Dr. Allen Frances was among the lead doctors involved in creating the DSM-IV - the diagnostic manual which invented the autism spectrum we know today. Asperger syndrome first appeared in that manual, as did the most recent incarnation of a disorder called Pervasive Developmental Disorder Not Otherwise Specified. Typically, people with Asperger syndrome have strong speech and language skills but impaired social communications skills along with sensory dysfunction at some level. People with PDD-NOS may be very similar to those with Asperger's - or may have some but not all of the symptoms associated with the most severe "autistic disorder."
Frances is not happy with the way in which the DSM-IV has been used and, in his opinion, abused. The new DSM 5 is due to come out in 2012 with the Aspergers and PDD-NOS diagnoses removed in favor of a more specifically described disorder called Autism Spectrum Disorder. Language delays are no longer among the criteria for the new ASD, and it is unclear whether and how intellectual challenges (mental retardation) will be treated relative to the "new" autism.
In a recent blog post on Project Syndicate, Allen writes about what he terms the "Autism Generation." In his opinion, the diagnostic criteria for which he was largely responsible have led to a huge movement toward over diagnosis and misdiagnosis. While there is probably a small genuine rise in the incidence of autism overall, he says, the biggest problem is that autism has become a "fashionable" disorder:
The most likely cause of the autism epidemic is that autism has become fashionable - a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.
This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.
The Korean study paid no attention to the bias that haunts all epidemiological studies, which always overestimate pathology rates by including as disorder even very mild presentations that do not have clinical significance. It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.
If Frances has read anything produced by or about the autism community in the last ten years or so, he surely knows that what he's written fits the category of "fighting words." Not only because plenty of people will disagree with his perspective, but also because many will, in fact, agree wholeheartedly.
On some points, Frances is not entirely off the mark. I am sure that the broad and general terms used to define autism spectrum disorders in the DSM IV are too vague and too inclusive to be terribly useful. And I am sure that celebrities such as Jenny McCarthy, Jim Carrey and many others have played a big role in raising awareness of the term autism and thus increasing the likelihood of diagnosis. There's no doubt that many people diagnosed with autism today would have had a different diagnosis or no diagnosis at all 30 years ago.
On the other hand, I know no parent who would choose to have a child with a "smidgen of autism" receive a full-blown autism diagnosis. And its hard to believe that there are legions of doctors out there ready to hand out diagnoses to any child who builds a tower of blocks. The idea that "services and entitlements" are sufficient to incite a diagnostic tidal wave seems absurd. And while there may be a handful of adults who self-diagnose based on slight evidence, those self-identified adults aren't even counted in the statistics.
I'll be interested to hear others' perspective on Frances' piece. Where is he accurate? Where is he overstepping the truth?
More on Autism and the DSM IV and 5
The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will make sweeping changes to the criteria for diagnosing autism. What will these changes mean to you and the autism community as a whole?
The new diagnostic manual (DSM 5) will be put into practice in 2013. When that happens, the term Asperger syndrome will disappear from diagnostic literature. Find out why.
When the American Psychiatric Association changes its diagnostic criteria for autism spectrum disorders, many people will cease to qualify as autistic.