The DSM-5 and the elimination of Aspergers 10 years later
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ASPartOfMe
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04 Jun 2023, 9:11 am
Debate remains over changes in DSM-5 a decade on
Quote:
Just over 13 years ago, when the draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was released, debates erupted almost immediately. Many of them centered on the manual’s folding of Asperger syndrome into the autism spectrum disorder definition and concerns that some autistic people would be excluded from services under the new guidelines.
In the years since, things on that front have mostly “settled down,” according to Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. But even as old debates die out, the past few years have seen a new one spring up: whether the term “profound autism” is a useful way to differentiate some members of the spectrum. That has parts of the autism community again eyeing the DSM-5, hoping for a revision and additional clarity for clinicians.
But the story of how the DSM-5 came to say what it does suggests a tough road ahead. It took years of collaboration between autism researchers and a fledgling group of autistic self-advocates. And to those closest to the matter, it’s not even clear there will be a DSM-6.
The American Psychiatric Association (APA) publishes and maintains the DSM. The prior major update to the manual was done in 1994, and in 2007 the APA gathered 13 work groups to overhaul diagnostic criteria and update accompanying scientific information to create the DSM-5.
When Ari Ne’eman, co-founder and then-president of the Autistic Self Advocacy Network (ASAN), and his colleague Steven Kapp heard that there would be major changes to the criteria for autism for the fifth edition of the DSM, they knew what was at stake.
Ne’eman and Kapp, who was then a doctoral student and ASAN chapter co-director, understood that whatever was laid out in that book would affect the lives of autistic people for years to come, just as it had when DSM-IV was released.
Yet the two men also knew they were being presented with an opportunity. Updating the diagnostic guide is at its core an academic process, but also a “political” one and therefore subject to influence, Kapp and Ne’eman wrote in a book chapter in 2020. Getting a diagnosis is a critical point in an autistic person’s life, and ASAN wanted to help shape the process.
ASAN, however, was on the outside. The Neurodevelopmental Disorders Work Group’s purview included autism, and the APA appointed its members — all vetted researchers in the space. This did not sit well with Kapp or Ne’eman.
The relationship between ASAN and the work group was “complex,” Kapp and Ne’eman wrote, but it was also “historically significant,” as the two men knew of “no prior example of successful advocacy to refine and improve diagnostic criteria from the community subject to it.” Indeed, Ne’eman is officially listed in the DSM-5 as an adviser to the Neurodevelopmental Disorders Work Group, along with more than a dozen researchers.
The two groups did not see eye to eye on every topic, but they shared an ambitious goal: to fold the diagnoses of Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into the autism spectrum disorder diagnosis.
After some three years of lobbying, ASAN failed to convince the work group to reduce the number of social-communication sub-items needed for autism diagnosis. But it achieved its goal of excluding recovery criteria from the DSM-5, and, most importantly, the definition of autism was united: Gone were Asperger syndrome and PDD-NOS from the landscape.
The work group also added a new condition called social communication disorder (SCD), which some felt was meant to help address fears that the loss of Asperger syndrome and PDD-NOS would create a gap.
But the end result of these changes is that today autism is being used to “describe an incredible range,” Lord says. That in its own right has only led to more confusion — the exact opposite of the intended effect of collapsing autism into one diagnosis.
Questions of diagnosis and identity swirl in the autism community. Some, such as Alison Singer, president of the Autism Science Foundation, suggest a need to return to the days of the more divided spectrum that was in the DSM-IV. Swaths of others say this suggestion is merely “weaponizing” autism’s heterogeneity, as Mary Doherty, founder of Autistic Doctors International and Autistic Med Students, wrote in Spectrum in 2023.
When a draft of the DSM-5 was released in 2010, the removal of Asperger syndrome as a separate diagnosis quickly drew attention from not just academics, but the general public. Members of the work group felt it necessary to explain their decision.
