism and neurological differences, and serves on committees and review boards for the CDC, the National Institutes of Health, Autism Speaks and other organizations. A machinery afficiando and avid photographer, John lives in Amherst, Massachusetts, and can be found online at johnrobison.com.