Did the DSM Create an Epidemic of Asperger’s?
There’s an ‘epidemic of Asperger’s,’ says psychiatrist Dr. Allen Frances in a December 29th NPR story, and he knows why, or so he says.
The Diagnostic and Statistical Manual of Mental Disorders contains the diagnostic criteria for psychiatric disorders and is sometimes referred to as the “bible of psychiatry.” As the chair of the DSM-IV Task Force, Dr. Frances edited the last edition of the DSM, the DSM-IV. And, it was the DSM-IV that classified Asperger’s Syndrome as a separate disorder from autism, with the latter seen as a more severe condition. From NPR:
“Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this,” Frances says.
A study was done to figure out how common Asperger’s was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger’s that was sweeping the nation.
“At that point I did an ‘oops,’ ” he says. “This is a complete misunderstanding. It was distressing. Quite distressing.”
Dr. Frances suggests that there has been an ‘epidemic’ of Asperger’s because school districts, parents and others are applying the diagnosis upon too many children ‘”who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes.”‘ Now, says Dr. Frances, if a child receives a diagnosis of Asperger’s, he or she can get ‘”into a special program where they may get $50,000 a year worth of educational services.”‘
Dr. Frances is, it seems, suggesting that Asperger’s is a sort of ‘trendy diagnosis‘ to give a child as described above, with the intent of getting that child (expensive) special services.
As NPR reports, Dr. Frances has become ‘the new DSM’s most prominent critic.’ A revised version, DSM-V, is due in 2013, and has so far been widely critiqued. Asperger’s Syndrome, first recognized by the American Psychiatric Association in 1994, will be dropped under the new revisions to the DSM-V and subsumed under the category of “autism spectrum disorder.” Collapsing “Asperger’s” into “autism” has caused quite a bit of consternation (here are one mother’s views), with many stating that Asperger’s and autism must be separate conditions.
While I do think Dr. Frances has a point about how the DSM criteria can be linked to changes in the rates at which a diagnosis is given, I really think it is inaccurate and, if I may say so, more than a bit insensitive to suggest that anyone seeks a diagnosis of Asperger’s for a child with the sole desire to get a child ‘into a special program.’ As my own son Charlie is on the severer end of the autism spectrum, his diagnosis and the extent of his needs have rarely been in question. But too many of my friends who have a child with Asperger’s or with PDD-NOS or ‘mild’ autism have had to struggle mightily and persistently to get their child the education and services he or she needs simply to get through a school day in one piece.
Dr. Frances’ comments in the NPR story do a great disservice to parents of children with Asperger’s and to individuals with Asperger’s themselves, who have many challenges that can seem invisible.
A note about the whole issue of why the prevalence rate of autism has risen so dramatically in the past decade plus:
Some do speak of an ‘epidemic of autism,’ and the search continues for some environmental factor. But in considering why an average of every 1 in 110 children in the US has an autism spectrum disorder (according to the latest statistics from the Centers for Disease Control and Prevention), we need to continue to keep in mind factors such as:
- better understanding about autism
- decreased social stigma about a condition once thought to be caused by bad parents and ‘refrigerator mothers‘
- the changing criteria of the DSM itself
- the role of diagnostic substitution (for instance, as rates of autism have increased, rates for ‘mental retardation’ have decreased).
Photo by richardmasoner.