ASAN agreed with this, believing that folding all three conditions into one diagnosis would help eliminate the stigma of an autism diagnosis versus an Asperger diagnosis.
But there was also a sense that something had been lost. Sandra Jones, writing in Spectrum in 2020, said her research found that for many, “Asperger syndrome is more than a diagnosis. It is an identity.”
There was also fear that the diagnosis of autism would become too narrow without Asperger syndrome or PDD-NOS included. In 2012, Volkmar gave a presentation at a meeting in Iceland that used previously collected data to show that many people diagnosed with Asperger syndrome or PDD-NOS would not meet the DSM-5 criteria for autism.
The water around inclusion data is still murky. A meta-analysis from 2019 indicated that the change to the DSM-5 criteria did lead to fewer diagnoses of autism among some who would have been diagnosed with Asperger syndrome, but at the same time, the prevalence of autism in the United States has continued to climb, with experts saying one reason for the increase is better screening and more accurate diagnoses of children.
The DSM-5 offers additional specifiers for autism diagnoses, too, including “with or without accompanying intellectual impairment” and “associated with a known medical or genetic condition or environmental factor.”
But the specifying terms have not been effective, Lord says. “Nobody uses those,” she says. “I mean, it’s just not practical to have long phrases.” In the end, the levels ended up “almost tautological,” Lord says, and should be improved to be more evidence-based.
The ongoing debates have raised hopes in the broader autism community that some issues might be resolved in a DSM-6.
In the decade since the release of the DSM-5, Ne’eman and Kapp have both stepped away from ASAN leadership. Ne’eman, who could not be reached for an interview despite Spectrum’s multiple attempts to contact him, is a doctoral student at Harvard University. Kapp, who is senior lecturer of psychology at the University of Portsmouth in the U.K., declined to be interviewed.
ASAN stands by its position on the DSM-5 from 10 years ago, says Zoe Gross, ASAN’s director of advocacy. “We are still definitely in support of the unified diagnosis, which has eliminated a lot of confusion and clinician-by-clinician variation in the diagnostic process,” Gross says. Of a DSM-6, she says, “we would want to see criteria that reflect autistic people’s experiences, not just outside observations of autistic people.” An example of something that could be included, she says, is more about motor issues. “Autistic people discuss experiencing issues with movement and motor planning beyond what is described in the current criteria, including ‘getting stuck’ or catatonia,” she says.
But it isn’t clear a revision is coming, even 10 years after the previous update.
Michael First, professor of clinical psychiatry at Columbia University, was an editorial and coding consultant for the DSM-5. There were nearly two decades between the publication of the DSM-IV and the DSM-5. When asked if 6 is being considered, First said it’s “an amazingly excellent question.”
After the release of the DSM-5, the APA decided to move to a new model of updating the guide, one that is iterative and more nimble. It’s possible that the APA will consider a DSM-6 if diagnostic criteria need major changes. But for now, suggested changes are submitted online and reviewed by a small committee of experts. If the proposed change is accepted, it is posted for public comment on the APA website. Indeed, in 2022, a formal text revision of the DSM-5 was published, which included small clarity changes to the autism entry. So far, this process is “working pretty well,” First says, and there are “no plans” for a DSM-6, though he says “the door is open.”
Regardless, some, such as Volkmar, think that maybe a book isn’t the way forward anyway. He is pinning his hopes on finding viable biomarkers that have not yet been discovered, though not for lack of trying. For her part, Lord agrees that “we need ways of better acknowledging the very different set of circumstances” of each autistic person, “but I don’t know how that fits into a DSM-6.”
In the years since, things on that front have mostly “settled down,” according to Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. But even as old debates die out, the past few years have seen a new one spring up: whether the term “profound autism” is a useful way to differentiate some members of the spectrum. That has parts of the autism community again eyeing the DSM-5, hoping for a revision and additional clarity for clinicians.
But the story of how the DSM-5 came to say what it does suggests a tough road ahead. It took years of collaboration between autism researchers and a fledgling group of autistic self-advocates. And to those closest to the matter, it’s not even clear there will be a DSM-6.
