5 ms·

IMO the reclassification of Asperger’s Syndrome as a general Autism Spectrum disorder was massively unhelpful to all, and it only served to muddy conversations

by jckahn 4y ago

IMO the reclassification of Asperger’s Syndrome as a general Autism Spectrum disorder was massively unhelpful to all, and it only served to muddy conversations like this. Different ends of the spectrum affect people in wildly different ways. Different extremes need very different types of support. As a person with Asperger’s, I really wish it remained a distinct condition in terms of its classification.

djaychela 4y ago
Had this exact conversation with my 18-year-old daugther yesterday. She's fairly recently diagnosed and was happy with being described as Asperger's, but now it's much less clear when she's described as Autistic.
- adolph 4y ago
  Hey, at least there is the pat on the head phrase of “high functioning” right?
  - Loughla 4y ago
    I mean, I absolutely understand not wanting to use that, but what do I say instead? Autism is a spectrum, and some folks are less able to function than others on that spectrum. I legitimately want to know, because I don't know what to say here.
    - mrguyorama 4y ago
      The reality is that Autism as a whole IS NOT one single spectrum. It's a lot of different symptoms, needs, quirks, and crossover with a bunch of other mental illnesses as well, like social anxiety. Describing it as a singular variable "Spectrum" produces entirely wrong conclusions. It's more like a 10 dimensional space, at least, with each dimension being a symptom or needs category. For example, I don't think anyone would diagnose me with autism, or even old asbergers, but I have a lot of sensory issues and struggle to parse speech and faces. If you are aware of someone having some form of autism, and you want to know more about "where on the spectrum" they are, simply talk to them, ask what they struggle with, ask about their needs. If you didn't have to talk to a family member or nurse before talking to them, they probably don't need huge affordances.
      - cwillu 4y ago
        Literally what a spectrum is: a bunch of related-but-different things. Light is a spectrum. The frequencies composing a sound are a spectrum. A volume control is _not_ a spectrum.
    - sctb 4y ago
      I've heard "low support needs" vs. "high support needs" suggested, which is similar to the language used in the DSM severity levels.
      - djaychela 4y ago
        The problem one daughter of mine had with that was because she is high-functioning, she says that poeple think she consequently needs no support. She's demonstrated conclusively that isn't the case, and both of my diagnosed step-daughters need a lot of support, much in areas where many people don't.
- recuter 4y ago
  Just calmly explain that weaponized autism makes the world go around. She is on the superpowers end of the spectrum and the normals are right to be afraid of their superiors. .. :)
  - djaychela 4y ago
    I wish that was the case. Both daughters have diagnoses, and both have had very difficult adolescent years. Next-level stuff that I think people don't believe me about most of the time. They have great difficulty with socialising, and that has been extremely difficult for them. Both of them rather resent the 'rain man' view of autism that they have some special talent as a payoff for their difficulties, although one is incredible in terms of research and planning. But she doesn't see that as being anything to do with autism!
    - msrenee 4y ago
      Do you think they might be inspired by the Temple Grandin lens of autism? She's accomplished so much in a field that basically didn't exist before her and against a massive amount of adversity. She's a time-worn example of how the different perspectives that autism can give you can be leveraged into a calling that is both lucrative and improves lives.
    - recuter 4y ago
      > But she doesn't see that as being anything to do with autism! Don't forget that she is also a teenager. Growing up is hard, socializing and fitting in can feel incredibly important -- but there's always an alternative cost: less time mucking about with mean girl types, more time to study the sword. This is a blessing in disguise. The payoff will come, for that reason alone, and so will the true friends down the line. She probably wouldn't choose this now, but later on she absolutely would.
  - Der_Einzige 4y ago
