Abandoning Asperger"s for ASD

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Lorna Wing, the person who coined the term Asperger's Syndrome or Disorder, later apologized for it. She said that she should have called it Autism from the beginning.

Here is the heart of the problem: Hans Asperger both cared for Autistics and abused them. He was also a nazi sympathizer. The information, from reliable news sources and peer-reviewed articles, is all over the web. I have known about that for a long time. As a result, I never called myself an "aspie." My Autism, as a child, was also much worse than what that term would imply.

This is a personal plea to abandon Asperger's Syndrome or Disorder, dropped from the DSM-5 and the ICD-10, in favor of Autism or ASD.

https://www.bps.org.uk/psychologist/aft ... ger-expose

I agree. It should be the individual's choice if s/he was originally diagnoses Asperger's.

Ironically "Autism" the preferred terminology has a problematic history of its own. Eugene Bleuler the person who coined the term Autism was a rabid and influential eugenicist.

I agree. It should be the individual's choice if s/he was originally diagnoses Asperger's.

That is true. But there is no Bleulerism. My problem is being identified with the name of a monster.

That's a tough call because a significant minority of people diagnosed with AS aren't ASD or SPCD either and were only allowed to keep their diagnoses to avoid the situation where people were being literally thrown off the spectrum. So, AS may be the only accurate diagnosis, even though it's not a currently valid diagnosis. In those cases, they might get an ScPD diagnosis, but even that's a bit of a stretch as the diagnosis seems headed further away from the various recognized forms of autism and more solidly in the schizophrenia spectrum.

According to the DSM-5 and the DSM-5-TR, anyone who was diagnosed with Asperger's Syndrome would automatically be ASD. I am not sure about the ICD-10, but generally the manuals follow each other.

Incidentally, last night I was reading through the original text of the DSM-5-TR, and, for ASD, the diagnostics are the same as for the DSM-5.

In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger's clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.

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.

Of course, people should have a right to choose. Well, that is if they familiar with the possible choices. However, after I have told some people about Hans Asperger, they were horrified.

Sort of, they had to have an established treatment plan in place, and wouldn't actually qualify for any sort of diagnosis under the current standards. It was basically just a way of buying people's silence. It's really pretty disgusting that people don't get access to any protections or rights under the law if they were potentially evaluated a mere few months apart, even if they have the same symptoms and the same severity and the same need for help. They flat out wouldn't qualify for any help at all. So for those of us that didn't know this was coming, we got left out in the cold without any legal right to accommodations as we don't have anything that can be diagnosed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8463351/

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.