The American Psychiatric Association (APA) publishes and maintains the DSM. The prior major update to the manual was done in 1994, and in 2007 the APA gathered 13 work groups to overhaul diagnostic criteria and update accompanying scientific information to create the DSM-5.
When Ari Ne’eman, co-founder and then-president of the Autistic Self Advocacy Network (ASAN), and his colleague Steven Kapp heard that there would be major changes to the criteria for autism for the fifth edition of the DSM, they knew what was at stake.
Ne’eman and Kapp, who was then a doctoral student and ASAN chapter co-director, understood that whatever was laid out in that book would affect the lives of autistic people for years to come, just as it had when DSM-IV was released.
Yet the two men also knew they were being presented with an opportunity. Updating the diagnostic guide is at its core an academic process, but also a “political” one and therefore subject to influence, Kapp and Ne’eman wrote in a book chapter in 2020. Getting a diagnosis is a critical point in an autistic person’s life, and ASAN wanted to help shape the process.
ASAN, however, was on the outside. The Neurodevelopmental Disorders Work Group’s purview included autism, and the APA appointed its members — all vetted researchers in the space. This did not sit well with Kapp or Ne’eman.
The relationship between ASAN and the work group was “complex,” Kapp and Ne’eman wrote, but it was also “historically significant,” as the two men knew of “no prior example of successful advocacy to refine and improve diagnostic criteria from the community subject to it.” Indeed, Ne’eman is officially listed in the DSM-5 as an adviser to the Neurodevelopmental Disorders Work Group, along with more than a dozen researchers.
The two groups did not see eye to eye on every topic, but they shared an ambitious goal: to fold the diagnoses of Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into the autism spectrum disorder diagnosis.
After some three years of lobbying, ASAN failed to convince the work group to reduce the number of social-communication sub-items needed for autism diagnosis. But it achieved its goal of excluding recovery criteria from the DSM-5, and, most importantly, the definition of autism was united: Gone were Asperger syndrome and PDD-NOS from the landscape.
The work group also added a new condition called social communication disorder (SCD), which some felt was meant to help address fears that the loss of Asperger syndrome and PDD-NOS would create a gap.
But the end result of these changes is that today autism is being used to “describe an incredible range,” Lord says. That in its own right has only led to more confusion — the exact opposite of the intended effect of collapsing autism into one diagnosis.
Questions of diagnosis and identity swirl in the autism community. Some, such as Alison Singer, president of the Autism Science Foundation, suggest a need to return to the days of the more divided spectrum that was in the DSM-IV. Swaths of others say this suggestion is merely “weaponizing” autism’s heterogeneity, as Mary Doherty, founder of Autistic Doctors International and Autistic Med Students, wrote in Spectrum in 2023.
When a draft of the DSM-5 was released in 2010, the removal of Asperger syndrome as a separate diagnosis quickly drew attention from not just academics, but the general public. Members of the work group felt it necessary to explain their decision.
ASAN agreed with this, believing that folding all three conditions into one diagnosis would help eliminate the stigma of an autism diagnosis versus an Asperger diagnosis.
But there was also a sense that something had been lost. Sandra Jones, writing in Spectrum in 2020, said her research found that for many, “Asperger syndrome is more than a diagnosis. It is an identity.”
There was also fear that the diagnosis of autism would become too narrow without Asperger syndrome or PDD-NOS included. In 2012, Volkmar gave a presentation at a meeting in Iceland that used previously collected data to show that many people diagnosed with Asperger syndrome or PDD-NOS would not meet the DSM-5 criteria for autism.
The water around inclusion data is still murky. A meta-analysis from 2019 indicated that the change to the DSM-5 criteria did lead to fewer diagnoses of autism among some who would have been diagnosed with Asperger syndrome, but at the same time, the prevalence of autism in the United States has continued to climb, with experts saying one reason for the increase is better screening and more accurate diagnoses of children.
