Autism: The Most Popular Disability

If we shifted a percentage our energy away from the "find the cure" juggernaut toward creating opportunities for autistic adults, then we'd really be a society ready for its close-up.
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Autism is hip. It's hot. It's now.

It may seem strange to talk about a lifelong developmental disability in the same terms we usually reserve for a popular TV show, but there's no doubt that autism is having its cultural moment. My film, "Loving Lampposts: Living Autistic," is just one small example, and it's only the most recent in a long line of documentaries about autism.

But it's not just documentaries. Autism is very much in the cultural mainstream. It's the subject of an Emmy-winning HBO movie and a bestselling novel. It inspires news specials that bring respected anchors out of retirement. It's the focus of fundraisers hosted by major stars. And then, of course, there's World Autism Awareness Day, which now merely serves as the kickoff to an entire month of autism awareness.

There's no denying that autism is the disability equivalent of the most popular kid in the class. What's less obvious is why autism has struck such a chord. It's a question that those of us who think about autism regularly don't often consider, but it's worth asking: what is so compelling about autism?

I don't think it's simply the increased prevalence of autism. Of course, that's a part of it, but it doesn't really explain the movies, the novels or the other cultural explorations of what autism means. These works of art aren't particularly interested in statistics about autism, but rather in stories about autistic people. Why?

Here's a theory: autism is a surprising disability. What I mean is that parents usually don't know they're raising an autistic child until that child is somewhere between 18 months and three years old. Unlike Down Syndrome and other disabilities for which there are prenatal tests, autism can't be detected before a child is born.

Because of that, parents whose children are diagnosed with autism are surprised to discover that they are not raising the "normal" child they thought they had. And they are forced to confront their stereotypes, prejudices and feelings about disability.

Given the choice of whether or not to do such a thing, many people opt out. Indeed, about 90 percent of fetuses that likely have Down Syndrome are aborted. We can only speculate what would happen if a similar prenatal test existed for autism. But autism doesn't give us the chance to make a choice. It surprises us, and in doing so, it forces us to consider things that we would rather not think about.

I think that the ongoing cultural fascination with autism is our society's attempt to work out its feelings not just about autism, but about disability in general. Is it really OK to be different? What does it mean to live a meaningful life with a disability? Should we try to cure disabilities or accommodate them? Autism raises these questions in ways that many other disabilities don't.

It wasn't always this way. One of the most fascinating people in my film is Lila Howard , the mother of an autistic son who was born in 1951. Back then, of course, autism was almost unheard of. The most popular causation theory at that time was that frigid "refrigerator mothers" failed to bond with their children and thus caused their autism. There were no schools, therapies, movies, novels, fundraisers or awareness months focused on autism.

We could hardly blame Lila if, facing this situation, she had followed the advice of health professionals and put her son Lyndon in an institution. But she didn't. Instead, she created a school for him. She helped him learn to read, write, swim, ski and bike. She developed a jobs program for him and other autistic adults. She traveled the country in search of the perfect living situation for him.

Today, Lyndon lives in his own apartment in New York, as he has for about 15 years. He travels the city by himself, visiting restaurants where he is often well known to the staff. A number of aides assist him with daily tasks, supervised by the still-energetic, almost 90-year-old Lila.

What must it be like for Lila to see the cultural fascination with autism today? For years before anyone was listening, Lila answered society's questions about disability by insisting that every disabled person has a right to as full a life as possible. As the rest of us slowly struggle to understand what Lila somehow grasped instinctively, we can be thankful that unlike her, we don't have to go it alone.

And if this cultural zeitgeist were to help shift a percentage of our energy away from the "find the cure" juggernaut toward creating opportunities for autistic adults, then we'd really be a society ready for its close-up.

Yes, autism is hip. It's hot. It's now. Let's hope it stays that way.

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