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The A-word

Sam Henry, who has approved this message. (Photograph by Sam Ekren)
In 1994, coincidentally the year my son was born, Asperger syndrome was added to the Diagnostic and Statistical Manual. A month after Sam started third grade, I had what had become the typical, annual conversation with his teacher. Sam was falling behind. He seemed unaware of what was expected of him. Permission slips and homework never made it home. The teacher returned my call during her lunch break. I could tell she was guarded, reluctant to say what she was thinking. “I don’t want to scare you with the A-word,” she said.

“What A-word?’’ I knew my son wasn’t an asshole.

Autism, she said. Then she apologized; she had to get back to class but we would talk later. I googled autism and within minutes, came upon another A-word: Asperger syndrome, an autism spectrum disorder. The checklist of symptoms included:

• Lack of social skills
• Preference for being alone
• Narrow range of interest
• Doesn't make eye contact
• Difficulty with transitions
• Lack of understanding of others' emotions and motivations

Check, check, check, check, check, check. It all made sense. Years before I wondered if he had attention-deficit disorder, but he had no problem paying attention to things that interested him. As a preschooler he was fascinated by the solar system, and then the digestive system, which resulted in detailed drawings of how the planets revolved around the sun and how food made its way through to its inevitable end. I’d even written an article for Parenting magazine about kids' obsessions, quoting child-development experts who said that most of the time, it was just a child's way of exploring his or her world; but in some cases, it could be a symptom of autism. I included a sidebar along the lines of “When to Worry,” yet I didn't worry about Sam. My image of autism was a kid sitting on the floor, arms wrapped around his knees, rocking and unable to speak. I didn’t know about Asperger syndrome, but once I did, it accurately described my son.

Over the next few years, Sam received special education services to help him learn the social rules of so-called normal, neurotypical society. I think his systems approach was an asset. Over time he learned the rules of conversation, the expectations of others, and how to make eye contact without looking through a person. He worked really hard, especially in middle school. I think he’d agree that his primary motivation was to free himself from the school’s paraprofessionals and the rules that insisted, for instance, that all the autistic kids sit at the same lunch table. He was successful. In high school he “graduated” from special ed because he no longer needed these services. He manages his schoolwork with no help from me and gets really good grades. He’s thinking he wants to major in communication science and help Aspies and others like him learn to navigate the neurotypical world.

That might not be possible. In the forthcoming edition of the Diagnostic and Statistical Manual, the American Psychiatric Association is narrowing the definition of autism. “Asperger” is out. Under the new definition, Sam would have been diagnosed with “pervasive developmental disorder, not otherwise specified” —PDD-NOS, for short. Doesn’t exactly roll off the tongue. But worse, it means that fewer people with the diagnosis formerly known as Asperger will get the help they need. Yes, the syndrome has probably been over-diagnosed. Sometimes kids end up being labeled and placed at the autism lunch table when they really would benefit from sitting with the supposedly normal kids. But that’s no reason to throw out the Aspie-baby with the bathwater. Educators and developmental specialists have figured out how to help Aspies become happier, more engaged people. A generation has been raised and they’re ready to reach back and help others like them. There’s no sane reason to do away with the diagnosis, but I guess that’s neurotypicals for you. Sometimes it’s really hard to understand them.

Here are some articles from the New York Times on this same subject:

Asperger’s History of Over-diagnosis

I had Asperger syndrome. Briefly.

A Powerful Identity, a Vanishing Diagnosis

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