The DSM-5 offers additional specifiers for autism diagnoses, too, including “with or without accompanying intellectual impairment” and “associated with a known medical or genetic condition or environmental factor.”
But the specifying terms have not been effective, Lord says. “Nobody uses those,” she says. “I mean, it’s just not practical to have long phrases.” In the end, the levels ended up “almost tautological,” Lord says, and should be improved to be more evidence-based.
The ongoing debates have raised hopes in the broader autism community that some issues might be resolved in a DSM-6.
In the decade since the release of the DSM-5, Ne’eman and Kapp have both stepped away from ASAN leadership. Ne’eman, who could not be reached for an interview despite Spectrum’s multiple attempts to contact him, is a doctoral student at Harvard University. Kapp, who is senior lecturer of psychology at the University of Portsmouth in the U.K., declined to be interviewed.
ASAN stands by its position on the DSM-5 from 10 years ago, says Zoe Gross, ASAN’s director of advocacy. “We are still definitely in support of the unified diagnosis, which has eliminated a lot of confusion and clinician-by-clinician variation in the diagnostic process,” Gross says. Of a DSM-6, she says, “we would want to see criteria that reflect autistic people’s experiences, not just outside observations of autistic people.” An example of something that could be included, she says, is more about motor issues. “Autistic people discuss experiencing issues with movement and motor planning beyond what is described in the current criteria, including ‘getting stuck’ or catatonia,” she says.
But it isn’t clear a revision is coming, even 10 years after the previous update.
Michael First, professor of clinical psychiatry at Columbia University, was an editorial and coding consultant for the DSM-5. There were nearly two decades between the publication of the DSM-IV and the DSM-5. When asked if 6 is being considered, First said it’s “an amazingly excellent question.”
After the release of the DSM-5, the APA decided to move to a new model of updating the guide, one that is iterative and more nimble. It’s possible that the APA will consider a DSM-6 if diagnostic criteria need major changes. But for now, suggested changes are submitted online and reviewed by a small committee of experts. If the proposed change is accepted, it is posted for public comment on the APA website. Indeed, in 2022, a formal text revision of the DSM-5 was published, which included small clarity changes to the autism entry. So far, this process is “working pretty well,” First says, and there are “no plans” for a DSM-6, though he says “the door is open.”
Regardless, some, such as Volkmar, think that maybe a book isn’t the way forward anyway. He is pinning his hopes on finding viable biomarkers that have not yet been discovered, though not for lack of trying. For her part, Lord agrees that “we need ways of better acknowledging the very different set of circumstances” of each autistic person, “but I don’t know how that fits into a DSM-6.”
It is distressing to me to learn that the DSM-5 may be final manual to come out. Knowledge is increasing and certain basic assumptions about autism will change. That said it is to soon to do it now, we are in the midst of, if not the beginning of this process.
I was here 10 years ago and at time the concerns that caused a lot of angst was that after years of increased diagnosis the DSM-5 would reverse that process and Aspies would revert to being un and misdiagnosed and thought of as lazy, excuse making attention seekers. The other main concern centered around Aspie identify. Very late diagnosed adults at long last had finally an explanation beyond mental illness and character flaws and a community and now these NT’s were ripping it away.
In the immediate aftermath of the DSM 5 the increase in prevalence slowed and as the last CDC report showed it is increasing rapidly again. There is nothing murky about it the fears about Aspies being reexcluded were unfounded. A key to that was the relatively little noticed clause in the DSM-5 that automatically kept those diagnosed with Asperger diagnosed but under the Autism Spectrum label.
What is murky is the Aspie identity question. From what I have seen while still very much around but it is more of a descriptor and less of an identity these days. Besides other issues in the last 10 years generally people are not getting diagnosed with Aspergers and thus the percentage of Autistics using the Aspergers label for themselves has naturally decreased.
