Autism Unexpected: Revised DSM Criteria for Autism Raise Questions


My son Jack has a diagnosis of PDD-NOS, short for pervasive developmental disorder-not otherwise specified. Basically he’s somewhere on the autism spectrum, often considered to be in the middle between Asperger’s syndrome and classic autism, although individuals diagnosed as PDD-NOS are actually a very diverse group.

According to the DSM-IV, the most current edition of the Diagnostic and Statistical Manual of Mental Disorders and considered the bible of standard criteria for the classification of mental disorders, PDD-NOS is one of five subtypes of autism.

However, once the DSM-5—the upcoming revised edition of the manual—is released, PDD-NOS and its cousins, Asperger’s syndrome, Rett’s disorder, childhood disintegrative disorder and autistic disorder will disappear into an umbrella diagnosis of “Autism Spectrum Disorder.”

The DSM-5 proposed revisions have just been released, sparking discussion on the merits and disadvantages of the changes, which propose to include “severity levels” to differentiate between individuals on the spectrum.

The American Psychiatric Association includes its rationale for doing away with more specific subtypes, claiming that “distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.” What they mean is that individuals less severely affected might be considered Asperger’s not because they meet the specific criteria of the syndrome, but because of their more moderate level of impairment.

The APA goes on to say that “because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category.” This common set of behaviors falls in the domains of social/communication deficits and fixated interests and repetitive behaviors. They also defend the new language with the somewhat bizarre argument that the prior criteria were “equivalent to trying to ‘cleave meatloaf at the joints.’”

I haven’t decided yet whether I agree with the changes or not. Because no one outside the autism community really understands what PDD-NOS is, I already just say that my son has autism. In fact, PDD-NOS can be almost as general a term as autism itself. I don’t know that much will change for him. However, I think calling him “Level 1 ASD” will probably be just as confusing, possibly more so.

However, there are many individuals with autism, particularly those diagnosed with Asperger’s syndrome, who strongly identify with their diagnosis. Many of these self-proclaimed “Aspies” understandably mourn the loss of Asperger’s as a diagnosis. There is definite value in having pride of self-identity.

I doubt that the term “Asperger’s” will wink out of existence once the DSM-5 is published, but I wonder if this will be the last generation of Aspies, without further formal diagnoses. Perhaps informal or self-diagnoses of Asperger’s will add new members to the club.

There has also been speculation that some individuals could lose their autism diagnoses under the new guidelines, and that fewer people will be initially diagnosed. This would cause serious repercussions for children and adults in need of services who would no longer qualify without a diagnosis. Furthermore, girls and women are often overlooked because autism can manifest differently in them. The revised definitions do not address this.

The autism spectrum is already such a vast umbrella, I wonder if there are repercussions to eliminating the stripes that break up the current definition. While sharing much common ground, in many ways, my son is as different from individuals on the very severe end of the spectrum as he is from individuals not on the spectrum at all. Regardless, I certainly don’t object to my son sharing a diagnosis with those on the severely affected end of the spectrum and, in fact, firmly believe that he should.

In the end, there are many ways to be autistic in this world. I wonder if maybe there is value in recognizing that.

Originally published at Autism Unexpected on January 29, 2011.