6 ms·

"Prevention strategies" As an autistic person, no thanks. Let people be autistic.

Slava_Propanei 2y ago
[dead]
2four2 2y ago
Autistic as an identity and autism as a disease are different things that are difficult to uncouple. Similarly to obesity, it's difficult to talk about the health aspect without people being sensitive about the identity aspect. I find it's useful when reading about research to empathize with the authors and realize their work is an attempt to be constructive instead of providing social commentary.
- mewpmewp2 2y ago
  Autism is not a disease. It's a diverging feature.
  - anon84873628 2y ago
    Saying this doesn't make you hip, woke, or cool. Autism is clearly a "spectrum" disorder that is not fully understood or categorized yet, which is exactly why we need this type of research to reach a conclusive, testable biological basis. To portray severely afflicted people as simply "neurodiverse" and dismiss treatment options for them, is far more bigoted than the reverse.
    - mewpmewp2 2y ago
      I don't care about being hip, woke or cool. It's just my perspective of the World. Also speaking of experience, I don't see how I have a disease for example. In my view, it's mostly the environment provided that's at fault. E.g. social expectations. I think it's a good thing for there to be variance of the way people perceive the World. I had a rough childhood, but I wouldn't have wanted someone to change who I am. I had a rough childhood because of the expected standards for how a person should behave or be socially. Now as I am older, and more confident, successful and have proven that given good environment I can do amazing, I understand how ridiculous people are being with their social requirements. None of it is needed. Also I find it quite funny how people treat labels in psychiatry as some sort of gospel or an actual thing.
  - munchler 2y ago
    Some people are severely disabled by autism. Are you suggesting that we should just let them suffer?
    - mewpmewp2 2y ago
      It's not the autism that does any sort of disabling. If there are some sort of issues that are disabling someone's way to live normally, deal with them, but don't use autism as a label or call it a disease. There's no "autism" as a "disease" that causes those symptoms.
      - az09mugen 2y ago
        Autism is a condition which cause is not exactly clear, but there are clearly identified symptoms "attached" to the "word/label" "autism". Which is how you define/classify/identify a word, and in this case a disease or a disability if you prefer. May no parents with autistic children ever read your comment. I suggest you take a closer to the definition : https://en.m.wikipedia.org/wiki/Autism_spectrum https://en.m.wikipedia.org/wiki/Autism_spectrum
      - Perenti 2y ago
        So what's the issue with non-verbal "autistic" people then? All those people with the same symptoms and presentation, if that's not a disease or better, a disorder, then what is it?
  - dukeyukey 2y ago
    How do you square that with the severe cases of autism? The people who will never be able to live independently?
    - Tijdreiziger 2y ago
      There are also non-autistic people who aren’t able to live independently.
      - dukeyukey 2y ago
        Absolutely, but nobody tries to dissuade people from finding a cure to most conditions that stop independent living.
    - mewpmewp2 2y ago
      There are specific challenges every person in the World faces. Deal with these specific challenges. But don't group bunch of people as autistic and then go on to call it a disease. Many of the challenges are caused by the environment or flawed social expectations.
- ModernMech 2y ago
  I'm being productive by pushing back and saying that when people say that autism needs to be cured and prevented, that they shouldn't say that, because autism doesn't need to be cured and prevented. It's not a disease, but in this society it is a disability, and there's a stigma and lack of understanding around autism in general. What we can do today to make life better for autistic people everywhere is to spread awareness and acceptance of autism. Not talk about curing and preventing it. That's stigmatizing.
  - anon84873628 2y ago
    Of course society should become more accepting and accommodating of differently-abled people of all types. But can you really look at the extreme end of the Autism spectrum and say that isn't a disease or disorder? One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.
    - thompsonhh 2y ago
      [dead]
    - MajimasEyepatch 2y ago
      You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
      - pseudalopex 2y ago
        Those experiences wouldn't have happened if the autistic people were medicated to neurotypical or neurotypical people were more accepting of autistic people. And many autistic people would reject being medicated to neurotypical despite those experiences.
      - ModernMech 2y ago
shipman05 2y ago
I understand the sentiment, but there's a reason it's called the autism spectrum. I work with several software engineers with autism who are as capable as their peers. Sure they may have behavioral quirks, but not significantly more so than the normal variation in human behavior. Their brains don't seem to work in an inferior or problematic way, just different. On the other hand, I have a close relative with more severe autism who could never read and understand this article, could never type a comment such as yours. She's incapable of holding a job or living on her own without assistance. Her mother passed away young, and her older sister, just 19 at the time, had to take on the responsibility of being her sole caregiver, and she will have that burden for the rest of their lives. For some it may be a different variation of the human experience, but for cases as severe as my relative's, I find it hard to believe that a cure or prevention for autism wouldn't be a massive quality of life improvement for all involved.
- ModernMech 2y ago
  Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by. I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats. I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not. The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees. My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society. What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak. Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?
oblio 2y ago
This is just ridiculous, just like some deaf people wanting their kids to be deaf to be part of the deaf community. We were born with ears for a reason, same thing, our brains are to a huge percentage built for social skills for a reason. We can call them however we want but all these are basically diseases of various forms. People can choose their hair color, to grow their nails long, their clothes or the myriad other things that allow us to express our uniqueness, without making life stupidly difficult for no reason when it's already super hard.
squigz 2y ago
If you don't mind being on the spectrum, that's great for you. Some of us are looking forward to more research like this. Many of us don't want to go through this struggle forever, or make another generation go through it, all while waiting for society to get its shit together and completely reorient itself to be neurodivergent-friendly? No thanks.
the_plus_one 2y ago
Speak for yourself. As an autistic person, if I could get rid of it, I absolutely would.
Perenti 2y ago
I'm diagnosed ASD as well and I strongly disagree with your statement as it stands. There are people who are profoundly impacted by autism. I _can_ go to a shopping center. I don't like it. I may have to hide in the bathrooms for a while a few times while visiting but I _can_ do it. But I know people who spend most of their lives in fear, because there is just so damn much going on around them all the time. Their senses are turned up to the point that the sound of their own breath is like a lion roaring. The splash of light across the curtains as a car turns into the street is like a lightning flash. Sounds, sights, flavours, smells, tactile sensations all turned up to 15 on a scale of 1 to 10. Often these kinds of people never learn to talk, or read. They end up living in homes (modern asylums) because they need constant care. And inside they're screaming in terror all the time. Sometimes they scream aloud. I believe these people deserve better. Helping prevent the development of severe disability is what I believe the article is talking about, not eugenics.

