If You Recover From Asperger's, You Never Really Had It


In a New York Times op-ed piece, Benjamin Nugent, author of American Nerd: The Story of My People, recounts how "for a brief, heady period in the history of autism spectrum diagnosis, in the late '90s, I had Asperger syndrome." His symptoms: 

I exhibited a "qualified impairment in social interaction," specifically "failure to develop peer relationships appropriate to developmental level" (I had few friends) and a "lack of spontaneous seeking to share enjoyment, interests, or achievements with other people" (I spent a lot of time by myself in my room reading novels and listening to music, and when I did hang out with other kids I often tried to speak like an E. M. Forster narrator, annoying them). I exhibited an "encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus" (I memorized poems and spent a lot of time playing the guitar and writing terrible poems and novels).

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person's ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn't have provoked rage and contempt in other kids during gym and recess.

These characteristics not only convinced Nugent's mother, "a psychology professor and Asperger specialist," that he suffered from a mental disorder but landed him a role in the 2000 instructional video Understanding Asperger's. A few years later, something embarrassing happened:

After college I moved to New York City and became a writer and met some people who shared my obsessions, and I ditched the Forsterian narrator thing, and then I wasn't that awkward or isolated anymore. According to the diagnostic manual, Asperger syndrome is "a continuous and lifelong disorder," but my symptoms had vanished.

Since the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), which was the basis for Nugent's diagnosis, rules out the possibility of recovery, it seems he was misdiagnosed. Then again, as Nugent notes, telling a friendless adolescent nerd he suffers from a lifelong social impairment that will make it impossible to function normally in the world could have a tendency to impede recovery, making the label to some extent a self-fulfilling prophecy. The diagnosis is also self-validating: People with Asperger's never recover because anyone who does recover did not really have Asperger's to begin with (just as people who insist alcoholism is an incurable disease say problem drinkers who learn to drink responsibly were never really alcoholics). Nugent emphasizes that at age 17 he "fit the bill," so if he was misdiagnosed it was apparent only when his life turned out better than the experts thought it would.

Based on his own experience, Nugent welcomes the proposed redefinition of Asperger's in the upcoming revision of the DSM, which calls for putting it in the same category as autism and tightening the criteria. Assuming that happens, many people who currently have Asperger's will, like Nugent, no longer have it. But it would not be correct to say they never really had it, assuming they met the behavioral criteria set forth in the current DSM. As with drawing a line between normal grief and "major depression," there is no biological test that can verify the diagnosis. It is all a matter of how psychiatrists choose to label (or not label) certain patterns of behavior, which nevertheless can have a serious impact how people perceive themselves and live their lives. 

For more in this vein, see my 2011 Reason essay "Diagnosing in the Dark."