6 ms·

As someone with a close family member who is autistic, I am always bothered by the phrase "if you have met one person with autism, you have met one person with

As someone with a close family member who is autistic, I am always bothered by the phrase "if you have met one person with autism, you have met one person with autism". Autism as a diagnostic classification is so broad that the non verbal are lumped in with those with rigidity behavior, when at least to me they seem like they should just have a different diagnosis. This is not just playing semantics if they're able to correlate against specific sets of genes. This work seems highly relevant, IMO

Jensson 2y ago
Merging autism with asperger went the exact opposite direction of where it needed to.
- SpicyLemonZest 2y ago
  The reasons why the change was made (https://www.thetransmitter.org/spectrum/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5 https://www.thetransmitter.org/spectrum/why-fold-asperger-sy...) still make sense to me. The autism spectrum is quite wide, and I'd 100% believe something meaningful coming from the source study, but the specific category of Asperger's was based on factors that don't seem to matter much and weren't being reliably evaluated.
- NeuroCoder 2y ago
  The problem was that a diagnosis of Asperger's was unreliable and therefore useless. We definitely need to identify individuals within the diagnosis of autism spectrum disorder that can reliably be identified and benefit from specific interventions. However, Asperger's did not provide that.
  - throwawaymaths 2y ago
    The problem was that asperger was a problematic physician at best.
    - deleted 2y ago
      [deleted]
    - deleted 2y ago
      [deleted]
  - TeaBrain 2y ago
    I'd argue that having the descriptor of "asperger's" is much more useful than simply having a blanket descriptor of "autism". Low functioning people who are described as having autism, have very little in common with most of the high functioning type.
    - seba_dos1 2y ago
      > have very little in common [citation needed]
      - TeaBrain 2y ago
        Do you really need a citation that a non-verbal, uncommunicative and non-independent "non-functional" traditional autism case is different from what would often be referred to as "Asperger's", which is common amongst software developers? Or take people like Elon Musk, Bill Gross and David Byrne, who all claim to have Asperger's, Bill and David having been formally diagnosed. These people, who achieved great success, and went through most of their lives without needing a diagnosis, are clearly nothing like the non-functional patients with clearer traditional cases of autism.
        seba_dos1 2y ago
        First you claimed that they "have very little in common", and now merely that it "is different"... although in the next sentence you go back to "clearly nothing like"?? You seem quite undecided about what you actually want to say. They're obviously "different", but there's plenty of reasons to believe that they have a lot in common, so going against established science should require some citations.
  - faeriechangling 2y ago
    No, the problem was that psychiatrists could bill insurers more to treat autism than they could Asperger's. You aren't cynical enough. If it wasn't a scientific distinction, why are we still identifying autism subtypes?
    - didufis 2y ago
      I think this is precisely why for-profit healthcare is wild. If it weren’t for ideology we could get behind socialised care and cut out all of the nonsense.
    - TeaBrain 2y ago
      Do you have any information on patients could be billed more for an autism diagnosis? I've never heard this claim before.
      - faeriechangling 2y ago
        Mostly anecdotal, my school psychologist back in the day sure believed it, and this would vary from place to place. She was a champion of "You give children the diagnosis that gives them the services they need". Autism being the one which gave children the services they needed, and she often expressed frustration at not being able to get such a diagnosis. In general Aspergers basically meant no verbal delays, where Autism meant verbal delay. Autism was also around longer as a diagnosis. In general, I think theres a reason they changed the name of Aspergers to Autism and not the other way around.
        spondylosaurus 2y ago
        I thought they changed the name in part because Hans Asperger was a Nazi collaborator.
