Aspergers and the DSM

National Public Radio had a story yesterday about the upcoming changes to the Diagnostic and Statistical Manual or DSM, which will come out with a new edition in a few years.  The DSM is basically the bible of psychiatry, so whatever gets into the DSM makes a big impact in the wider society.

Back in 1994, when the DSM was last updated, Aspergers was added.  I think for people like myself who stumbled around for years wondering what was wrong with them, adding Aspergers to the DSM was a godsend.  However, some don't think it was a good idea. 

In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"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.

Frances then talks about how schools have created an incentive to allow kids that might be a bit eccentric the chance to have one-on-one learning instead of being mainstreamed.


A few thoughts:

My mother told me shortly after I got my diagnosis that she had asked doctors on more than one occasion if something was going on behaviorally.  The doctors all assured her things were okay, and to some extent, they were.  But this was also the 1970s and early 80s and if anyone knew about autism, it was about the more severe Kanner's Autism.  I was a kid who could talk pretty early and the only issue was that I was a bit odd.  That didn't fit what was the definition of autism back then.

Moving to the present, I can say that it has been incredibly helpful to know what I'm dealing with.  For years, I bounced from job to job doing things that would enrage my associates and not knowing why.  I would try certain jobs that just were a disaster.  After ordination, I would do things that would upset people and not even know I was doing something to piss people off until it was too late.

The thing is, having a diagnosis has allowed me to see what I can do, what I can't do, and what things I need to learn and overcome.  I don't have to stumble around in the dark anymore thinking that I'm a terrible person.

Has the diagnosis been overused?  I don't know.  But we've also seen a spike in people getting diabetes and we aren't suggesting those diagnoses are overused.

Maybe there are problems when a new illness enters the DSM, but I think I'd rather err on the side of doing too much instead of too little.  The costs of diagnosing someone with Aspergers might be high, but the cost of not doing anything results in loss productivity, stress, depression and other problems. 

My life has been changed for the better because I got a diagnosis of Aspergers.  It would be nice if Dr. Frances saw that.