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Joined: 25 Aug 2013
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14 Jul 2021, 9:18 am

Mona Pereth wrote:
Technic1 wrote:
They managed to separate it before.

With great difficulty, at least when diagnosing adults.

The former distinction between autism and Aspergers made sense for young children only. The main difference was the age at which one learns to talk (if one is able to talk at all). This meant that if you were getting diagnosed as an adult, or even as an older child, the evaluator had to know exactly how old you were when you learned to talk -- and it was often difficult to determine this in a reliable way.

So it was eventually decided that it made more sense to classify autism severity levels based on current functioning only, rather than on one's past history, and to treat any language/speech difficulties as a separate dimension from autism severity per se.

Clinicians often do not literally follow the manual. What was Aspergers often depended on the clinician doing the assessment. Aspergers generally became high functioning/mild/semi-normal autism. This lead to the feeling Aspergers was being over diagnosed causing insurance companies and schools to lose money.

Why Claim Asperger's is Overdiagnosed - Psychology Today 2012
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.

Proponents of the over-diagnosis argument don’t provide supporting data. That’s because there aren’t any. On the contrary, Francesca Happe, a member of the relevant DSM-5 workgroup, referred in a 2011 editorial to studies indicating “clinicians show good agreement about who falls within versus outside the autistic spectrum.”

It’s true that as a society we are given to casual overdiagnosis, if inexpert speculation about celebrities can be called diagnosis. A recent New York magazine feature cited public discussion of the Aspergerian nature of numerous contemporaries, starting, in nonpartisan fashion, with Mitt Romney and Barack Obama. I have my reservations about such diagnostic speculations.

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.

While there was truth to both the stated reason of inconsistent diagnosis and as Mona stated the differences in early language communication is irrelevant to most autistics now these truths provide a convenient cover for the real reasons the Asperger diagnosis was eliminated.

While the fear that Aspergers was being taken away for cost reasons and over diagnosis was a big issue in the Autistic community at the time it has been almost been completely forgotten and the inconsistent diagnosis and Hans Asperger Nazi complicity are main cited reasons today. I have a few theories as to why. First while the sharp increases in ASD diagnosis have leveled off the fears of massive under diagnosis, and people losing their diagnosis have been unfounded. That was in part because the manual stated all people diagnosed using the prior manuals would have their diagnosis carry over to the new Autism Spectrum Disorder label. The other was revelations of Hans Asperger’s Nazi complicity. It is popular belief that that was the reason Aspergers was dropped. It was not those revelations came later on. What the revelations did do was kill any hope the Aspergers diagnosis is going to come back(It wasn’t). Bring back a label named after a guy complicit with the Nazis? In this iconoclastic era, not a chance.

On a personal note my user name “ASPartOfMe” references Aspergers. That was where I was at the time. The software does not allow me to change my username. If I was joining WP today my user name would be “AutisticSince1957”. But it is probably just as well that I can’t change my user name. After almost 8 years here that would cause a lot of confusion.

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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14 Jul 2021, 12:00 pm

Asperger's still is being overdiagnosed, especially in adults. Check out my thread in Members Discussion, titled "Is this Asperger's? - long post" or something like that.

It seems that people with depression or anxiety or shyness are being diagnosed with Asperger's. So if that's so, where does the line draw between autism and allistic?

Aged 31
On antidepressants
Have ASD, ADHD and anxiety disorder
Empathy score: 61 out of a possible 80. (High)

Harry Haller
Snowy Owl
Snowy Owl

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14 Jul 2021, 5:38 pm

DSM crew blew it.

Think about it:
What is the purpose of diagnosis?

There are two:
1. Allow clinicians to communicate with each other precisely;
2. Treatment and prognosis.

In the first, suppose I said: "it is a motorized vehicle" - minimally helpful.
How about: "motorized land vehicle" - better.
How about: "1968 Corvette" - wow, suddenly it is very clear. Performance, requirements, limitations all known as well.

In the second, "Difficulty breathing" - okaaay, is it "foreign body obstructed airway," "anaphylaxis," "congestive heart failure" or "cyanide poisoning" --because the effective treatments differ.

So they should have examined with more precision and attempted to suss out the remainder of the autism spectrum.

"Asperger's" will be separated out in the future, but be named something else because of the baggage Asperger brings.

(Oh, and history is important and legitimate for diagnostic criteria across medical practice. Why else is history gathered in exam? Why the age 12 cutoff for ADHD, if only "current symptoms" are game, for example.)

Benjamin the Donkey

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14 Jul 2021, 6:06 pm

ASPartofMe-- I like using "AS" because is can stand for both "Asperger Syndrome" and "Autism Spectrum".

"Donkeys live a long time. None of you has ever seen a dead donkey."


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Joined: 15 Jul 2021
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16 Jul 2021, 4:01 pm

Having been born 20 + years before Autism and Aspie were common terms, I truly have extreme disdain for those who try to push my square peg through a round hole. :|