        TeaBrain 2y ago
        Interesting that the diagnosis of autism apparently wasn't available to her. Do you know what she would have been referring to by the autism diagnosis being able to get children the services they needed, that the "asperger's" diagnosis would not?
  - TeaBrain 2y ago
    >diagnosis of Asperger's was unreliable and therefore useless If this is true, then in what way is the diagnosis of autism reliable, that the Asperger's label was not?
    - NeuroCoder 2y ago
      Asperger's was not reliably diagnosable between healthcare workers trained to diagnose it. In other words, a diagnosis of Asperger's in someone's medical chart was not a reliable way of knowing if they had Asperger's.
      - TeaBrain 2y ago
        This isn't really providing any clarity to the question, since you're simply restating your previous claim. How is a diagnosis of autism any more reliable?
        NeuroCoder 2y ago
        As in it has a higher inter rater reliability. The statistical term of reliability that is used when describing the likelihood to reproduce a measure under similar conditions.
        TeaBrain 2y ago
        What matters here is not the general inter-rater reliability for all autism diagnoses, but only those for the patients which would have otherwise been described as having Asperger's, which can often present as a very mild disorder. Given that many Asperger's cases are mild, it is no surprise that there is low inter-rater reliability. Is there evidence that for this type of individual, there is a higher inter-rater reliability with the diagnosis of "autism"?
- CalRobert 2y ago
  It almost feels like a cynical ploy to nerf autism so insurance companies don't have to pay for anything. There's a huge, huge, difference between "I'm awkward" and "my kid cannot talk".
jtsiskin 2y ago
The expression you quoted is completely agreeing with you! It’s a play on the expected idiomatic ending “then you have met everyone with autism”, pointing out that the diagnosis is broad and everyone is different
- greesil 2y ago
  Why even have the word autism? It's almost meaningless.
  - Spivak 2y ago
    "hot" is still a meaningful word even though 100 F°, 1000 F°, and 1,000,000 F° aren't comparable at all. They're nonetheless still all experiencing heat.
    - blargey 2y ago
      Yes, if we could pin it to a linear scale of Degrees Autistic (Farenheit), that could be estimated with reasonable precision for all day-to-day relevant values by feeling the nearby air on your skin, nobody would complain about "Austism" being too broad.
      - Spivak 2y ago
        Am I missing something you can though. That's actually kinda how it is. I detest the phrase "high functioning" but that group is roughly your outside temperatures. You'll notice the difference between 30° and 80° and the same temperature 72° can feel different in the summer, winter, before it rains, when it's humid/dry but is still the same intensity. Then there's 1000° degrees where (and this is someone I know) he stripped naked, ran through downtown, and yelled at random restaurant workers calling them fascists for not lettting him in and then got into a fight with the cops. I think broadly that's what the "spectrum" characterization is meant to convey. And you should expect this, in code there's one happy path and a million different ways to err, some more catastrophic than others.
      - 2y ago
saghm 2y ago
> Autism as a diagnostic classification is so broad that the non verbal are lumped in with those with rigidity behavior, when at least to me they seem like they should just have a different diagnosis. As someone with a diagnosis, I've gotten into the habit of referring to myself as "on the spectrum" when discussing with people rather than using a specific term. It helps emphasize the fact that there's a range of potential manifestations, and (hopefully) helps remind people that their expectations based on past experience might not fit my behavior exactly.
kelseyfrog 2y ago
To me the point of the phrase was to counter prejudice and gatekeeping. "You can't be autistic because I know another autistic person who does the opposite," is a sentiment that autistic people in my life have encountered. It doesn't extend to researchers because (arguably) researchers aren't in the business of telling people that because they are uncomfortable with behaviors associated with autism.