    Glad to mentioned "Weaponized autism" because the original justification for Hans asperger not being forced to murder the aspie kids was their potential for those kids to develop military technology for the Reich. Remember aspies, the world believes you are only valuable due to your ability to produce, and specifically, to produce novel things. Ultimately, for this reason, I'd love to see a "cure" for autism as it is a debilitating disease for many of those who suffer with it
DaiPlusPlus 4y ago
The diagnostic distinction between Asperger’s and HFA was arbitrary and depending on the diagnosis one received as a child would lead to vastly different outcomes (i.e. it meant the difference between staying in a normal school, with academic support, and hopefully getting to go to university versus losing academic options due to being railroaded into a special-school with less course options and so never getting into HE at all - all on the basis of a single childhood assessment). If the worse that comes out of the DSM-V’s reconceptualisation of autism is just muddied conversations then I’ll gladly take that over the old system where highly-capable people were being denied opportunities like going to uni. Also, Asperger was a child-killing Nazi (yes, literally). I’m glad we don’t use his name anymore.
- mrangle 4y ago
  It isn't arbitrary. Asperger's and HFA are not the same. One is language impaired and one isn't, as the bare minimum clinical difference. That being said, I don't doubt that the history of differential diagnosis is marked with widespread incompetence. And I obviously agree that being denied opportunity based on either diagnosis is a social crime. But what you mention is not the worst outcome of the DSM-V reclassification. What they are now moving toward / doing is still classifying HFA people as Type 1 autistic. But for (former) asperger's patients they are tending to do is diagnose a social skills disorder instead. Essentially removing anyone without a language impairment, at minimum, from the autism funded-services pool. Ignoring the arguable utility of services for HFA or Asperger's clients for one second, beyond the psychological and developmental benefits of simple social interaction. What this also does is remove a population from the autism category that, to all but the patient and clinical professionals themselves, are often only detectable as different due to factors centered on how (often more capable) intelligence is cognitively distributed and manifests. Ignoring comorbidities. Aside from affecting the important identity issue for the patient: essentially what they did was to remove any intelligence difference from being able to be a primary clinical marker for autism. Or sometimes the only obvious marker, depending on the individual's masking skill and ability to handle fatigue from it.
cjonas 4y ago
My wife is a BCBA and she spends all her time teaching kids on the "low" end of the spectrum critical life and safety skill (potty training, using a fork, how to ask for help)... While there's a growing group of people on the other end who say what she does is cruel and evil (many of them did receive bad/unnecessary therapy unfortunately)
- jckahn 4y ago
  > there's a growing group of people on the other end who say what she does is cruel and evil Why do they say this?
  - faeriechangling 4y ago
    BCBAs are paid by parents and schools. ABA is considered “Autism therapy” although there’s no particular reason it could be. The techniques used in such therapy bear a striking resemblance to conversion therapy, especially when the goal is to make the child behave normatively in some way, let’s say by not fidgeting. Much of the most cited evidence for ABA being effective like it raising IQ was gathered in the 80s, when autism I was diagnosed over a hundred times less often, with it becoming insurable in the 90s. There are also some hilariously dark moments in ABA’s history and even it’s present. The judge rotenberg center, still open, being the most infamous where they strap down kids and shock them with electric vests (aversives in ABA speak, a rare practice) while strapped down. People prominent in ABA’s history like Ile Ovar Lovaas were pioneers in transgender conversion therapy and they used the EXACT same techniques they used on the autistics. He also published an article about slapping children. They overwhelmingly work with autistics (mostly because of insurance) who were instrumental in