A factor surprisingly not mentioned is the still somewhat controversial revelations of Hans Asperger for who Asperger’s Syndrome is named Nazi complicity. Outside of WP especially on twitter it has become a cancel culture type thing.
While the same fundamental disagreements remain the amount of venom is down. I disagree the DSM 5 was a factor, I think the debate evolved naturally.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“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
Last edited by ASPartOfMe on 04 Jun 2023, 11:48 am, edited 7 times in total.
ASPartOfMe
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04 Jun 2023, 11:41 am
Kaioken wrote:
Yeah, I wish they’d kept Asperger Syndrome as a separate diagnosis. Hopefully they will bring it back.
Personal note:
I was diagnosed in 2013 just as Aspergers was being subsumed. Since we had no idea how this was going to play out my clinician decided to diagnose me with Aspergers Disorder moderate severity under the DSM IV and Autism Spectrum Disorder without a level under the DSM 5. I identified both as an Aspie and as an Autistic person. I was very much against the change. Just as I was finding out these NT f*****s took it away. Bad timing. Besides if the problem was that Aspergers was too broad a subcategory subsuming it to an even broader sub category was the exact wrong way to go. I came to realize that the Aspergers diagnoses was not going to come back because after all that angry debate they were not going to say “oops we made a mistake, sorry about that”.
When the Nazi complicity revelations came out in 2018 any chance of the Aspergers diagnoses coming back disappeared. Because of these revelations I scrapped my Aspie identification.
My wish is that going forward we have more subcategories that are more accurate and more plainly understood.
As far as Aspergers and Aspie I am not canceling those labels, those labels are an important positive part of my history. History it where they lie, they are not my present. Others will feel differently and I have no problem with that.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“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
04 Jun 2023, 12:08 pm
I was diagnosed with Asperger’s when I was 7, so almost 30 years ago. So when they took it away, it was a huge loss of identity as I can’t remember a time when I didn’t have that label. It’s still my go-to label when I’m describing myself to people because it describes me very effectively.
Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.
ASPartOfMe
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04 Jun 2023, 1:12 pm
Kaioken wrote:
I was diagnosed with Asperger’s when I was 7, so almost 30 years ago. So when they took it away, it was a huge loss of identity as I can’t remember a time when I didn’t have that label. It’s still my go-to label when I’m describing myself to people because it describes me very effectively.
Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.
Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.
I am hoping it has to do with the most prominent traits a person has. We will see where the science takes us.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“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
04 Jun 2023, 1:23 pm
The merging was just diagnostic laziness, maybe it made some people very rich in certain fields so that was the reason?.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
05 Jun 2023, 11:58 pm
Kaioken wrote:
I was diagnosed with Asperger’s when I was 7, so almost 30 years ago. So when they took it away, it was a huge loss of identity as I can’t remember a time when I didn’t have that label. It’s still my go-to label when I’m describing myself to people because it describes me very effectively.
Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.
Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.
But by the same token because there were so many labels it was harder to identify people to be evaluated and diagnoses.
I just don't see how you go backwards on this without causing an increase in diagnostic errors. This was a case where they got it right, anybody that qualified under the previous criteria is still included and some who should have been helped, but were outside the line are now included.
Splitting it up would make far more sense with a condition like schizophrenia or ocd where there's more of a natural separation to be had. It's already very expensive to get evaluated in some areas without having to consider a half dozen different possible labels and the possible misdiagnoses that come with that.
06 Jun 2023, 12:03 am
carlos55 wrote:
The merging was just diagnostic laziness, maybe it made some people very rich in certain fields so that was the reason?.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
It wasn't laziness, the previous situation was a number of different diagnoses that overlapped and conflicted with each other and didn't necessarily cover everybody that is now covered. Even after the solutions, it's still often thousands of dollars to get a formal diagnosis and potentially years of waiting. Not to mention having to explain what your specific diagnosis means versus the other ones that might well overlap to a significant degree.
