When the DSM-5 was released in 2013, Asperger’s and PDD-NOS were eliminated as separate conditions that children could be diagnosed with. The criteria for an autism diagnosis also changed.
The new criteria collapsed what were three separate categories of behaviors into two: persistent deficits in social communication and social interaction, and restricted, repetitive patterns of behavior. They also reduce the number of symptoms within each category while increasing the number required for diagnosis, effectively limiting the “menu” and, to critics, making the diagnosis more restrictive.
Others argue that any fall off in diagnosis should be very modest, or perhaps diagnoses might even increase under the DSM-5 criteria. Many experts have said the revisions are not at all intended to kick people off the spectrum, but rather fine-tune the diagnosis so it is more useful and representative of data gathered over the past 20 years.
Reaction from the Asperger’s community
This uncertainty—the real sense that investigators are figuring out the new diagnosis as they go—does not sit well with some members of the very passionate community of parents of children with Asperger’s and adult Aspies themselves. The diagnosis is the basis for important treatment like applied behavioral analysis and school services. “As a parent of a child who is diagnosed with high functioning autism the possibility of losing his designation overwhelms me,” one parent wrote in the Times comments section. “Monsters. Pure and simple,” quipped another commenter. From another parent: “These ‘experts’ need to take a step back and look at whose life they are about to change!” Many also worry that removing the Asperger’s diagnosis will seriously impact the sense of identity of some in the autism community even if does not result in reduced services.
Catherine Lord, PhD, a member of the task force that revised the diagnosis and director of Weill Cornell Medical College/ NY Presbyterian Hospital Institute for Brain Development, says the intent was not to undo the old manual. “We didn’t start out criticizing DSM-IV,” she says. “It just feels like we can move beyond it. The intention of the new criteria is to include everybody who has a carefully diagnosed ASD,” not exclude the majority of them. “That was not part of the intention and there is no evidence that that is true. There’s just none.”
In 2012 Robert Hendren, DO, the director of child and adolescent psychiatry at the University of California, San Francisco, said he was sad to see Asperger’s go. “At first I wondered if the APA would back down and the committee would back down on making the change,” he says. “But the first meeting they had of that committee they presented the evidence, and it’s just so strong, that you can’t make these distinctions” between Asperger’s and PDD-NOS and autism.
What is that evidence? For one, Dr. Lord conducted a study across multiple sites, with thousands of subjects, looking at the diagnostic accuracy of the DSM-IV. “Asperger’s diagnosis in the 12 sites was predicted by who saw you,” she says, a troubling result. “There was also a social class factor in a couple of sites. So upper-middle class parents got kids with Asperger’s. The same kid with the same characteristics with less educated parents ends up as PDD-NOS. This is not good.”
“Medically and scientifically there’s just no justification for having the separation between Asperger’s, PDD-NOS, and autism,” she concludes. In the end, Dr. Lord says the task force was not trying to be “provocative” at all, and the benefits of the new diagnostic criteria are clear. “We’re just saying here are more examples organized in a different way, that we think will identify people with ASD and do a better job of not identifying people who don’t have ASD.”