In The New York Times, psychiatrist Paul Steinberg writes (h/t Fred Lynch):
A 1992 United States Department of Education directive contributed to the over-diagnosis of Asperger syndrome. It called for enhanced services for children diagnosed as being on the autism spectrum and for children with “pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a diagnosis in which children with social disabilities could be lumped. The diagnosis of Asperger syndrome went through the roof. Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase. Too little science and too many unintended consequences.
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....
In his 2009 book “Parallel Play,” Tim Page, a former music critic for The Washington Post, describes his relief in being given an Asperger syndrome diagnosis as an adult and thus having an explanation for his longstanding social difficulties. But the rubric of a “social disability” would be more accurate than “autism spectrum” for people like Mr. Page, and potentially just as relieving.In addition, adults and children who have normal expressive and receptive language skills can benefit more fully from social-skills programs than adults and children with true autism. In fact, Tim Page learned a large measure of his social skills from an Emily Post course, just as Warren Buffett credits a Dale Carnegie program with changing his life.Page responds:
“Social disability” does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness.
I do not allow my diagnosis to control my life, and yes, I know that I am “high functioning” and not necessarily typical. Still, I have no doubt that Asperger yndrome explains a great deal about my triumphs, as well as my tragedies.In the New York Times, Benjamin Nugent writes that his psychologist mother identified him as having Asperger's and put him in an educational video.
As I came into my adult personality, it became clear to me and my mother that I didn’t have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother’s intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.
The authors of the next edition of the diagnostic manual, the D.S.M.-5, are considering a narrower definition of the autism spectrum. This may reverse the drastic increase in Asperger diagnoses that has taken place over the last 10 to 15 years. 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.
But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.
The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.