The lasting repercussions of the loss of Asperger's

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In US it has been transmogrified to ASD level 1; level 2 is with a more noticeable intellectual disability. To obtain benefits, one has to be a level 2 with certain criteria. The forementioned move within those agencies tells the NT world that Asperger's is something mild, just some quirks -and who doesn't have quirks...-, and downsizes the hardships. It is within the realm of possibility that this had lobbying/cease benefits driven motivation aka running autistic society like an insurance company. d e n i e d !

While the American Psychiatric Association insists that “un-diagnosing” is not its goal, there is little question that a purpose of its DSM changes is screening out those who may not be “definitively” autistic. Members of the committees charged with the autism revisions have reverted to this theme again and again, often in unguarded moments.

Although the clinical understanding of autism influences casual conversation, casual conversation should not influence the clinical understanding of autism. And yet it so frequently does. The overdiagnosis argument, in which Asperger syndrome is accused of a major role in the alleged over-medicalization of the American population, is a prime example. It is particularly unnerving when it comes from DSM-5 professionals, since it suggests pre-emptive justification for “undiagnosing” a significant cadre of autistic people. (Some of those professionals prefer to blame Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, for the public anxiety.)

In February, science writer Emily Willingham delivered an intricate critique of the flabbery jabbery coming from some of these autism “experts”: anecdote cited as evidence, opinion as certainty. A less measured commentator accused the DSM team of pseudoscientific delusional syndrome. Some of the overdiagnosis comments sampled below have achieved notoriety in the autism community, but still, the Asperger’s Alive! archive would be remiss not to include them. And its worth remembering that social communciation and Theory of Mind present challenges for some autism researchers.

Susan Swedo, chair of the DSM-5 neurodevelopmental disorders workgroup, said in May that many people who identify with Asperger’s Syndrome “don't actually have Asperger's disorder, much less an autism spectrum disorder.”
David Kupfer, chair of the task force charged with the DSM revisions, blurted to the New York Times in January: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger Disorder. It involves a use of treatment resources. It becomes a cost issue.” (This was startling to those who’d missed the memo that declared costs and treatment resources the responsibility of the APA. Which was everyone.)

Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital, and another member of the workgroup, told Scientific American in January, “If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS... We need to make sure the criteria are not pulling in kids who do not have these disorders.”

Paul Steinberg, a D.C. psychiatrist, declared in a New York Times op-ed in January that “with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers” are erroneously and harmfully labeled autistic. He blamed a 1992 Department of Education directive that “called for enhanced services" for children diagnosed with autism spectrum disorders: “The diagnosis of Asperger syndrome went through the roof."

Dr. Bryna Siegel, a developmental psychologist at the University of California, San Francisco, told a Daily Beast reporter in February that she “undiagnoses” nine of out ten students with so-called Asperger’s. Siegel was a member of the panel responsible for the inclusion of Asperger’s in the DSM-IV, which the reporter cited to me in a phone call as evidence of Seigel's objectivity: implicitly, Seigel is critiquing her own work. But that same journalist made no mention in the piece of Dr. Seigel’s history as an expert witness for school districts fending off families’ claims for those “enhanced services,” and the obvious conflict of interest (as well as the selection bias in her client pool) this represents. In October, she told New York magazine that she undiagnoses six out of ten. That's quite a shift in eight months. Hope it was evidence-based.

In US it has been transmogrified to ASD level 1; level 2 is with a more noticeable intellectual disability. To obtain benefits, one has to be a level 2 with certain criteria. The forementioned move within those agencies tells the NT world that Asperger's is something mild, just some quirks -and who doesn't have quirks...-, and downsizes the hardships. It is within the realm of possibility that this had lobbying/cease benefits driven motivation aka running autistic society like an insurance company. d e n i e d !