In the Feb. 1 New York Times there is a telling op-ed by Benjamin Nugent, a successful writer and a "recovered" Asperger's patient.
A decade ago, at age 20, Mr. Nugent was the featured star in an educational video "Understanding Asperger's," produced by his mother, a psychology professor and expert on the topic. Mr. Nugent had received the diagnosis at age 17, when he exhibited evidence of all the characteristic Asperger's behaviors as these are listed in DSM-IV. He explains just how he managed to meet each criterion: 1) failure to develop peer relationships appropriate to developmental level ("I had few friends"); 2) 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 3) 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 DSM-IV defines Asperger's as a continuous and lifelong disorder. But Mr. Nugent abruptly and spontaneously outgrew his disease right after college and has lived happily ever after. Clearly, as his well-meaning mother now recognizes and regrets, he had been misdiagnosed in the first place. Mr. Nugent writes, "My experience can't be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger's syndrome.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." Mr. Nugent also wonders how much greater the ill effects of misdiagnosis might have been had he been mislabeled at a younger and more impressionable age. He was obviously not harmed by the stigma attached to being called "autistic," but would Mr. Nugent's ambitions and achievements not have been severely truncated had he, as a 12-year-old, accepted the seemingly authoritative prediction that he was going to be irrevocably impaired for life?
Indeed, as Mr. Nugent has intuited, he is far from alone in "recovering" from autism. A number of studies have documented the surprising instability of the diagnosis as it is currently applied. Some of this is expectable and inevitable; it is inherently difficult to make definitive diagnoses in infants, children, and teenagers, because they are in the midst of such rapid developmental changes. Some of the instability is also doubtless due to the beneficial effects of the recently increased provision of school and treatment services, especially when these are applied early and skillfully. But as Mr. Nugent implies, a good deal of the instability also comes from the loose way the diagnosis of autism is currently applied. The fact that school and mental health services are so coupled to the diagnosis must account for a significant part of the more than 20-fold multiplication in autism rates occurring in just 15 years. Autism used to be among the rarest and most homogeneous of psychiatric disorders; now it has become common, heterogeneous, unreliable, and unstable.
The DSM-5 has somewhat unwittingly and ambivalently suggested radical changes in the definition of autism that would narrow it considerably, thus increasing its specificity and reducing its instability. From a diagnostic standpoint (and to reduce the risks of realizing Mr. Nugent's fear of stigmatizing mislabels), a narrowed diagnosis makes great sense. But there is a completely understandable fear that such narrowing of diagnosis will reduce service and treatment resources for people who really need them.
There is no easy solution to the quandary of how to return to more accurate diagnoses while not jeopardizing needed services. The basic problems are interacting: the DSM-IV diagnosis of autism is too general to be a trustworthy guide to determine who gets which school services, and the linking of services to a diagnosis of autism naturally results in inflated rates. The best way forward would be to decouple the diagnosis of autism from services -- to link services instead to more specific assessments of the individual's educational, behavioral, and interpersonal needs. These are better guides than a vague and overbroad diagnosis of autism that explains less than it promises and carries too much baggage.
Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.
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