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Labeling Autism And Creating Community

There may indeed be drawbacks to the proposed DSM V definition of autism, but by including only a single category of autism, it does emphasize this initial moment of togetherness.
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My son Sam's recent birthday party was a festival of so-called "high functioning" autism. One young guest tried to guess my phone number without any hints. Another refused to go on the carousel until performing a careful study of its mechanics. A third was a bit late because he devised a route to get there that involved taking four different subway lines. Sam himself contributed by announcing, "We don't go on the carousel at birthday parties." Although he later changed his mind, this kind of rulemaking in an unfamiliar situation is a pretty typical coping method for the high functioning.

As endearing as these stories are, they also reinforce a view of high functioning autistic people as simply "quirky." In a recent story in the Gulf Times, for example, Dr. Allen Frances writes, "Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self." Dr. Frances' opinion carries special weight because he was chair of the task force that added the supposedly milder Asperger Syndrome as a category of autism in the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM IV). Nevertheless, he goes too far when he suggests that the high functioning are mainly "normally eccentric."

That's certainly not the case for Sam. There's no doubt that he's quirky, but he also has a disability that significantly affects his everyday functioning. This has been confirmed by the three Ph.D. psychologists who have evaluated him over four years, by the private therapists who work with him, and by the staffs at the two different special needs schools he has attended. If he were just quirky, someone would have mentioned it by now. More importantly, without the DSM IV version of autism, Sam might be struggling in a mainstream classroom rather than getting the support he needs.

And yet parts of the autism community are worried that the benefits of the expanded definition of autism have come at the expense of the severely autistic. This worry has been exacerbated by a proposed change in the definition of autism, set to be published in the next version of the DSM (DSM V) in 2013. It appears that the Asperger's category may be eliminated, leaving a single "Autism Spectrum Disorder" that is meant as a label for anyone with any form of autism. Some argue that the proposed change will institutionalize a view of autism as a disorder only of the "high functioning."

For example, Harold Doherty, the father of a severely autistic teenager, writes on his blog that under the DSM V criteria, "The vast majority of those with Autistic Disorder who are also intellectually disabled will be excluded." Meanwhile, at "The Age of Autism," Anne Dachel writes in response to Dr. Frances, "He's redefining autism as something mild and acceptable. The only way his argument flies is if we forget about the kids with severe autism."

Interestingly, though, some of those "high functioning" people with Asperger's are also anxious about the DSM V definition -- though for different reasons than the parents of severely autistic children. Writing at The Daily Beast, Lucy Berrington, a board member of the Asperger's Association of New England, suggests that, "The Asperger's diagnosis ... has provided meaningful identity and generated a tremendous international self help movement." She worries that those benefits will disappear if Asperger's is eliminated from the DSM V, and that those who are now diagnosed with Asperger's will receive the wrong diagnosis or none at all.

But what exactly does it mean to have the "wrong" diagnosis? This question came to mind as I read a recent blog post at Psychology Today by John Elder Robison, author of "Look Me In the Eye" and himself diagnosed with Asperger's. Robison summarizes a recent study performed by prominent autism researcher Catherine Lord. Looking at what labels individuals receive, Lord found that the critical factor was not anything about them, but rather where they were diagnosed. Some institutions gave out mostly Asperger's diagnoses. Others went with Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). And defying the stereotype of Asperger's as the high IQ version of autism, the Asperger's patients at one clinic in the Midwest had an average IQ of 85.

This study reminds us that labels are not rigid and immutable, but rather fluid and varied. We tend to think that a label conveys an identity, but in fact it's the community of the labeled that ultimately defines what any label means. After all, the Asperger's label didn't have any intrinsic meaning when it was first introduced. People with Asperger's had to give it one. And there was no such thing as "severe autism" until there was a milder form of autism to go with it. You can make an argument that having defined these categories, we ought not to let them go. But you can also argue that the new DSM V definition will force us to create new identities -- and who's to say they won't be better ones?

It's also worth remembering that at least when we're talking about autistic children, the people who worry about labels are the parents. And no matter what label their child receives, parents tend to have remarkably similar experiences. Priscilla Gilman, my fellow Huffington Post blogger, writes about receiving her son's diagnosis in her memoir, "The Anti-Romantic Child." Gilman's son Benj is high functioning by any definition of the term. A self-taught reader with a talent for music, Benj is, throughout the memoir, emotionally attached to his family and engaged with the world.

And yet Gilman writes that shortly after Benj was diagnosed with hyperlexia and possible Asperger's, "The child I thought I knew was gone ... he was complicated and confusing and terrifyingly at risk." In those early days, Gilman says that after interacting with Benj, she "would run to the bathroom afterward to sob, kneeling on the floor and running the water so he wouldn't hear me." A few years later, Gilman's marriage fails and Benj is admitted to just one of 20 schools that he applies to.

This may sound like a depressing book, but it's far from it. The story of how Gilman finds joy in Benj even though he's not what she expected is one that any parent of any type of child can learn from.

But the pain that Gilman experienced is real, and it should be recognizable to any parent who has ever heard the word "autism" applied to their child, no matter whether the autism is "classical, "Asperger's," or "PDD-NOS." As parents, we all start out together. And despite the vast differences among them, autistic people start at a similar place, too -- each one of them must claim an identity from whatever label the DSM hands them.

There may indeed be drawbacks to the proposed DSM V definition of autism, but by including only a single category of autism, it does emphasize this initial moment of togetherness. And it reminds us that getting a label is not the end of the story, but the beginning.