8 ms·

This is about people diagnosed before the age of 5, they're almost all cases of severe autism. That's very different from the kind of autism you're talking abou

This is about people diagnosed before the age of 5, they're almost all cases of severe autism. That's very different from the kind of autism you're talking about. People who are permanently unable to live independently have a condition that should be prevented if possible.

ModernMech 2y ago
As a spectrum, autism presents in many ways, but it's all considered "autism" at this point. There are not different "kinds". Sometimes "severe" autism at an early age calms down as a person grows. Sometimes "mild" autism gets worse as someone becomes dysregulated and overstimulated. Many times autism is missed in women and POC because they mask more readily than boys. Sometimes it's missed in boys because it's explained as "boys being boys". Either way, why don't you ask autistic people if they want to be "cured" or "accommodated"? I think you'll find the answer is "accommodation". It seems like, to me at least, it's only not autistic people who talk about "curing" autism, as if they'd be doing the world a favor if there were no more autistic people.
- selimthegrim 2y ago
  I don’t see why POC would mask this easier
  - deleted 2y ago
    [deleted]
  - spondylosaurus 2y ago
    IIRC it's not really masking, more that children of color are more likely to get labeled "disruptive" or "defiant" than diagnosed as autistic, at least compared to their white peers. Two kids could exhibit the same behavior, but one is correctly recognized as having a meltdown and the other is written off as a troublemaker.
- zwaps 2y ago
  Why not ask autistic people Have you ever even seen someone with severe autism?
  - robocat 2y ago
    Strongly yes as per other comment: https://news.ycombinator.com/item?id=40329772 https://news.ycombinator.com/item?id=40329772
    - Perenti 2y ago
      But she could talk? And touch another person without screaming? Because _severe_ autism is non-tactile and non-verbal.
      - ModernMech 2y ago
        Autism is a spectrum disorder, but while you may be picturing it as a continuum from less autistic to severely autistic, with nonverbal autistic people at one end and high functioning autistic people on the other, that is not the reality of autism. Here is a good blog post written by someone, with a graphic that shows the difference between how people think of autism versus how others experience it. https://themighty.com/topic/autism-spectrum-disorder/autism-spectrum-wheel/ https://themighty.com/topic/autism-spectrum-disorder/autism-... As they write, this means some autistic people who are nonverbal can go to college, while the author doesn’t have that capacity despite being verbal. I’ve seen many times in this thread people pointing toward nonverbal autistic people as a reason we should try to cure autism. But it’s not clear to me that people here even understand autism enough to be forming opinions on what we should do to “fix” it. I think if someone is not autistic they should first try very hard to understand a variety of autistic experiences before forming an opinion on what to do about it. As for me, to answer the original question my neighbor growing up was nonverbal. We used to play legos together. He could communicate, but he didn’t talk and he didn’t like being touched.
        robocat 2y ago
        Thank you for your candid comment. It is frustrating to engage via comments and I have learned something from your comments. All labels including "autistic" are usually very misunderstood - often even amongst people with the same label. Hopefully commenters here are more understanding - given that if you work in the software field you very often deal with people with mild traits of autism. All the best.
- Scarblac 2y ago
  I have autism myself and so do both my kids, I would love it if there was some way to lessen it. It's a great hindrance for me, all the time I want to do things that I feel I should be able to do, but then run into various walls. My children (15 and 10) are learning about themselves but they haven't found an advantage of their autism yet. But, we function well enough, I can hold down jobs and so will they, it's a set of things we're not good at but we can deal. The severe cases I know, I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
  - ModernMech 2y ago
