Un-Diagnosing Asperger's

There has been a loud and increasing outcry about the proposed redefinition of autism for DSM V. In that redefinition, autism, Asperger’s, and PDD NOS will be combined to form one diagnostic label of ASD – autism spectrum disorder.

In my earlier essays on this topic, I suggested that people’s alarm was perhaps unjustified because I could not imagine health care professionals taking away a diagnosis that was allowing a person to receive useful treatment or therapy.

Yet that very worry seems to be the propagating rapidly throughout cyberspace . . . Indeed, that is exactly what may happen, if what these doctors believe comes to pass:

One psychiatrist (Volkmar) suggested up to 75% of the Asperger population would not qualify for the ASD diagnosis.

Another doctor (Siegel) said she un-diagnoses 90% of the Asperger kids who come to her today.

Conspicuously missing from both those statements is the second part . . . if the psychiatric community proposes to un-diagnose this large population of PDD NOS and Asperger’s, what do they propose to diagnose them with instead? Something (I’m waiting . . .) or nothing?

If the expectation is that these “former Asperger people” will be diagnosed with something else that will qualify them for a sufficient level of effective services, it’s high time we hear what that new diagnosis might be. I have yet to hear of any “replacement Asperger’s” for this population.

There is talk of Social Communication Disorder, but I am not aware of any broad array of services that might be associated with that diagnosis, if indeed it is an expected substitute.

Most people are diagnosed with Asperger’s or PDD NOS as kids. Once the diagnosis is given, those kids receive social skills therapy and other help in fitting in. Everything I hear from the field tells me the therapies are life changing for the people involved. When I hear complaints, they usually are that the level of service is insufficient. Conversely, I have never once heard of excessive treatment for Asperger’s. Are we now proposing to take those services away from today’s Asperger population and others like them in the future? What would be the justification for that?

I can imagine no reason except short term cost savings, which benefits health insurers and school districts. While administrators of those organizations lobby from a different perspective, there is a widespread belief that these groups are already failing to deliver what's needed, in terms of support services. Is the DSM definition being perverted into a tool to save these people money when they are not doing their jobs adequately and effectively now?

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.

The concept that a large population, who has a disability diagnosis today, might lose that diagnosis and access to the resultant services as a result of DSM changes is both shocking and unprecedented.

When I originally heard about this proposal, my understanding was that the new diagnostic umbrella would cover all those with prior ASD diagnoses. Believing that to be true, I supported the redefinition for the various reasons I've already articulated. Now, I wonder if it's time to rethink that endorsement.

It seems like the medical and therapeutic community is sharply divided on this issue. Many still take the stand that I expected, which is that a kid with an ASD diagnosis today, who benefits from services as a result, should be a kid with an ASD diagnosis in DSM V land. For those who believe we would be right to un-diagnose some large percentage of the ASD population, what would you say to the people you propose to un-diagnose?

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Un-Diagnosing Asperger's

John Elder Robison

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