ASPartOfMe wrote:
Quote:
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.
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.
There was intense blowback by Aspie adults. They had recently finally found an explanation for their troubles and these mean NT’s were snatching it away and leveling the same lazy, spoiled, attention seeking brat charges they always been accused of.
Apparently the blowback was strong enough that people with an old Aspergers Diagnosis were automatically grandfathered into the new ASD diagnosis.
Notice what has not been mentioned as a factor is Hans Asperger’s Nazi complicity. It was barely known at the time the subsuming of the Aspergers diagnosis into the ASD diagnosis being debated and put into effect.
In the ensuing decade Autism prevalence has continued to increase and all that angst about people being “undiagnosed” has apparently has been forgotten. And Aspergers Nazi complicity has been widely reported.
Now we have an urban legend history that is commonly believed that goes like this. Aspergers is a term coined by the Nazis or Hans Asperger himself that is no longer diagnosed because of that “history”.
My opinion now is that the Aspergers diagnosis was correctly eliminated for the wrong reasons.
This is more or less what makes my blood boil. If it's not autism, fine, then what is it? There doesn't seem to have been a similar level of concern paid to the people who do have significant traits, but may fall outside the boundaries in certain directions where the next diagnosis is a rather long distance away and where an autism misdiagnosis is more accurate than the other available misdiagnoses.
As I've come to realize, even if one is outside the bounds by a bit on technical grounds, it does not mean that it can't be severe enough to ruin lives without support and treatment and the "more functional" autistic people are still roughly 9x as likely as the general population to murder themselves. But, I'm sure the fear of misdiagnosis and overtreatment is more important than we are.
It's also worth recognizing that they didn't just take away the AS diagnosis, but the kids that Asperger identified would probably not be diagnosable with anything at this point, even though there is impairment that should be met with support. So, you get these people that are now in the middle of nowhere with no rights or protections that would have previously been allowed at least some level of support and protection. It definitely angers me that they had to grandfather people in to avoid having to be held accountable for throwing people off their diagnosis and yanking back support that a lot probably hadn't gotten when it made the most difference.
For Bleuler's part, in a sense he made things a lot worse by being the guy that coined the term schizophrenia and schizoid, which are both relatively common misdiagnoses for autism.
People are missing an important point in my little history lesson. The attempt to undiagnose autism by eliminating the Aspergers diagnosis failed. In 2012 while Aspergers was still around the prevalence rate was 1 in 68, now it’s 1 in 36. A big issue now is so many kids are getting diagnosed the Autism programs can’t handle it. There are months and years long waiting lists to be assessed and to be accepted. There are not much data for adults but every indication is that many more adults are getting diagnosed then 10 years ago.
03 Aug 2023, 10:53 am
