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 ….

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