The One Question We Should Be Asking About the New Autism Definition

Are the proposed changes the result of the pursuit of science — or other interests?

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The proposed change to the newest edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, the DSM5, would do away with the diagnoses of Asperger’s Disorder and Pervasive Developmental Disorder-Not Otherwise Specified as distinct categories of mental illness and fold them instead into a more streamlined umbrella definition of autism.

This may or may not greatly reduce the number of children who in future years will be diagnosed on the autism spectrum.

It may or may not have a major impact on how many children qualify for free public school accommodations or state or private insurance reimbursement, for autism-related services.

But what it most definitely will not do is resolve or even meaningfully impact the question that obsesses so many journalists, as well as other casual commentators who have no direct contact with or specialized knowledge of autistic children and their parents: “where to draw the line between unusual and abnormal,” as Benedict Carey of the New York Times put it yesterday, in his article on a new study from the Yale Child Study Center that suggests that the new redefinitions will, in fact, exclude many children at the less-impaired end of the spectrum from an official autism diagnosis.

(MORE: Ending the Autism Epidemic: If the Definition Changes, Will Some Kids Lose Services?)

Perseverating over the definition of that dividing line — what it means and how it has changed and what its positioning says about our society and, in particular, about the anxious parents, is one of the favorite pastimes of cultural observers. It’s an endless source of concern for school districts, who have to come up with vast amounts of money to fund services for children on the autism spectrum, as well as for the parents of mainstream kids, who feel that whatever dollars are spent on those with special needs is money not being spent on their own deserving offspring. Yet it’s a quandary of virtually no interest whatsoever for the thousands of families currently on waiting lists trying to find services for their unarguably struggling kids.

The discussion of what autism truly is or isn’t has to play to these two very distinct constituencies, Nestor Lopez-Duran, an assistant professor in the department of psychology at the University of Michigan, noted in a tightly reasoned blog post on the proposed changes to the DSM-V last year. It thus by necessity has two components: the “political/social issues associated with the change,” as he put it, and the “scientific/clinical basis” for the proposed move. But the psychiatrists advising the APA on changes to the DSM aren’t meant to be operating on both those registers. Their recommendations are supposed to further the pursuit of science — in this case, and at this time, by aiming to figure out what the core brain processes involved in autism really are, with the goal of weeding out red herrings and moving toward more finely-tuned research, all this in service to the even greater goal of developing the best possible treatments.

(MORE: Warner: Getting Distracted from the Real Issues of ADHD)

One can only hope that these have indeed been the motivations behind the current proposed redefinitions: that they haven’t, in fact, resulted from academic in-fighting, battles for resource allocation or clashes of the sorts of titan egos that tend to dominate in science, even when it’s conducted in the public interest. After all, at the end of the day, the definitions are valuable only if they meet one very basic, if somewhat pedestrian, criterion: getting kids who need help the best help that exists. All the rest, however fascinating, is just talk.

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