DSM5 in Distress

The DSM's impact on mental health practice and research

The Autism 'Epidemic' Marches On

What is driving rates even higher

 

A large and comprehensive study recently performed in Korea has produced a surprising and disturbing result. The rate of autism is reported to be an astounding 1 in 38 - almost 3% of the population. Not so very long ago, autism was one of the rarest of disorders, afflicting only one child in every 2000-5000. Since the publication of DSM IV in 1994, rates in the US have exploded to about 1 per 100. The new Korean study adds fuel to widespread fears that some sort of environmental toxin is causing this raging 'epidemic'.

No one can know for sure what is going on- how much each of the five following possible contributing factors has actually influenced the huge jump in the rate of autism. I will give you my best educated guesses and the rationales supporting them:

Possible Factor 1: There has been a change in the definition of autism.
We know definitely that this is a partial contribution. Before DSM IV, autism was among the most narrowly and clearly defined of disorders. The symptoms began very early in life, before age three, and were a striking and devastating combination of severe language deficits, inability to form even the rudiments of social relationships, and a preoccupation with a very narrow set of rigid rituals and stereotyped behaviors. In preparing DSM IV, we made the decision to add a new category describing a milder (and therefore much more difficult to define and distinguish) form of autism, Asperger's Disorder. This seemed necessary because some (still quite rare) children presented with more or less normal language development, but with grave difficulties in making social contact and in engaging flexibly in the expectable range of behaviors. We knew that Asperger's was about three times more common than classic autism and expected its inclusion to triple the rate of autistic disorders to about 1 per 500-1000. That gets us part way up to higher rates, but not nearly to 1 per 38.

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Possible Factor 2: Previously missed cases are now being picked up.
An increased awareness of the symptoms of autism and better training in its diagnosis has undoubtedly resulted in improved case finding- thus identifying people who should have been, but previously had not been, diagnosed. It is impossible to determine just how significant a contribution to sky-rocketing rates comes from this improved diagnosis. My guess is that this is a factor- but not one that comes close to bringing us from 1:500 to 1:100, much less 1:38.

Possible Factor 3: An environmental toxin is causing an outbreak of autism.
This has been the most popular and most feared explanation. It is almost certainly a quite small factor, if it is a factor at all. There has been no sudden environmental change that would account for such a sudden explosion in rates. The previously most widely accepted contender, Wakefield's vaccine theory, was proven to be the result of bad and dishonest science. That there is no plausible alternative environmental vector does not disprove the possibility that there might be one, but it certainly makes it quite remote- especially in the face of far more plausible explanations.

Possible Factor 4: The jump in rates is due to a change in diagnostic habits as autism became an ever more popular fad diagnosis.
As the spectrum of autism widened, it came to include people previously considered to be unusually creative, or normally eccentric, or to have a schizoid or schizotypal personality disorder. Autism is no longer seen as a disabling condition and a wide variety of people have discovered their inner autistic self. Redefined and reinterpreted, autism now castes a wide net catching much milder, everyday problems on the boundary with normality. Once rare and unmistakable, autism is now used loosely to describe people who do not really satisfy the narrow criteria intended by DSM IV. The dramatic swing from false negative to false positive diagnosis has been occasioned by widespread publicity, internet support and advocacy groups, and the fact that expensive school services are provided only for those who are given a diagnosis of autism. Of interest, the Korean study was financed by an autism advocacy group that could barely contain its enthusiasm at the high rates that were reported.

Possible Factor 5: Epidemiological studies always over-report rates.
There is a systematic bias in all large scale epidemiological studies to report as mental disorder even mild presentations of symptoms that may not have any clinical significance. It is entirely plausible that 3% of the population might have a smidgen of autism- completely implausible that so many would have an autistic mental disorder. Rates in epidemiological studies should be seen as no more than a screening upper limit- not a true reflection of the rate of actual mental disorder in the population being studied.

Human nature and the true rates of neurological illness and psychiatric disorder all change very slowly. Environmental toxins are more labile, but generally don't just pop out of nowhere to make a condition 100x more common than it was just 15 short years ago. By far the most plausible explanations for the autism 'epidemic' are factors 1,4, and 5. DSM IV gave autism purchase by introducing a milder form close to the populous boundary to normality. Then autism took flight on the wings of definitional diffusion, internet contagion, financial incentive, and naïve interpretation of epidemiological results. The overall rate of autistic symptoms is probably the same as it always has been since time immemorial- only the naming of them has changed.

Allen Frances, M.D., was chair of the DSM-IV Task Force and is currently professor emeritus at Duke.

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