conversion therapy in the past. From my experiences reading their communities, forcing autistics to act more normal is still a common goal. They work largely for companies who hire a few BCBAs and they’re structurally under pressure to produce results as measured by parents or children. Even today it’s common for ABAs to be assigned to torture autisitc children by subjecting them too heavily unpleasant experiences over not maintaining eye contract or stimming which are pretty transparently against their interests and only suit the aesthetic preferences of the adults around them. The former patients in my experience give a mixed reaction to ABA (from “it let me fit in and live a normal life” to “I liked them they weee fun and funny” to “meh” to “fuckers tortured me” to “why did they have such a fucking problem with me flapping my hands?”) but their opinions broadly speaking don’t matter in any real way because they don’t sign the checks. Mind you, people with autism are overrepresented among BCBAs. Since autism diagnosis doubles every few years and is diagnosed in more and more marginal cases amongst people who are more and more lucid and articulate, who much more arguably never needed by therapy at all, the political correctness of what is in practice benevolent brainwashing of autistics is declining sharply. Were ABA only practiced on 80s autistics (autistics with high support needs, low functioning autistics) nobody would care so to be honest BCBAs reputation got screwed over by the broadening conceptualization of what autism means. Hope that answer wasn’t too short.
helf 4y ago
Almost every person I have met who whines about Asperger’s no longer being a valid diagnosis seem to be but hurt because, for awhile, Asperger’s = “omg super genius” in the popular mind. Get over it. He was literally a nazi. It wasn’t even a great descriptor for a wide range of traits. I would normally have been diagnosed with it. Now I’m just “Autistic” with ADHD and low support needs. Clinging to the verbiage is like all the dipshits in my home state listing MLK day as “MLK Day/Genera Lee’s Birthday”. It serves no purpose and just makes people roll their eyes and tune you out.
- cat_plus_plus 4y ago
  So, since Hitler promoted women's sports, we should just stop that? Identity of researchers is irrelevant, the question is whether end result is useful. Obviously only applies to past research, present day we should follow best practices of modern medical ethics. Nevertheless it's clear that even if Aspergers is strictly "low end of autism", those affected are often highly productive in society without any special accomodation and may on the other hand need support in emotional and social adjustment which would be beyond reach with severe autism. For example, Elon Musk needs some help with emotional intelligence, not vocational training. I have also seen no evidence that Asperger's and Autism are in fact forms of the same condition. Forgetfulness is not dementia, chubbiness is not obesity. Don't leap to conclusions just because you don't like the guy.
- red-iron-pine 4y ago
  > Clinging to the verbiage is like all the dipshits in my home state listing MLK day as “MLK Day/Genera Lee’s Birthday”. It serves no purpose and just makes people roll their eyes and tune you out. You must be from VA, or another southern state... It absolutely serves a purpose, and it's sending a signal to a very specific (maybe 2 very specific) groups of people.
  - mrguyorama 4y ago
    Just like all the confederate monuments that weren't built until like the 50's, it's intentional.
Der_Einzige 4y ago
Giving people who have a syndrome which causes poor social skills and frequently leaves it's victims bullied the name "assburgers" syndrome was about as unfortunate as it got for these people. As someone who had a diagnosis for Asperger's, I'm extremely happy to see the name changed.
- mrguyorama 4y ago
  Also, the theory of taking autism as a single-variate "how functioning are you" spectrum and labeling the low side of that spectrum "Asbergers" was unscientific nonsense anyway, not backed up by research into autism. There are a multitude of spectrums of symptoms, support needs, issues, and attributes that are all lumped together. The idea of taking that huge parameter space and mapping it to only two classes was nonsense. There is an important shift in psychology to move beyond really dumb and old classifications into actual evidence based treatment.

