4 ms·

We're much better at diagnosing it than we used to be.

amatecha 5y ago
Agreed. I have a friend who has been autistic their entire life, but was only acknowledged/diagnosed in the past little while, in their 30's. Back when they were a little kid, it was interpreted as just being a challenging/picky/quirky child, nothing "diagnosis-worthy". If the medical system and society better understood autism back then, it would have been noticed and diagnosed back then. I have heard the same approximate story over and over.
skissane 5y ago
That’s disputed; another point of view is that “autism” is a label and we’ve increased the scope of that label to cover a lot of things which in the past were either given different labels or no label at all. There are a number of voices in the academic/professional community questioning the great and growing breadth of the “autism” label and the flimsiness of the scientific justification for its expansion (people such as Laurent Mottron, Lynn Waterhouse, Allen Frances)
- Rury 5y ago
  This. I think the problem is simply we're over-diagnosing autism. Basically borderline people would've been considered normal in the past, but are now considered autistic. Frankly, the entirety of symptoms involved in diagnosis sounds subject to a person's opinion of what people's behavior should be vs shouldn't be. Since this line is hard for everyone to agree on, we've come up with degrees of autism, like "high functioning" autism such as Asperger's syndrome. I'd argue, it's only when it's obvious (i.e. the person is largely dependent) while having said symptoms, that they're autistic... Just because someone behave's abnormally socially, has peculiar interests, and/or has delayed abilities (unless extreme), isn't sufficient IMO. Additionally, two different doctors may end up giving different diagnoses.
  - sascha_sl 5y ago
    Autism (and ASD) should really not be seen as this essentialist "yes or no". There are degrees to which people, considered autistic or not by your favorite arbitrary standard, exhibit autistic traits. And those traits are not strictly inherently better or worse than neurotypical traits. The standard for consideration as disorder should be the same as with most psychiatric disorders: Not mere presence, but causing issues that need support. But at the same time, the people that are doing fine with autistic traits are no less autistic. (Also, Asperger's has ceased existing a while ago)
    - skissane 5y ago
      > But at the same time, the people that are doing fine with autistic traits are no less autistic. I’d question that statement. People with BAP (broad autism phenotype) have autistic traits and are doing fine with them, but by definition are “less autistic” than people with ASD. A lot of people with other psychiatric disorders such as schizophrenia, can have significant autistic traits as symptoms of that other disorder (the symptomatic overlap between ASD and schizophrenia is much larger than many people appreciate, although it is believed that the similar symptoms nonetheless are caused by rather different processes) and obviously are not “doing fine”, but nonetheless are in a very real sense “less autistic” than a person with an actual ASD diagnosis > (Also, Asperger's has ceased existing a while ago) That’s not really true; the DSM-IV still exists, and professionals are still free to use it if they wish. Our son’s psychiatrist told me that he still sometimes gives children DSM-IV Asperger’s diagnoses if the parents feel particularly uncomfortable with the label of “autism” inherent in DSM-5 ASD.
      - aidenn0 5y ago
        If you have ASD, but learn coping skills are you not "less autistic?"
  - bayesianbot 5y ago
    I and many other autistic people would strongly disagree. Neurotypical vs ASD isn't some gradient like you seem to think, it's much bigger, clearer wall between us. I am one of those that you wouldn't diagnose autistic, but in reality me and my thoughts are much much much closer to the ones you would than neurotypicals. I wasn't diagnosed as a kid, partly because autism wasn't diagnosed at least in my country when I was born, partly because even though it was obvious to everyone how different I was my parents tried to pretend I'm just a normal kid. And partly because with time I honed my high quality human emulator to the perfection so at some point I could play that almost-"normal" kid part that they