ASPartOfMe wrote:
MatchboxVagabond wrote:
Anyways, the term itself is one thing, it's the lack of a proper diagnosis to cover the ground that it covered that's the big issue, and with Schizoid Personality Disorder likely to also disappear, it's pretty much inevitable that there won't be any research or resources that get directed to what was probably always a separate thing from both autism and Schizophrenia.
It always infuriates me when I see various people claiming that the change was made to be more inclusive, when that's not at all what happened nor is there any good evidence that it was even intended to ensure more coverage and support.
The change was made to be exclusive.
I think that much is pretty clear. I see people claiming that the spectrum is wider than it used to be, but that's really only in the sense that autistic disorder was considered to be autism at the time and now there are other things being rolled into that. But, the total area that it covers is, as you're pointing out, narrower than the combined spectrum of all the constituent diagnoses with people previously diagnosable with autistic disorder and AS being particularly hard hit in terms of being undiagnosed.
It may conceivably have made it easier to get help if you still qualify for a diagnosis, but it made getting diagnosed even harder. Especially folks like me that have had to go through a series of evaluations due to the rules about comorbidities. I couldn't get an ADHD diagnosis due to the OCD diagnosis, and it's been a struggle to get any sort of ASD related diagnosis because I already had diagnoses for OCD, ADHD and most of the Schizophrenia spectrum disorders, but getting appropriate help with the autistic traits has historically just not been available due to the way the resources get allocated, even though the stuff I would need is pretty cheap to provide.
ASPartOfMe wrote:
Why Claim Asperger's is Overdiagnosed? - Psychology Today 2012Quote:
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.
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.
What always gets me about that is just how careless that process of rewriting the criteria was, and that they wound up fossilizing some errors that had been made when the DSM IV was actually published. There's also this massive gap that doesn't get any sort of a diagnosis despite a lack of any evidence that people in that gap don't have significant impairment that requires help of some sort.
The worst of it is that the people most likely to have had their eligibility yanked as a result are disproportionately those with significant support needs and those that would probably be able to manage on their own with appropriate access to information and tools. Much of which has become rather cheap these days. I can easily set my android phone to set a timer to end at a certain time with a label to indicate what it's supposed to be reminding me of with Gemini and the phone itself only cost me $300 several years ago.
06 Jun 2025, 6:33 am
