What’s in a name? The change in the definition of autism

Although the changes in the upcoming Diagnostic and Statistic Manual, 5th edition (DSM-5) are sweeping enough that it has taken over a decade to plan and six years to create and approve, no change seems to have the public profile as the change in the definition of autism. Long before I actually intended to teach a class in atypical development or even a single lesson on it, I encountered stories in the New York Times, news aggregators, and parenting blogs protesting the changes, a debate that continues after the criteria have finally been officially approved, even though no one is supposed to lose their old diagnosis.

For those not fully enmeshed in the nuances of psychiatric diagnosis, the big strokes of the changes are fairly straightforward: Autism used to be a triad of main symptoms: poor social skills, delayed or different language, and “repetitive/restricted behaviors” (rigid adherence to routine and rituals, or focus on parts of objects instead of the whole thing). It had to appear before a child turned 3, and Asperger’s was a separate diagnosis for those who were relatively high functioning with no language delays. Now, the autism triad has melded into a duet of “social interaction and communication” deficits plus those restricted and repetitive behaviors, the symptoms should have been present in early childhood but you might not be diagnosed until much later, and Asperger’s no longer officially exists.

These big strokes don’t capture the nuances of the changes, which are part of the specific symptoms and criteria that must be met to say that you have both categories of behavior. The primary concern is that these new criteria will mean that people previously diagnosed with autism will no longer matter the criteria, particularly those who are higher functioning; more recent reports suggest that only those who should be excluded will be excluded, but the truth is we won’t know what impact these changes have until they’re actually put into practice.

What we can do, based on all these changes and concerns floating out in the Internet – and what my Atypical Development students did do, to celebrate all they learned over the semester – is think about what the role of the DSM, and of psychology in general, is supposed to be.

I make this analogy: Our justice system (in theory) operates on the principle that it is better for 100 guilty people to go free, than for one innocent person to be put in jail. So should psychology operate on the principle that it is better to let 100 atypical children slide through the cracks, than to have one neurotypical child be given a misdiagnosis; or the principle that it is better to give 100 neurotypical  children a diagnosis they don’t need, than to have one atypical child left without services?

My students tend to fall on the side of handing out diagnoses like Halloween candy, thinking that it can’t hurt. They are very swayed by the argument that you must have a DSM diagnosis to get services (special education plans, group housing, anything federally funded), and want to make sure anyone who possibly needs services will get them. This starts to shift when we talk about the potential risks of children taking that false label to heart, or overwhelming those “services” with so many diagnosed children that no one is getting the attention they need.

What it boils down to, in my mind, is the question of what is psychology’s fundamental responsibility in defining and diagnosing “disorders”? That responsibility is not, as Temple Grandin has suggested, to respect the existence of  self-identified communities such as “Aspies”.

The responsibility is also not to ensure that patients qualify for particular school services or federal funding – I would liken that to the misappropriation of social security numbers as de facto national ID numbers; someone took a pre-existing label and used it far beyond its original purposes, but that doesn’t make the original labeler responsible for that misuse. In my perfect world, K-12 educators would make the salary we current reserve for major league athletes, and teach classes of no more than a dozen students, in which case many of those school services would become moot, and it wouldn’t matter what label a child did or didn’t have. Somehow society has declared teaching an unworthy profession, and has had to set an incredibly high bar (official psychological diagnosis) for students to get the help they deserve – but psychology as a field can’t solve that problem.

Psychology’s primary responsibility is to the patients and parents who seek help – not to stamp them with a label they can take somewhere else, but to actually help them understand what’s going on in their minds, and recommend whatever treatment path might help them get their minds where they want them to be. To do that, we need clearly defined diagnoses, so that when someone comes to a treatment plan with a label of autism, everyone knows what that means, and that others who have the same label will have very similar characteristics. Whenever we try out a therapy or other treatment with children labeled “autistic” who shouldn’t be, we lose the power to detect whether that treatment helps or not; the same problem applies when we try to find out what causes autism to begin with.

Whether the new DSM-5 criteria actually accomplish this is another question entirely; I have to rely on the experts, who just approved the changes. I hope that the new definition will help us understand autism better; of course, I also hope that some day in the future autism will follow the path of homosexuality out of the DSM entirely, as we come to recognize it as a difference not a disorder. I wonder how controversial that decision would turn out to be, then.

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