and society wanted from me. Doesn't mean I didn't constantly feel there's been a mistake, I've been born on wrong planet, in middle of different species that doesn't understand me and which I don't understand. Absolutely nothing about the world made sense, life was hard and strange even if I was extremely good at pretending it isn't. It all changed when I found out and found others like me. Nowadays I'd be diagnosed at two years old, and my life would have been so much easier. I wouldn't have the need to pretend (or mask as we call it) as much, which is a HUGE constant stress. I could understand the world and myself much better, and adjust my life knowing better why and how I'm different. I feel like I could have grown up to be much less of a broken person. There are millions and millions like me, many of whom still don't know and are thinking what is going on in this world. They should be diagnosed as early as possible so they could start enjoying life like I have in much healthier way after finding out. It's not really surprising that it was - and is - underdiagnosed and we're now finding more cases, as not that long time ago we didn't really diagnose it at all, and after that we only diagnosed the minority of cases who couldn't come up with an acceptable human emulator. And because the mental image we have of autism is so wrong. I spent decades trying to find people like me, disorders that would explain the things. I gave up, thinking I'm unique. But my mental image was wrong also, so I didn't really give it enough thought - autism was a list of symptoms on wikipedia page and Rainman - that's not me, it's just that my brain and thinking is completely different and nobody understands, I can't even tell anyone because it's impossible to explain. It wasn't until I randomly read an article written by autistic person, and like 1/4 way through it I knew I found my kind - before that nobody understood, and that article could have been word to word written by me, except he knew the reasons behind it.
- sascha_sl 5y ago
  I don't see how both can't be true. The diagnosis itself has changed a lot (retiring Aspergers, changing it to "ASD") to account for this though, and I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing. If you see it purely as a disorder (and thus a bad thing) maybe you have an interest in continued underdiagnosis, but many people now see autism as different, but not strictly worse or better.
  - skissane 5y ago
    > I don't see how both can't be true. Laurent Mottron believes that the original narrow view of autism had some genuine scientific value, but DSM-5 ASD has broadened the concept to the point that it has become scientifically meaningless. He presents the idea of a “spectrum” as essentially taking a wrong turn, and he argues the only way to get autism research back on track is to move away from the idea of a “spectrum” and return to a focus on “prototypical” autism Lynn Waterhouse goes further - she believes that even the original narrower concept of “autism” is a failed scientific hypothesis, and the best way forward is to drop the concept of “autism” entirely (and related concepts such as ASD, Asperger’s and PDD-NOS), and look for alternative constructs to replace it with (her tentative proposal is “phenotypes of neurodevelopmental social impairment”) Allen Frances has said that (in hindsight) he made a big mistake by agreeing to put Asperger’s in the DSM-IV. He says it was sold to him as a very rare disorder and he was shocked to see how frequently it came to be diagnosed. And he’s said that DSM-5 ASD is “even worse” than DSM-IV Asperger’s. (Like Mottron, unlike Waterhouse, he has no objection to DSM-III/IV autistic disorder; Mottron is less negative on DSM-IV Asperger’s than Frances, but I suspect there is actually less distance between them in practice on that issue than a cursory reading of their public statements might suggest.) While they don’t agree with each other in all the details, what they all have in common, is a critical attitude towards contemporary mainstream diagnostic practices - maybe I’m misunderstanding you, but your response sounded to me like an attempt to harmonise those criticisms away > I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing. I think “neurotypicality” is a myth. Nobody is “neurotypical”. As the English child psychiatrist Sami Timimi says, “we are all, all humanity, neurodiverse”.
    - 5y ago

