Obvious News Is Obvious

So an NPR article/segment about the DSM has been making the rounds. I thought I'd discuss a few particular points which stood out to me as particularly egregious.

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."

So, before Asperger's was an official DSM diagnosis, diagnoses were "vanishingly rare." Then, after the diagnosis is added, the number of diagnoses "exploded." Wow, who would have thought!

Seriously, I find Frances' argument and "distress" rather odd. What, exactly, did he think would happen? Why on earth did he and the other DSM IV authors include the Asperger's diagnosis if they did not want and expect people to be diagnosed with it? This makes less than zero sense.

And while Frances is correct, I think, in pointing out that obtaining services and accommodations is a major impetus for many parents seeking a diagnosis for their child, his view of the situation seems quite divorced from reality.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

I'm sure all of the parents who have spent inordinate amounts of time advocating for their autistic children to get an equal education will be surprised to hear that an autism spectrum diagnosis is an automatic ticket to a "special program," one-on-one education, and $50,000 of services. Really, where does this happen, exactly? For Frances to make such an off-the-cuff statement which so grossly misrepresents the reality of special education services and funding is incredibly irresponsible. This kind of misinformation contributes to the scapegoating of people with disabilities. Yes, public schools are often inadequate for all children. No, that is not the fault of children with disabilities, or their parents, or even those who write the DSM.

Frances' contention that a child needs an autism spectrum diagnosis to receive disability services is an even greater whopper. Special education services are not just for autistic people, seriously. In fact, most students who receive accommodations and/or services do not have autism diagnoses, but instead are diagnosed with AD/HD, dyslexia, or any number of other disabilities. But in Frances' world, special education students without autism diagnoses apparently don't exist. (??!!) Once we examine the real world, Frances' contention that Asperger's is over-diagnosed for reasons of special education funding starts to look rather silly. While it is true that diagnosis often does influence the services which someone receives--one reason why collapsing all autism spectrum diagnostic labels is a good thing--Frances' arguments are so at odds with reality that it is hard to take him seriously. Frances may be the author of the DSM Asperger's criteria, but that doesn't make him an indisputable authority on the subject. I wish NPR hadn't treated him as such. Why did NPR not talk with people who actually have Asperger's diagnoses?

While it is, perhaps, a step in the right direction for psychiatrists and psychologists to consider the social implications of the DSM, these kinds of assessments can't be done based on half-facts and misconceptions. The needs of people who fall within a particular diagnostic category must always be the top priority.

Consideration of the stigma of particular diagnoses is also an important consideration for DSM authors, but I really dislike the particular way of framing it which holds that it's okay to stigmatize some people but not others. Perhaps all of this time spent whinging on over-diagnosis might be better spent recognizing the arbitrariness of "normality," and working to dismantle the stigmatization that those with DSM diagnoses face. Arbitrarily labeling some people as being worthy of normality (and thus "misdiagnosed" or whatever) isn't enough.