I do realize that some people have an emotional to their diagnosis. I don't personally get it as I've been given and stripped of a number over the years, but this was over all an improvement in terms of getting people accurately diagnosed and connected to help.
06 Jun 2023, 2:01 am
MatchboxVagabond wrote:
carlos55 wrote:
The merging was just diagnostic laziness, maybe it made some people very rich in certain fields so that was the reason?.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
It wasn't laziness, the previous situation was a number of different diagnoses that overlapped and conflicted with each other and didn't necessarily cover everybody that is now covered. Even after the solutions, it's still often thousands of dollars to get a formal diagnosis and potentially years of waiting. Not to mention having to explain what your specific diagnosis means versus the other ones that might well overlap to a significant degree.
I do realize that some people have an emotional to their diagnosis. I don't personally get it as I've been given and stripped of a number over the years, but this was over all an improvement in terms of getting people accurately diagnosed and connected to help.
The biggest difference is in IQ and verbal ability so they could have still separated them on that alone for a start
There will always be reasons for and against but merging in my opinion has caused more problems than it solved.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
06 Jun 2023, 11:07 am
carlos55 wrote:
MatchboxVagabond wrote:
carlos55 wrote:
The merging was just diagnostic laziness, maybe it made some people very rich in certain fields so that was the reason?.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
Its caused a lot of problems they are only now starting to address like the new category of profound autism.
It wasn't laziness, the previous situation was a number of different diagnoses that overlapped and conflicted with each other and didn't necessarily cover everybody that is now covered. Even after the solutions, it's still often thousands of dollars to get a formal diagnosis and potentially years of waiting. Not to mention having to explain what your specific diagnosis means versus the other ones that might well overlap to a significant degree.
I do realize that some people have an emotional to their diagnosis. I don't personally get it as I've been given and stripped of a number over the years, but this was over all an improvement in terms of getting people accurately diagnosed and connected to help.
The biggest difference is in IQ and verbal ability so they could have still separated them on that alone for a start
There will always be reasons for and against but merging in my opinion has caused more problems than it solved.
I definitely agree with that, but I fail to see how that necessitates a different label when a support needs would substantively do the same thing. Also, if you're talking about somebody whose support needs are that significant, IQ is completely meaningless as they aren't going to be attending schools in the same way as the people for whom the tests were originally intended for anyways.
(I'm not an massive fan of IQ testing, even though I usually do well, they're just way too specific to what's being tested to be used the way people use them)
ASPartOfMe
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06 Jun 2023, 11:13 am
There is a difference between creating sub categories and creating a separate diagnosis. Aspergers was a separate diagnosis. Lorna Wing proposed it in a journal article in 1981. Her continuing lobbying for it made a reality by the 90s. What happened was Wing did a prevalence study and found many people who were impaired by Autistic traits but did not meet that era’s diagnostic criteria. She proposed Aspergers as a separate diagnosis as a way of getting kids an Autism diagnosis without calling it Autism. The idea was that parents would be more willing to get their kids assessed for Aspergers rather than Autism with stigmas of ret*d, no feelings, no chance of success in life common back then.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“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
06 Jun 2023, 1:32 pm
ASPartOfMe wrote:
There is a difference between creating sub categories and creating a separate diagnosis. Aspergers was a separate diagnosis. Lorna Wing proposed it in a journal article in 1981. Her continuing lobbying for it made a reality by the 90s. What happened was Wing did a prevalence study and found many people who were impaired by Autistic traits but did not meet that era’s diagnostic criteria. She proposed Aspergers as a separate diagnosis as a way of getting kids an Autism diagnosis without calling it Autism. The idea was that parents would be more willing to get their kids assessed for Aspergers rather than Autism with stigmas of ret*d, no feelings, no chance of success in life common back then.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
Maybe a subcategory would have been better Asperger’s autism just like profound autism.
Instead we have Hollywood actors lumped in with those living in residential care which doesn’t make sense.