Agreed. I have a friend who has been autistic their entire life, but was only acknowledged/diagnosed in the past little while, in their 30's. Back when they were a little kid, it was interpreted as just being a challenging/picky/quirky child, nothing "diagnosis-worthy". If the medical system and society better understood autism back then, it would have been noticed and diagnosed back then. I have heard the same approximate story over and over.

skissane 5y ago

That’s disputed; another point of view is that “autism” is a label and we’ve increased the scope of that label to cover a lot of things which in the past were either given different labels or no label at all. There are a number of voices in the academic/professional community questioning the great and growing breadth of the “autism” label and the flimsiness of the scientific justification for its expansion (people such as Laurent Mottron, Lynn Waterhouse, Allen Frances)

Rury 5y ago
This. I think the problem is simply we're over-diagnosing autism. Basically borderline people would've been considered normal in the past, but are now considered autistic. Frankly, the entirety of symptoms involved in diagnosis sounds subject to a person's opinion of what people's behavior should be vs shouldn't be. Since this line is hard for everyone to agree on, we've come up with degrees of autism, like "high functioning" autism such as Asperger's syndrome. I'd argue, it's only when it's obvious (i.e. the person is largely dependent) while having said symptoms, that they're autistic... Just because someone behave's abnormally socially, has peculiar interests, and/or has delayed abilities (unless extreme), isn't sufficient IMO. Additionally, two different doctors may end up giving different diagnoses.
- sascha_sl 5y ago
  Autism (and ASD) should really not be seen as this essentialist "yes or no". There are degrees to which people, considered autistic or not by your favorite arbitrary standard, exhibit autistic traits. And those traits are not strictly inherently better or worse than neurotypical traits. The standard for consideration as disorder should be the same as with most psychiatric disorders: Not mere presence, but causing issues that need support. But at the same time, the people that are doing fine with autistic traits are no less autistic. (Also, Asperger's has ceased existing a while ago)
  - skissane 5y ago
    > But at the same time, the people that are doing fine with autistic traits are no less autistic. I’d question that statement. People with BAP (broad autism phenotype) have autistic traits and are doing fine with them, but by definition are “less autistic” than people with ASD. A lot of people with other psychiatric disorders such as schizophrenia, can have significant autistic traits as symptoms of that other disorder (the symptomatic overlap between ASD and schizophrenia is much larger than many people appreciate, although it is believed that the similar symptoms nonetheless are caused by rather different processes) and obviously are not “doing fine”, but nonetheless are in a very real sense “less autistic” than a person with an actual ASD diagnosis > (Also, Asperger's has ceased existing a while ago) That’s not really true; the DSM-IV still exists, and professionals are still free to use it if they wish. Our son’s psychiatrist told me that he still sometimes gives children DSM-IV Asperger’s diagnoses if the parents feel particularly uncomfortable with the label of “autism” inherent in DSM-5 ASD.
    - aidenn0 5y ago
      If you have ASD, but learn coping skills are you not "less autistic?"
- bayesianbot 5y ago
  I and many other autistic people would strongly disagree. Neurotypical vs ASD isn't some gradient like you seem to think, it's much bigger, clearer wall between us. I am one of those that you wouldn't diagnose autistic, but in reality me and my thoughts are much much much closer to the ones you would than neurotypicals. I wasn't diagnosed as a kid, partly because autism wasn't diagnosed at least in my country when I was born, partly because even though it was obvious to everyone how different I was my parents tried to pretend I'm just a normal kid. And partly because with time I honed my high quality human emulator to the perfection so at some point I could play that almost-"normal" kid part that they and society wanted from me. Doesn't mean I didn't constantly feel there's been a mistake, I've been born on wrong planet, in middle of different species that doesn't understand me and which I don't understand. Absolutely nothing about the world made sense, life was hard and strange even if I was extremely good at pretending it isn't. It all changed when I found out and found others like me. Nowadays I'd be diagnosed at two years old, and my life would have been so much easier. I wouldn't have the need to pretend (or mask as we call it) as much, which is a HUGE constant stress. I could understand the world and myself much better, and adjust my life knowing better why and how I'm different. I feel like I could have grown up to be much less of a broken person. There are millions and millions like me, many of whom still don't know and are thinking what is going on in this world. They should be diagnosed as early as possible so they could start enjoying life like I have in much healthier way after finding out. It's not really surprising that it was - and is - underdiagnosed and we're now finding more cases, as not that long time ago we didn't really diagnose it at all, and after that we only diagnosed the minority of cases who couldn't come up with an acceptable human emulator. And because the mental image we have of autism is so wrong. I spent decades trying to find people like me, disorders that would explain the things. I gave up, thinking I'm unique. But my mental image was wrong also, so I didn't really give it enough thought - autism was a list of symptoms on wikipedia page and Rainman - that's not me, it's just that my brain and thinking is completely different and nobody understands, I can't even tell anyone because it's impossible to explain. It wasn't until I randomly read an article written by autistic person, and like 1/4 way through it I knew I found my kind - before that nobody understood, and that article could have been word to word written by me, except he knew the reasons behind it.
sascha_sl 5y ago
I don't see how both can't be true. The diagnosis itself has changed a lot (retiring Aspergers, changing it to "ASD") to account for this though, and I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing. If you see it purely as a disorder (and thus a bad thing) maybe you have an interest in continued underdiagnosis, but many people now see autism as different, but not strictly worse or better.
- skissane 5y ago
  > I don't see how both can't be true. Laurent Mottron believes that the original narrow view of autism had some genuine scientific value, but DSM-5 ASD has broadened the concept to the point that it has become scientifically meaningless. He presents the idea of a “spectrum” as essentially taking a wrong turn, and he argues the only way to get autism research back on track is to move away from the idea of a “spectrum” and return to a focus on “prototypical” autism Lynn Waterhouse goes further - she believes that even the original narrower concept of “autism” is a failed scientific hypothesis, and the best way forward is to drop the concept of “autism” entirely (and related concepts such as ASD, Asperger’s and PDD-NOS), and look for alternative constructs to replace it with (her tentative proposal is “phenotypes of neurodevelopmental social impairment”) Allen Frances has said that (in hindsight) he made a big mistake by agreeing to put Asperger’s in the DSM-IV. He says it was sold to him as a very rare disorder and he was shocked to see how frequently it came to be diagnosed. And he’s said that DSM-5 ASD is “even worse” than DSM-IV Asperger’s. (Like Mottron, unlike Waterhouse, he has no objection to DSM-III/IV autistic disorder; Mottron is less negative on DSM-IV Asperger’s than Frances, but I suspect there is actually less distance between them in practice on that issue than a cursory reading of their public statements might suggest.) While they don’t agree with each other in all the details, what they all have in common, is a critical attitude towards contemporary mainstream diagnostic practices - maybe I’m misunderstanding you, but your response sounded to me like an attempt to harmonise those criticisms away > I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing. I think “neurotypicality” is a myth. Nobody is “neurotypical”. As the English child psychiatrist Sami Timimi says, “we are all, all humanity, neurodiverse”.
  - 5y ago