    Thank you for sharing your experience, I agree there are so many walls! I guess for me, I can't even perceive of a state of mind which would not see the walls. And I worry... what would change about me if I could see through the walls? Would I still be me? Because I like me, so I wonder what would happen. My great fear when I hear talks of a "cure" is that it will be used as an excuse to cleanse ahem I mean "cure" people like me and you and your sons. So you can understand why I don't want to go down that road. It's been done before. Although I can't conceive of a world where I can see through the walls, I can picture a world where the walls are not there, and that's what I advocate for. > I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have. It's true, we often wonder what those people would want. People have opinions as to whether they should have existed at all in the first place. I have a friend with Down's syndrome, and she's awesome, and I'm not sure what she would say in this situation, but I know as far as I'm concerned I don't want to live in a world where she doesn't exist exactly the way she is. So as far as autistic people who cannot advocate for themselves, I'm not going to make the decision for them, and I don't think anyone else should either.
pseudalopex 2y ago
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- Scarblac 2y ago
  No, 10% - 20%. The article says: > For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.
faeriechangling 2y ago
I was diagnosed at 4, I have legal paperwork proving I permanently cannot live independently, as such paperwork is necessary for impoverished families and adults to access certain social and financial benefits. I currently live independently. Despite me being in this category you describe, I do not believe I have a condition that should be prevented if possible. I see researchers like FTA as having a conflict of interest - as wanting to portray themselves as the saviours of those shackled by their metabolism - which is best done by painting the saved in as negative a light as possible. I believe that I've been unfairly defamed and stigmatised by the medical establishment spreading lies and half-truths of convenience to promote the need for the general public to finance schemes to cure this horrible condition and take care of desperate children and families. I've dedicated my life towards enabling others from a trap of dependance caused by poverty specifically, because what else can I really fucking do to change perceptions besides being one person who enabled several others to live independently? Yet it's not enough. So that's why I come into hacker news threads, throwing shade on the general concept of "Autism", a homogenous condition which caused by concrete biological phenomenon, and our need to cure it. Since to me, it was and always has been, a behaviourist diagnosis of clinical convenience there to serve social ends which gets reified into essentialist bullshit featuring an overbroad label defined by "deficits" that is taken far more seriously than the science warrants which dooms people to stereotyped perceptions, pathologisation, stigmatisation, segregation, eugenics, and warped medical care. If something should be prevented it's doctors inane, fatalistic, and biased prophecies that somebody will never be able to live independently. It's not proven somebody cannot live independently until they die as dependants, what you describe are only opinions. I have refuted N=1 such opinions already and that won't be the last one.
- Perenti 2y ago
  The level of severity being discussed here is non-verbal, screaming all the time, just in a state of abject terror. These people have _severe_ ASD.
  - faeriechangling 2y ago
    No, the discussion here was about the 5 year olds diagnosed with autism in the study. The severity of their autism was then argued based on how few of children with autism diagnosed by age 5 were able to live independently - and I directly questioned the validity of these statistics by pointing out the ulterior motives people have for making such a declaration, and how this isn't actually based on subjective opinions and not empirical measurements. You respond to my criticism by proclaiming that we're talking about severely autistic children who are non-verbal and screaming all the time. The average age of diagnosis is between 4-5, around half of the current autistic population were diagnosed by 5, most autism diagnosis in the modern day is for "mild autism", even for early diagnosis. Don't forget that the ever loosening autism diagnostic criteria, half of those diagnosed today would have never been diagnosed in 2014, how mild the autism is of who we're talking about is milder than what most people are familiar with in their past experiences with autistic people.

