The DSM and the autism overdose

As the men and women in suits hash out definitions for the latest version of the Diagnostic and Statistical Manual (DSM-V), Dr. Allen Frances considers the lessons of the last revision, in 1994:

There has been an “epidemic” of autism in the last fifteen years. This used to be a very rare condition diagnosed less than once in every two thousand kids. Now it is diagnosed once in a hundred. We will elsewhere take up the foolish theory that this was cause by vaccination. Here we will trace the real causes.

People change slowly, if at all. In contrast, fads in psychiatric diagnosis can come and go in a fast and furious fashion. The autism fad resulted from changes in DSM4 (published in 1994) interacting with a strong societal push.

There were two DSM4 contributions: 1) the inclusion of a surprisingly popular new diagnosis, Asperger’s Disorder; and, 2) much less importantly, editorial revisions meant only to clarify the criteria for Autistic Disorder, but which may have inadvertently lowered the threshold for its diagnosis.

The societal contributions were: 1) expanded school and therapeutic services whose reimbursement often required an autism diagnosis; 2) increased advocacy; 3)reduced stigma—especially when many successful people admitted to having Asperger’s; 4) extensive press coverage; 5) an explosive growth in internet information and social interaction; and as a result of all these, 6)improved surveillance and identification by doctors, teachers, families, and by the patients themselves.

For many of the newly identified patients, getting a diagnosis has brought the advantages of: 1) improved school and therapeutic services; 2) reduced stigma; 3) increased family understanding; 4) reduced sense of isolation and; 5) internet support and camaraderie.

But there are always costs. With its lowered diagnostic thresholds and resulting increased inclusivity, Asperger’s brought autism to the fuzzy boundary with normal eccentricity and social awkwardness. Some people are misidentied as having the diagnosis, when they really don’t. This is especially true when the diagnosis is made in less expert hands in primary care medical facilities and in school systems ….

The discussion of autism alone is confusing enough for many. Maybe that’s a reason why only invested political interests are paying attention to what the suits work out. But there are far more important things afoot than whether one’s favorite sociopolitical punching bag is a mental illness or not:

A new revision of the diagnostic manual is now in its first draft and can be viewed at DSM5 proposes another radical reorganization in how autism is defined. Instead of separating classic autism from Asberger’s, there would be one unified “autism spectrum” disorder with a single criteria set. The rationale is that there is no clear boundary between the two and that autism is more conveniently seen as one disorder, presenting with different levels of severity. The DSM5 proposal also has the virtue of attempting to raise the diagnostic requirements for the milder presentations of autism above those required for Asberger’s in DSM4. The Work Group is appropriately worried about false positives and the proposed criteria set would theoretically reduce the rate of misidentified autism.

There are two perhaps equally strong arguments against this possibly useful DSM5 proposal: 1)that it will increase the stigma attached to the milder forms of (Asperger’s) autistic behavior if they are lumped together with the much more severe, and; 2) because clinicians often ignore the fine points of what is required by the criteria thresholds, the “autism spectrum” may in practice actually expand even further to capture ever milder forms of eccentricity contributing to an even higher prevalence of misidentified “autism”. this is obviously the opposite of what the Work Group intends, but it could be an unanticipated and unintended consequence.

The reply to these objections would be that: 1) autism will lose some of its stigma if the public comes to associate it with milder cases; and 2) the Work Group can only do what the science says and can’t be expected to predict or prevent misuse once their work is in the public domain.

Still, it’s worth paying some attention to the ongoing DSM revision. If nothing else, it will give you some good ideas about what the next psychotherapeutic and prescription fads will be.

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