Benjamin Nugent, the director of creative writing at Southern New Hampshire University, has written in the New York Times, "I Had Asperger Syndrome, Briefly." As a 20-year-old, he was the subject of a film made by his mother, a psychology professor and an "Asperger specialist."
Nugent outgrew the diagnosis. He had been a nerdy, unathletic, unsociable bookworm, but he grew up, became a writer and found a social and professional niche for himself. I wonder if that ever happens to other people? Nugent reflects: "But my experience can't be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome."
He also wonders, "If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened?"
In a separate Times piece, psychiatrist Paul Steinberg, writing about the exploding diagnosis of Asperger, looks forward to a happy time when there are fail-safe diagnostic techniques:
Eventually, biological markers, now in the beginning stages of development, will help in separating autism-spectrum disorders from social disabilities. For example, researchers at the University of Pittsburgh Medical Center have recently developed three-dimensional brain scans that look at brain wiring. In preliminary studies people with autism-spectrum disorders appear to have too much wiring and disorganized wiring in areas involved with language acquisition.
So, brain scans will safely differentiate what Steinberg views as the false diagnoses that befall people like Nugent from real ones.
That's one possibility. The other is that such diagnoses will always be iffy, and a brain scan of Nugent's when he was 20 might not have ruled out -- might even have reinforced -- his mother's diagnostic impression built on his nerdy lifestyle. What would we have then? As Nugent points out, the DSM (psychiatry's diagnostic manual) says that Asperger syndrome is "a continuous and lifelong disorder."
Nugent notes that the more restrictive definition of autism spectrum disorders being proposed for the next edition of DSM (V) has provoked numerous objections: "Many prominent psychologists have reacted to this news with dismay. They protest that children and teenagers on the mild side of the autism spectrum will be denied the services they need if they're unable to meet the new, more exclusive criteria."
Is this anything like the criminal justice system's extremely tightly-defined criterion for guilt, "beyond a reasonable doubt," based on the idea that a single "misdiagnosis" of guilty is worth letting several people go undetected (and, in the criminal justice system, unpunished)? Except what could be the downside to mislabeling someone with a psychiatric diagnosis like Asperger? Steinberg identifies several:
The downside to this diagnosis lies in evidence that children with social disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children. In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability. George Orwell might never have been able to write his brilliant essay about the shooting of an elephant if Asperger syndrome had been part of his permanent medical record.
But there is actually a worse downside than these. That is seeing oneself as permanently limited, disabled, in a way the person can actually overcome. What is the cost -- to themselves and society -- if talented people like Nugent and Orwell are locked within a shackling diagnosis? And even were Steinberg correct that there will be some infallible, probably neurologically-based, diagnostic method somewhere down the line, there remains one problem. People outgrow diagnoses all the time.
So the question of how far to cast the net -- with the advantages and disadvantages to be found on both sides of rounding up more or less people -- will never, can never, disappear. People with experiences like Nugent's -- and people who don't realize that they can escape such diagnoses -- will always occur, and not that uncommonly.
This piece is a tribute -- or is it a memorial -- to such people.
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This post has been updated since its original publication.