4 ms·

> Today most of the money and advocacy is for high-performing or moderately-performing people with autism. Is this true? I think it's important to distinguish

> Today most of the money and advocacy is for high-performing or moderately-performing people with autism. Is this true? I think it's important to distinguish between social media (and other sorts of) discourse and where money is actually flowing.

cogman10 1y ago
Not really. The main difference is that we don't immediately institutionalize kids with severe autism, which does save a lot of money. For my kid with severe autism, about the only real impact of more people getting therapy is that sometimes it's harder to get an appointment (triage is more first come first serve and less needs based). Realistically, that simply translates into a month to a half year waiting for an opening.
in_cahoots 1y ago
Social media is not disconnected from society as a whole. Influencers are called that because they have actual influence. You only need to look at and truly understand the MAHA movement to know this. It's not a movement by RFK; it's a movement of people (often moms) who are dissatisfied with their current situation and trying to do something to change it. They may be flat out wrong, but they have influence nonetheless. Did the diagnostic criteria in DSM 5 change as a result of social media, was it the other way around, or was it hidden variables affecting both? Regardless, the money and attention tend to follow what the common people are saying. See: https://pubmed.ncbi.nlm.nih.gov https://pubmed.ncbi.nlm.nih.gov
- anonym29 1y ago
  Topically relevant: the DSM 5 eliminated the distinction between what was formerly called an Asperger's Syndrome diagnosis from an Autism diagnosis, in part because the name "Asperger" came from a Nazi scientist, and therefore, per then-current political winds, the only morally correct action to take was to erase the name. Of course, this motive needed some kind of non-political justification to not come across as what it was (an example of non-medical political partisanship aimed at erasing history that was disfavored by the political partisans pushing the agenda), which is where the idea of re-categorizing what were and still are clearly at least two distinct clusters of diagnostic patterns as one grand, unified "autism spectrum" that functionally resulted in little more than muddying of waters in the field, which now need to be cleared up again - as pointed out by TFA. You're right that there are external variables, including non-medical variables, influencing the DSM-5's diagnostic shuffle, I just don't see them as particularly well "hidden".
  - cogman10 1y ago
    No. Asperger's was eliminated as a diagnosis because differentiating it from autism was hard to do. Two different evaluations could land a kid as either autistic or asperger's depending on the day and the evaluator. And, importantly, Asperger's qualified for less therapies and treatment than autism did. That meant that even though your kid likely needed more treatment, they'd be denied it because they had a good day when being evaluated. The crossover for treatment was largely the same with autism qualifying for more. Even if it was the "Nazi link" they'd simply have changed the name to something more acceptable. TFA is suggesting that there are probably multiple conditions which cluster around similar symptoms which makes it hard to identify the exact cause of autism.
    - anonym29 1y ago
      The diagnostic reliability criteria even back then painted a picture of the details of the condition space being more nuanced than what were currently being captured, not less nuanced, so the idea of reducing nuance and distinction still seems questionable by an empirical and epistemological standpoint. However, that decision remains defensible and supported by the social justice / equity / de-hierarchicalization / eponym erasure motivational drives. These, besides the eponym erasure specifically, also explain many of the other changes in the DSM-5, like the elimination of many other more-detailed diagnoses, like PDD-NOS. This isn't to assert that the clinical reasoning offered didn't have merit, just that institutional consensus-forming behavior isn't immune to the macro backdrop of the sociopolitical winds of the day. Committee member A thinks: "These diagnostic categories aren't reliable" (true, clinical concern) Committee member B thinks: "Honoring Asperger is ethically uncomfortable" (true, historical concern) Committee member C thinks: "Hierarchical categories are problematic" (true, equity concern) Committee member D thinks: "Spectrum model reflects current research better" (true, scientific concern) No single person needs a "primary political motivation." No conspiracy needed. No explicit coordination required. Yet the outcome eliminating Asperger's and collapsing categories - emerges from a system where: - Progressive ideology shapes what problems become salient - Shared epistemic frameworks determine what solutions seem natural - Professional incentives reward what can be publicly justified - Social proof operates through "everyone reasonable agrees" "The clinical rationale was legitimate" doesn't contradict "political ideology shaped the outcome."
- deleted 1y ago
  [deleted]
- MangoToupe 1y ago
  I don't disagree with this at all; but I do question if there's been a lot of research for what kind of resources even help "high-performing or moderately-performing people", let alone directing these resources to this demographic over autistic people who struggle to meet society's expectations for individual productivity. "Advocacy" I could see more clearly, and I question how much of this "advocacy" is actually doing for "high-performing or moderately-performing" people. IMO, the only way to really "resolve" the anxiety over prioritizing one group over another in either discourse or in resources in the long term is finding a way to integrate non-productive people into the daily lives of productive people. This seems difficult to imagine in today's America, where community is largely based around interests and careers that will self-select these people away.