by jckahn 4y ago

djaychela 4y ago

Had this exact conversation with my 18-year-old daugther yesterday. She's fairly recently diagnosed and was happy with being described as Asperger's, but now it's much less clear when she's described as Autistic.

adolph 4y ago
Hey, at least there is the pat on the head phrase of “high functioning” right?
- Loughla 4y ago
  I mean, I absolutely understand not wanting to use that, but what do I say instead? Autism is a spectrum, and some folks are less able to function than others on that spectrum. I legitimately want to know, because I don't know what to say here.
  - mrguyorama 4y ago
    The reality is that Autism as a whole IS NOT one single spectrum. It's a lot of different symptoms, needs, quirks, and crossover with a bunch of other mental illnesses as well, like social anxiety. Describing it as a singular variable "Spectrum" produces entirely wrong conclusions. It's more like a 10 dimensional space, at least, with each dimension being a symptom or needs category. For example, I don't think anyone would diagnose me with autism, or even old asbergers, but I have a lot of sensory issues and struggle to parse speech and faces. If you are aware of someone having some form of autism, and you want to know more about "where on the spectrum" they are, simply talk to them, ask what they struggle with, ask about their needs. If you didn't have to talk to a family member or nurse before talking to them, they probably don't need huge affordances.
    - cwillu 4y ago
      Literally what a spectrum is: a bunch of related-but-different things. Light is a spectrum. The frequencies composing a sound are a spectrum. A volume control is _not_ a spectrum.
  - sctb 4y ago
    I've heard "low support needs" vs. "high support needs" suggested, which is similar to the language used in the DSM severity levels.
    - djaychela 4y ago
      The problem one daughter of mine had with that was because she is high-functioning, she says that poeple think she consequently needs no support. She's demonstrated conclusively that isn't the case, and both of my diagnosed step-daughters need a lot of support, much in areas where many people don't.
recuter 4y ago
Just calmly explain that weaponized autism makes the world go around. She is on the superpowers end of the spectrum and the normals are right to be afraid of their superiors. .. :)
- djaychela 4y ago
  I wish that was the case. Both daughters have diagnoses, and both have had very difficult adolescent years. Next-level stuff that I think people don't believe me about most of the time. They have great difficulty with socialising, and that has been extremely difficult for them. Both of them rather resent the 'rain man' view of autism that they have some special talent as a payoff for their difficulties, although one is incredible in terms of research and planning. But she doesn't see that as being anything to do with autism!
  - msrenee 4y ago
    Do you think they might be inspired by the Temple Grandin lens of autism? She's accomplished so much in a field that basically didn't exist before her and against a massive amount of adversity. She's a time-worn example of how the different perspectives that autism can give you can be leveraged into a calling that is both lucrative and improves lives.
  - recuter 4y ago
    > But she doesn't see that as being anything to do with autism! Don't forget that she is also a teenager. Growing up is hard, socializing and fitting in can feel incredibly important -- but there's always an alternative cost: less time mucking about with mean girl types, more time to study the sword. This is a blessing in disguise. The payoff will come, for that reason alone, and so will the true friends down the line. She probably wouldn't choose this now, but later on she absolutely would.
- Der_Einzige 4y ago
  Glad to mentioned "Weaponized autism" because the original justification for Hans asperger not being forced to murder the aspie kids was their potential for those kids to develop military technology for the Reich. Remember aspies, the world believes you are only valuable due to your ability to produce, and specifically, to produce novel things. Ultimately, for this reason, I'd love to see a "cure" for autism as it is a debilitating disease for many of those who suffer with it

DaiPlusPlus 4y ago

The diagnostic distinction between Asperger’s and HFA was arbitrary and depending on the diagnosis one received as a child would lead to vastly different outcomes (i.e. it meant the difference between staying in a normal school, with academic support, and hopefully getting to go to university versus losing academic options due to being railroaded into a special-school with less course options and so never getting into HE at all - all on the basis of a single childhood assessment). If the worse that comes out of the DSM-V’s reconceptualisation of autism is just muddied conversations then I’ll gladly take that over the old system where highly-capable people were being denied opportunities like going to uni. Also, Asperger was a child-killing Nazi (yes, literally). I’m glad we don’t use his name anymore.

mrangle 4y ago
It isn't arbitrary. Asperger's and HFA are not the same. One is language impaired and one isn't, as the bare minimum clinical difference. That being said, I don't doubt that the history of differential diagnosis is marked with widespread incompetence. And I obviously agree that being denied opportunity based on either diagnosis is a social crime. But what you mention is not the worst outcome of the DSM-V reclassification. What they are now moving toward / doing is still classifying HFA people as Type 1 autistic. But for (former) asperger's patients they are tending to do is diagnose a social skills disorder instead. Essentially removing anyone without a language impairment, at minimum, from the autism funded-services pool. Ignoring the arguable utility of services for HFA or Asperger's clients for one second, beyond the psychological and developmental benefits of simple social interaction. What this also does is remove a population from the autism category that, to all but the patient and clinical professionals themselves, are often only detectable as different due to factors centered on how (often more capable) intelligence is cognitively distributed and manifests. Ignoring comorbidities. Aside from affecting the important identity issue for the patient: essentially what they did was to remove any intelligence difference from being able to be a primary clinical marker for autism. Or sometimes the only obvious marker, depending on the individual's masking skill and ability to handle fatigue from it.

cjonas 4y ago

My wife is a BCBA and she spends all her time teaching kids on the "low" end of the spectrum critical life and safety skill (potty training, using a fork, how to ask for help)... While there's a growing group of people on the other end who say what she does is cruel and evil (many of them did receive bad/unnecessary therapy unfortunately)