Jensson 2y ago

Merging autism with asperger went the exact opposite direction of where it needed to.

SpicyLemonZest 2y ago
The reasons why the change was made (https://www.thetransmitter.org/spectrum/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5 https://www.thetransmitter.org/spectrum/why-fold-asperger-sy...) still make sense to me. The autism spectrum is quite wide, and I'd 100% believe something meaningful coming from the source study, but the specific category of Asperger's was based on factors that don't seem to matter much and weren't being reliably evaluated.
NeuroCoder 2y ago
The problem was that a diagnosis of Asperger's was unreliable and therefore useless. We definitely need to identify individuals within the diagnosis of autism spectrum disorder that can reliably be identified and benefit from specific interventions. However, Asperger's did not provide that.
- throwawaymaths 2y ago
  The problem was that asperger was a problematic physician at best.
  - deleted 2y ago
    [deleted]
  - deleted 2y ago
    [deleted]
- TeaBrain 2y ago
  I'd argue that having the descriptor of "asperger's" is much more useful than simply having a blanket descriptor of "autism". Low functioning people who are described as having autism, have very little in common with most of the high functioning type.
  - seba_dos1 2y ago
    > have very little in common [citation needed]
    - TeaBrain 2y ago
      Do you really need a citation that a non-verbal, uncommunicative and non-independent "non-functional" traditional autism case is different from what would often be referred to as "Asperger's", which is common amongst software developers? Or take people like Elon Musk, Bill Gross and David Byrne, who all claim to have Asperger's, Bill and David having been formally diagnosed. These people, who achieved great success, and went through most of their lives without needing a diagnosis, are clearly nothing like the non-functional patients with clearer traditional cases of autism.
      - seba_dos1 2y ago
        First you claimed that they "have very little in common", and now merely that it "is different"... although in the next sentence you go back to "clearly nothing like"?? You seem quite undecided about what you actually want to say. They're obviously "different", but there's plenty of reasons to believe that they have a lot in common, so going against established science should require some citations.
- faeriechangling 2y ago
  No, the problem was that psychiatrists could bill insurers more to treat autism than they could Asperger's. You aren't cynical enough. If it wasn't a scientific distinction, why are we still identifying autism subtypes?
  - didufis 2y ago
    I think this is precisely why for-profit healthcare is wild. If it weren’t for ideology we could get behind socialised care and cut out all of the nonsense.
  - TeaBrain 2y ago
    Do you have any information on patients could be billed more for an autism diagnosis? I've never heard this claim before.
    - faeriechangling 2y ago
      Mostly anecdotal, my school psychologist back in the day sure believed it, and this would vary from place to place. She was a champion of "You give children the diagnosis that gives them the services they need". Autism being the one which gave children the services they needed, and she often expressed frustration at not being able to get such a diagnosis. In general Aspergers basically meant no verbal delays, where Autism meant verbal delay. Autism was also around longer as a diagnosis. In general, I think theres a reason they changed the name of Aspergers to Autism and not the other way around.
      - spondylosaurus 2y ago
        I thought they changed the name in part because Hans Asperger was a Nazi collaborator.
      - TeaBrain 2y ago
        Interesting that the diagnosis of autism apparently wasn't available to her. Do you know what she would have been referring to by the autism diagnosis being able to get children the services they needed, that the "asperger's" diagnosis would not?
- TeaBrain 2y ago
  >diagnosis of Asperger's was unreliable and therefore useless If this is true, then in what way is the diagnosis of autism reliable, that the Asperger's label was not?
  - NeuroCoder 2y ago
    Asperger's was not reliably diagnosable between healthcare workers trained to diagnose it. In other words, a diagnosis of Asperger's in someone's medical chart was not a reliable way of knowing if they had Asperger's.
    - TeaBrain 2y ago
      This isn't really providing any clarity to the question, since you're simply restating your previous claim. How is a diagnosis of autism any more reliable?
      - NeuroCoder 2y ago
        As in it has a higher inter rater reliability. The statistical term of reliability that is used when describing the likelihood to reproduce a measure under similar conditions.
        TeaBrain 2y ago
        What matters here is not the general inter-rater reliability for all autism diagnoses, but only those for the patients which would have otherwise been described as having Asperger's, which can often present as a very mild disorder. Given that many Asperger's cases are mild, it is no surprise that there is low inter-rater reliability. Is there evidence that for this type of individual, there is a higher inter-rater reliability with the diagnosis of "autism"?
CalRobert 2y ago
It almost feels like a cynical ploy to nerf autism so insurance companies don't have to pay for anything. There's a huge, huge, difference between "I'm awkward" and "my kid cannot talk".

jtsiskin 2y ago

The expression you quoted is completely agreeing with you! It’s a play on the expected idiomatic ending “then you have met everyone with autism”, pointing out that the diagnosis is broad and everyone is different

greesil 2y ago
Why even have the word autism? It's almost meaningless.
- Spivak 2y ago
  "hot" is still a meaningful word even though 100 F°, 1000 F°, and 1,000,000 F° aren't comparable at all. They're nonetheless still all experiencing heat.
  - blargey 2y ago
    Yes, if we could pin it to a linear scale of Degrees Autistic (Farenheit), that could be estimated with reasonable precision for all day-to-day relevant values by feeling the nearby air on your skin, nobody would complain about "Austism" being too broad.
    - Spivak 2y ago
      Am I missing something you can though. That's actually kinda how it is. I detest the phrase "high functioning" but that group is roughly your outside temperatures. You'll notice the difference between 30° and 80° and the same temperature 72° can feel different in the summer, winter, before it rains, when it's humid/dry but is still the same intensity. Then there's 1000° degrees where (and this is someone I know) he stripped naked, ran through downtown, and yelled at random restaurant workers calling them fascists for not lettting him in and then got into a fight with the cops. I think broadly that's what the "spectrum" characterization is meant to convey. And you should expect this, in code there's one happy path and a million different ways to err, some more catastrophic than others.
    - 2y ago

saghm 2y ago

> Autism as a diagnostic classification is so broad that the non verbal are lumped in with those with rigidity behavior, when at least to me they seem like they should just have a different diagnosis. As someone with a diagnosis, I've gotten into the habit of referring to myself as "on the spectrum" when discussing with people rather than using a specific term. It helps emphasize the fact that there's a range of potential manifestations, and (hopefully) helps remind people that their expectations based on past experience might not fit my behavior exactly.

kelseyfrog 2y ago

To me the point of the phrase was to counter prejudice and gatekeeping. "You can't be autistic because I know another autistic person who does the opposite," is a sentiment that autistic people in my life have encountered. It doesn't extend to researchers because (arguably) researchers aren't in the business of telling people that because they are uncomfortable with behaviors associated with autism.