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nominalist
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01 Aug 2023, 9:05 pm

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


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02 Aug 2023, 7:05 am

nominalist wrote:
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 think it should be left up to the individual and we should not hassle those who still prefer Aspergers or Aspie. When I first started out discussing autism in nearly every online conversation some NT would correct us for using identity-first language to describe ourselves. Researchers and media were universal in using person first language. Since then I am loath to do the same thing to others.

I was diagnosed in 2013 just as the DSM was eliminating the Aspergers diagnosis. I was strongly against that change. When the revelations came out about Hans Asperger I stopped identifying as an Aspie. Since that time if a thread is about Aspergers or Aspies I go along with that terminology.

I have not canceled Aspergers. That label was a massively positive part of my history. But that is what it is now my history, not my current. Fortunately for me, I always viewed Aspergers as sub-category of Autism so the change was not as difficult for me as for those who view it as a separate condition.

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.


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02 Aug 2023, 7:11 am

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


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02 Aug 2023, 7:34 am

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

Also if they are self-diagnosed or diagnosed with something else. If they are wrong it will hurt them not you or me.


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nominalist
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02 Aug 2023, 8:47 pm

ASPartOfMe wrote:
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.


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


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nominalist
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02 Aug 2023, 8:49 pm

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


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.


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02 Aug 2023, 8:58 pm

Error. Please ignore. I posted the first part of the message. Then I went on to post the full message. :D


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Last edited by nominalist on 02 Aug 2023, 10:39 pm, edited 2 times in total.

nominalist
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02 Aug 2023, 9:00 pm

nominalist wrote:
ASPartOfMe wrote:
Also if they are self-diagnosed or diagnosed with something else. If they are wrong it will hurt them not you or me.


Sometimes. I will not names. To be honest, I don't even remember her/his name. It could be a mental block for all I know.

However, years ago, there was a self-diagnosed autist who went around viciously (no exaggeration) attacking other members of this forum. Some other oldies may remember the person.

When she/he was confronted, she/he blamed her/his behavior on her/his obviously nonexistent Autism. (I should note here that I am not qualified to officially diagnose her/him.) For some reason, I was one of many, many people on her/his enemies list.

Such is life. Sadly, there was also no way to block other users at that time. The quality of Wrong Planet has improved more than once since then.


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02 Aug 2023, 10:08 pm

nominalist wrote:
ASPartOfMe wrote:
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.


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.



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02 Aug 2023, 10:29 pm

MatchboxVagabond wrote:
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.


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02 Aug 2023, 11:45 pm

nominalist wrote:
MatchboxVagabond wrote:
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.

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/



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03 Aug 2023, 2:53 am

A history refresher is needed at this for a number of reasons. Here is an overview.

Bleuler coined “Autism” as a symptom of childhood schizophrenia. For the next few decades Autism was used by clinicians in this way. Leo Kanner said my patients differ in enough ways from schizophrenia that they have a seperate condition called “Autistic Disturbances of Affective Contact”. In Austria at around the same time Hans Asperger
was coining “autistic psychopathy”, it involved a broader range of people then Kanner’s Autism.

In the late ‘70s Lorna Wing did a prevalence survey and realized there was a category of people impaired by Autistic traits that did not meet the diagnostic criteria of Autism of that era. She proposed Asperger Syndrome not for scientific reasons but for branding reasons.

Asperger syndrome: a clinical account

Quote:
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.

In other words Aspergers was an Autism diagnosis without the ret*d stigma. Through her lobbying eventually Aspergers Syndrome was added to manuals. What Wing and those who put Aspergers Syndrome in the manuals could not have anticipated was the emergence of the World Wide Web which parents and later adults used to connect the dots. What followed was the explosive growth of ASD prevalence, the neurodiversity movement and the sub part Aspie identity movement. During this time most clinicians viewed Aspergers as Mild/High Functioning Autism.

The rapid growth in Autism diagnosis caused alarm. The introduction of Aspergers syndrome was blamed. This was laid out by members of the DSM clearly in this 2012 Psychology Today article.

Why Claim Asperger's is Overdiagnosed?
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.


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03 Aug 2023, 8:39 am

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.



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03 Aug 2023, 9:26 am

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


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.
That is fine as well. I still use the term Asperger's sometimes even though he was who he was. I identify as Autistic because of the severity of my symptoms but even though I think Nazis are horrific, evil, and satanic, I don't have an emotional association with the term Asperger's Syndrome. But I respect that each person has the right to feel however s/he wants about it.


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03 Aug 2023, 9:30 am

MatchboxVagabond wrote:
nominalist wrote:
MatchboxVagabond wrote:
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.

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/
Wow, this is terrible.


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03 Aug 2023, 10:32 am

MatchboxVagabond wrote:
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.


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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