cogman10 1y ago

Not really. The main difference is that we don't immediately institutionalize kids with severe autism, which does save a lot of money. For my kid with severe autism, about the only real impact of more people getting therapy is that sometimes it's harder to get an appointment (triage is more first come first serve and less needs based). Realistically, that simply translates into a month to a half year waiting for an opening.

in_cahoots 1y ago

Social media is not disconnected from society as a whole. Influencers are called that because they have actual influence. You only need to look at and truly understand the MAHA movement to know this. It's not a movement by RFK; it's a movement of people (often moms) who are dissatisfied with their current situation and trying to do something to change it. They may be flat out wrong, but they have influence nonetheless. Did the diagnostic criteria in DSM 5 change as a result of social media, was it the other way around, or was it hidden variables affecting both? Regardless, the money and attention tend to follow what the common people are saying. See: https://pubmed.ncbi.nlm.nih.gov https://pubmed.ncbi.nlm.nih.gov

anonym29 1y ago
Topically relevant: the DSM 5 eliminated the distinction between what was formerly called an Asperger's Syndrome diagnosis from an Autism diagnosis, in part because the name "Asperger" came from a Nazi scientist, and therefore, per then-current political winds, the only morally correct action to take was to erase the name. Of course, this motive needed some kind of non-political justification to not come across as what it was (an example of non-medical political partisanship aimed at erasing history that was disfavored by the political partisans pushing the agenda), which is where the idea of re-categorizing what were and still are clearly at least two distinct clusters of diagnostic patterns as one grand, unified "autism spectrum" that functionally resulted in little more than muddying of waters in the field, which now need to be cleared up again - as pointed out by TFA. You're right that there are external variables, including non-medical variables, influencing the DSM-5's diagnostic shuffle, I just don't see them as particularly well "hidden".
- cogman10 1y ago
  No. Asperger's was eliminated as a diagnosis because differentiating it from autism was hard to do. Two different evaluations could land a kid as either autistic or asperger's depending on the day and the evaluator. And, importantly, Asperger's qualified for less therapies and treatment than autism did. That meant that even though your kid likely needed more treatment, they'd be denied it because they had a good day when being evaluated. The crossover for treatment was largely the same with autism qualifying for more. Even if it was the "Nazi link" they'd simply have changed the name to something more acceptable. TFA is suggesting that there are probably multiple conditions which cluster around similar symptoms which makes it hard to identify the exact cause of autism.
  - anonym29 1y ago
    The diagnostic reliability criteria even back then painted a picture of the details of the condition space being more nuanced than what were currently being captured, not less nuanced, so the idea of reducing nuance and distinction still seems questionable by an empirical and epistemological standpoint. However, that decision remains defensible and supported by the social justice / equity / de-hierarchicalization / eponym erasure motivational drives. These, besides the eponym erasure specifically, also explain many of the other changes in the DSM-5, like the elimination of many other more-detailed diagnoses, like PDD-NOS. This isn't to assert that the clinical reasoning offered didn't have merit, just that institutional consensus-forming behavior isn't immune to the macro backdrop of the sociopolitical winds of the day. Committee member A thinks: "These diagnostic categories aren't reliable" (true, clinical concern) Committee member B thinks: "Honoring Asperger is ethically uncomfortable" (true, historical concern) Committee member C thinks: "Hierarchical categories are problematic" (true, equity concern) Committee member D thinks: "Spectrum model reflects current research better" (true, scientific concern) No single person needs a "primary political motivation." No conspiracy needed. No explicit coordination required. Yet the outcome eliminating Asperger's and collapsing categories - emerges from a system where: - Progressive ideology shapes what problems become salient - Shared epistemic frameworks determine what solutions seem natural - Professional incentives reward what can be publicly justified - Social proof operates through "everyone reasonable agrees" "The clinical rationale was legitimate" doesn't contradict "political ideology shaped the outcome."
deleted 1y ago
[deleted]
MangoToupe 1y ago
I don't disagree with this at all; but I do question if there's been a lot of research for what kind of resources even help "high-performing or moderately-performing people", let alone directing these resources to this demographic over autistic people who struggle to meet society's expectations for individual productivity. "Advocacy" I could see more clearly, and I question how much of this "advocacy" is actually doing for "high-performing or moderately-performing" people. IMO, the only way to really "resolve" the anxiety over prioritizing one group over another in either discourse or in resources in the long term is finding a way to integrate non-productive people into the daily lives of productive people. This seems difficult to imagine in today's America, where community is largely based around interests and careers that will self-select these people away.