jckahn 4y ago
> there's a growing group of people on the other end who say what she does is cruel and evil Why do they say this?
- faeriechangling 4y ago
  BCBAs are paid by parents and schools. ABA is considered “Autism therapy” although there’s no particular reason it could be. The techniques used in such therapy bear a striking resemblance to conversion therapy, especially when the goal is to make the child behave normatively in some way, let’s say by not fidgeting. Much of the most cited evidence for ABA being effective like it raising IQ was gathered in the 80s, when autism I was diagnosed over a hundred times less often, with it becoming insurable in the 90s. There are also some hilariously dark moments in ABA’s history and even it’s present. The judge rotenberg center, still open, being the most infamous where they strap down kids and shock them with electric vests (aversives in ABA speak, a rare practice) while strapped down. People prominent in ABA’s history like Ile Ovar Lovaas were pioneers in transgender conversion therapy and they used the EXACT same techniques they used on the autistics. He also published an article about slapping children. They overwhelmingly work with autistics (mostly because of insurance) who were instrumental in conversion therapy in the past. From my experiences reading their communities, forcing autistics to act more normal is still a common goal. They work largely for companies who hire a few BCBAs and they’re structurally under pressure to produce results as measured by parents or children. Even today it’s common for ABAs to be assigned to torture autisitc children by subjecting them too heavily unpleasant experiences over not maintaining eye contract or stimming which are pretty transparently against their interests and only suit the aesthetic preferences of the adults around them. The former patients in my experience give a mixed reaction to ABA (from “it let me fit in and live a normal life” to “I liked them they weee fun and funny” to “meh” to “fuckers tortured me” to “why did they have such a fucking problem with me flapping my hands?”) but their opinions broadly speaking don’t matter in any real way because they don’t sign the checks. Mind you, people with autism are overrepresented among BCBAs. Since autism diagnosis doubles every few years and is diagnosed in more and more marginal cases amongst people who are more and more lucid and articulate, who much more arguably never needed by therapy at all, the political correctness of what is in practice benevolent brainwashing of autistics is declining sharply. Were ABA only practiced on 80s autistics (autistics with high support needs, low functioning autistics) nobody would care so to be honest BCBAs reputation got screwed over by the broadening conceptualization of what autism means. Hope that answer wasn’t too short.

helf 4y ago

Almost every person I have met who whines about Asperger’s no longer being a valid diagnosis seem to be but hurt because, for awhile, Asperger’s = “omg super genius” in the popular mind. Get over it. He was literally a nazi. It wasn’t even a great descriptor for a wide range of traits. I would normally have been diagnosed with it. Now I’m just “Autistic” with ADHD and low support needs. Clinging to the verbiage is like all the dipshits in my home state listing MLK day as “MLK Day/Genera Lee’s Birthday”. It serves no purpose and just makes people roll their eyes and tune you out.

cat_plus_plus 4y ago
So, since Hitler promoted women's sports, we should just stop that? Identity of researchers is irrelevant, the question is whether end result is useful. Obviously only applies to past research, present day we should follow best practices of modern medical ethics. Nevertheless it's clear that even if Aspergers is strictly "low end of autism", those affected are often highly productive in society without any special accomodation and may on the other hand need support in emotional and social adjustment which would be beyond reach with severe autism. For example, Elon Musk needs some help with emotional intelligence, not vocational training. I have also seen no evidence that Asperger's and Autism are in fact forms of the same condition. Forgetfulness is not dementia, chubbiness is not obesity. Don't leap to conclusions just because you don't like the guy.
red-iron-pine 4y ago
> Clinging to the verbiage is like all the dipshits in my home state listing MLK day as “MLK Day/Genera Lee’s Birthday”. It serves no purpose and just makes people roll their eyes and tune you out. You must be from VA, or another southern state... It absolutely serves a purpose, and it's sending a signal to a very specific (maybe 2 very specific) groups of people.
- mrguyorama 4y ago
  Just like all the confederate monuments that weren't built until like the 50's, it's intentional.

Der_Einzige 4y ago

Giving people who have a syndrome which causes poor social skills and frequently leaves it's victims bullied the name "assburgers" syndrome was about as unfortunate as it got for these people. As someone who had a diagnosis for Asperger's, I'm extremely happy to see the name changed.

mrguyorama 4y ago
Also, the theory of taking autism as a single-variate "how functioning are you" spectrum and labeling the low side of that spectrum "Asbergers" was unscientific nonsense anyway, not backed up by research into autism. There are a multitude of spectrums of symptoms, support needs, issues, and attributes that are all lumped together. The idea of taking that huge parameter space and mapping it to only two classes was nonsense. There is an important shift in psychology to move beyond really dumb and old classifications into actual evidence based treatment.