ModernMech 2y ago

As a spectrum, autism presents in many ways, but it's all considered "autism" at this point. There are not different "kinds". Sometimes "severe" autism at an early age calms down as a person grows. Sometimes "mild" autism gets worse as someone becomes dysregulated and overstimulated. Many times autism is missed in women and POC because they mask more readily than boys. Sometimes it's missed in boys because it's explained as "boys being boys". Either way, why don't you ask autistic people if they want to be "cured" or "accommodated"? I think you'll find the answer is "accommodation". It seems like, to me at least, it's only not autistic people who talk about "curing" autism, as if they'd be doing the world a favor if there were no more autistic people.

selimthegrim 2y ago
I don’t see why POC would mask this easier
- deleted 2y ago
  [deleted]
- spondylosaurus 2y ago
  IIRC it's not really masking, more that children of color are more likely to get labeled "disruptive" or "defiant" than diagnosed as autistic, at least compared to their white peers. Two kids could exhibit the same behavior, but one is correctly recognized as having a meltdown and the other is written off as a troublemaker.
zwaps 2y ago
Why not ask autistic people Have you ever even seen someone with severe autism?
- robocat 2y ago
  Strongly yes as per other comment: https://news.ycombinator.com/item?id=40329772 https://news.ycombinator.com/item?id=40329772
  - Perenti 2y ago
    But she could talk? And touch another person without screaming? Because _severe_ autism is non-tactile and non-verbal.
    - ModernMech 2y ago
      Autism is a spectrum disorder, but while you may be picturing it as a continuum from less autistic to severely autistic, with nonverbal autistic people at one end and high functioning autistic people on the other, that is not the reality of autism. Here is a good blog post written by someone, with a graphic that shows the difference between how people think of autism versus how others experience it. https://themighty.com/topic/autism-spectrum-disorder/autism-spectrum-wheel/ https://themighty.com/topic/autism-spectrum-disorder/autism-... As they write, this means some autistic people who are nonverbal can go to college, while the author doesn’t have that capacity despite being verbal. I’ve seen many times in this thread people pointing toward nonverbal autistic people as a reason we should try to cure autism. But it’s not clear to me that people here even understand autism enough to be forming opinions on what we should do to “fix” it. I think if someone is not autistic they should first try very hard to understand a variety of autistic experiences before forming an opinion on what to do about it. As for me, to answer the original question my neighbor growing up was nonverbal. We used to play legos together. He could communicate, but he didn’t talk and he didn’t like being touched.
      - robocat 2y ago
        Thank you for your candid comment. It is frustrating to engage via comments and I have learned something from your comments. All labels including "autistic" are usually very misunderstood - often even amongst people with the same label. Hopefully commenters here are more understanding - given that if you work in the software field you very often deal with people with mild traits of autism. All the best.
Scarblac 2y ago
I have autism myself and so do both my kids, I would love it if there was some way to lessen it. It's a great hindrance for me, all the time I want to do things that I feel I should be able to do, but then run into various walls. My children (15 and 10) are learning about themselves but they haven't found an advantage of their autism yet. But, we function well enough, I can hold down jobs and so will they, it's a set of things we're not good at but we can deal. The severe cases I know, I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
- ModernMech 2y ago
  Thank you for sharing your experience, I agree there are so many walls! I guess for me, I can't even perceive of a state of mind which would not see the walls. And I worry... what would change about me if I could see through the walls? Would I still be me? Because I like me, so I wonder what would happen. My great fear when I hear talks of a "cure" is that it will be used as an excuse to cleanse ahem I mean "cure" people like me and you and your sons. So you can understand why I don't want to go down that road. It's been done before. Although I can't conceive of a world where I can see through the walls, I can picture a world where the walls are not there, and that's what I advocate for. > I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have. It's true, we often wonder what those people would want. People have opinions as to whether they should have existed at all in the first place. I have a friend with Down's syndrome, and she's awesome, and I'm not sure what she would say in this situation, but I know as far as I'm concerned I don't want to live in a world where she doesn't exist exactly the way she is. So as far as autistic people who cannot advocate for themselves, I'm not going to make the decision for them, and I don't think anyone else should either.

pseudalopex 2y ago

Scarblac 2y ago
No, 10% - 20%. The article says: > For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.

faeriechangling 2y ago

I was diagnosed at 4, I have legal paperwork proving I permanently cannot live independently, as such paperwork is necessary for impoverished families and adults to access certain social and financial benefits. I currently live independently. Despite me being in this category you describe, I do not believe I have a condition that should be prevented if possible. I see researchers like FTA as having a conflict of interest - as wanting to portray themselves as the saviours of those shackled by their metabolism - which is best done by painting the saved in as negative a light as possible. I believe that I've been unfairly defamed and stigmatised by the medical establishment spreading lies and half-truths of convenience to promote the need for the general public to finance schemes to cure this horrible condition and take care of desperate children and families. I've dedicated my life towards enabling others from a trap of dependance caused by poverty specifically, because what else can I really fucking do to change perceptions besides being one person who enabled several others to live independently? Yet it's not enough. So that's why I come into hacker news threads, throwing shade on the general concept of "Autism", a homogenous condition which caused by concrete biological phenomenon, and our need to cure it. Since to me, it was and always has been, a behaviourist diagnosis of clinical convenience there to serve social ends which gets reified into essentialist bullshit featuring an overbroad label defined by "deficits" that is taken far more seriously than the science warrants which dooms people to stereotyped perceptions, pathologisation, stigmatisation, segregation, eugenics, and warped medical care. If something should be prevented it's doctors inane, fatalistic, and biased prophecies that somebody will never be able to live independently. It's not proven somebody cannot live independently until they die as dependants, what you describe are only opinions. I have refuted N=1 such opinions already and that won't be the last one.

Perenti 2y ago
The level of severity being discussed here is non-verbal, screaming all the time, just in a state of abject terror. These people have _severe_ ASD.
- faeriechangling 2y ago
  No, the discussion here was about the 5 year olds diagnosed with autism in the study. The severity of their autism was then argued based on how few of children with autism diagnosed by age 5 were able to live independently - and I directly questioned the validity of these statistics by pointing out the ulterior motives people have for making such a declaration, and how this isn't actually based on subjective opinions and not empirical measurements. You respond to my criticism by proclaiming that we're talking about severely autistic children who are non-verbal and screaming all the time. The average age of diagnosis is between 4-5, around half of the current autistic population were diagnosed by 5, most autism diagnosis in the modern day is for "mild autism", even for early diagnosis. Don't forget that the ever loosening autism diagnostic criteria, half of those diagnosed today would have never been diagnosed in 2014, how mild the autism is of who we're talking about is milder than what most people are familiar with in their past experiences with autistic people.