I don’t really see the current obsession in diagnosing mild adult cases anyway, those people are likely unable to get welfare can probably work and end up feeling bad about themselves after in many cases, some mentioned on WP.
Those people who feel bad and don’t want to feel bad about having a disorder are driving much of the Orwellian language of extreme ND and make problems for the more disabled
Maybe leaving them alone as just BAP or different without a label would have been better for everyone.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
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06 Jun 2023, 3:52 pm
carlos55 wrote:
ASPartOfMe wrote:
There is a difference between creating sub categories and creating a separate diagnosis. Aspergers was a separate diagnosis. Lorna Wing proposed it in a journal article in 1981. Her continuing lobbying for it made a reality by the 90s. What happened was Wing did a prevalence study and found many people who were impaired by Autistic traits but did not meet that era’s diagnostic criteria. She proposed Aspergers as a separate diagnosis as a way of getting kids an Autism diagnosis without calling it Autism. The idea was that parents would be more willing to get their kids assessed for Aspergers rather than Autism with stigmas of ret*d, no feelings, no chance of success in life common back then.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
Maybe a subcategory would have been better Asperger’s autism just like profound autism.
Instead we have Hollywood actors lumped in with those living in residential care which doesn’t make sense.
I don’t really see the current obsession in diagnosing mild adult cases anyway, those people are likely unable to get welfare can probably work and end up feeling bad about themselves after in many cases, some mentioned on WP.
Those people who feel bad and don’t want to feel bad about having a disorder are driving much of the Orwellian language of extreme ND and make problems for the more disabled
Maybe leaving them alone as just BAP or different without a label would have been better for everyone.
I agree Aspergers should never have been a separate diagnosis. If they called it “level 1 autism” or “Aspergers Autism” the same process of people finding out their kids or themselves fit the broader diagnostic criteria would have happened.
We diagnose mild cases for all types of things. What I don’t understand is why mild Autistics don’t deserve treatments. We don’t say “you are only limping a bit, throw away the cane, tough it out, you don’t have a real disability like those paralyzed from the neck down”.
With 80 percent unemployment rate plenty of mild Aspie type Autistics just can’t go out get a job. But plenty can’t get disability because it is not physical.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“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
08 Jun 2023, 7:35 am
carlos55 wrote:
ASPartOfMe wrote:
There is a difference between creating sub categories and creating a separate diagnosis. Aspergers was a separate diagnosis. Lorna Wing proposed it in a journal article in 1981. Her continuing lobbying for it made a reality by the 90s. What happened was Wing did a prevalence study and found many people who were impaired by Autistic traits but did not meet that era’s diagnostic criteria. She proposed Aspergers as a separate diagnosis as a way of getting kids an Autism diagnosis without calling it Autism. The idea was that parents would be more willing to get their kids assessed for Aspergers rather than Autism with stigmas of ret*d, no feelings, no chance of success in life common back then.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.
Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.
Maybe a subcategory would have been better Asperger’s autism just like profound autism.
Instead we have Hollywood actors lumped in with those living in residential care which doesn’t make sense.
I don’t really see the current obsession in diagnosing mild adult cases anyway, those people are likely unable to get welfare can probably work and end up feeling bad about themselves after in many cases, some mentioned on WP.
Those people who feel bad and don’t want to feel bad about having a disorder are driving much of the Orwellian language of extreme ND and make problems for the more disabled
Maybe leaving them alone as just BAP or different without a label would have been better for everyone.
Because "mild" cases are still pretty extreme and are usually the result of extensive masking. It works out until the stresses of life get to be too much and you pretty much just crash. I was "mild" until I wasn't, and even when I was doing fine, it was a tremendous amount of extra work because I didn't know to stim or how to structure the things that I was doing for my own brain. Or, even that my needs were not being met because I wasn't asking, or even realizing that they weren't being met.
We're still not at a point where there's any sort of systemized effort to identify people who may require some additional help, without having an implosion and losing years of productivity and peace of mind.
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