[dead]

Autistic as an identity and autism as a disease are different things that are difficult to uncouple. Similarly to obesity, it's difficult to talk about the health aspect without people being sensitive about the identity aspect. I find it's useful when reading about research to empathize with the authors and realize their work is an attempt to be constructive instead of providing social commentary.

mewpmewp2 2y ago
Autism is not a disease. It's a diverging feature.
- anon84873628 2y ago
  Saying this doesn't make you hip, woke, or cool. Autism is clearly a "spectrum" disorder that is not fully understood or categorized yet, which is exactly why we need this type of research to reach a conclusive, testable biological basis. To portray severely afflicted people as simply "neurodiverse" and dismiss treatment options for them, is far more bigoted than the reverse.
  - mewpmewp2 2y ago
    I don't care about being hip, woke or cool. It's just my perspective of the World. Also speaking of experience, I don't see how I have a disease for example. In my view, it's mostly the environment provided that's at fault. E.g. social expectations. I think it's a good thing for there to be variance of the way people perceive the World. I had a rough childhood, but I wouldn't have wanted someone to change who I am. I had a rough childhood because of the expected standards for how a person should behave or be socially. Now as I am older, and more confident, successful and have proven that given good environment I can do amazing, I understand how ridiculous people are being with their social requirements. None of it is needed. Also I find it quite funny how people treat labels in psychiatry as some sort of gospel or an actual thing.
- munchler 2y ago
  Some people are severely disabled by autism. Are you suggesting that we should just let them suffer?
  - mewpmewp2 2y ago
    It's not the autism that does any sort of disabling. If there are some sort of issues that are disabling someone's way to live normally, deal with them, but don't use autism as a label or call it a disease. There's no "autism" as a "disease" that causes those symptoms.
    - az09mugen 2y ago
      Autism is a condition which cause is not exactly clear, but there are clearly identified symptoms "attached" to the "word/label" "autism". Which is how you define/classify/identify a word, and in this case a disease or a disability if you prefer. May no parents with autistic children ever read your comment. I suggest you take a closer to the definition : https://en.m.wikipedia.org/wiki/Autism_spectrum https://en.m.wikipedia.org/wiki/Autism_spectrum
    - Perenti 2y ago
      So what's the issue with non-verbal "autistic" people then? All those people with the same symptoms and presentation, if that's not a disease or better, a disorder, then what is it?
- dukeyukey 2y ago
  How do you square that with the severe cases of autism? The people who will never be able to live independently?
  - Tijdreiziger 2y ago
    There are also non-autistic people who aren’t able to live independently.
    - dukeyukey 2y ago
      Absolutely, but nobody tries to dissuade people from finding a cure to most conditions that stop independent living.
  - mewpmewp2 2y ago
    There are specific challenges every person in the World faces. Deal with these specific challenges. But don't group bunch of people as autistic and then go on to call it a disease. Many of the challenges are caused by the environment or flawed social expectations.
ModernMech 2y ago
I'm being productive by pushing back and saying that when people say that autism needs to be cured and prevented, that they shouldn't say that, because autism doesn't need to be cured and prevented. It's not a disease, but in this society it is a disability, and there's a stigma and lack of understanding around autism in general. What we can do today to make life better for autistic people everywhere is to spread awareness and acceptance of autism. Not talk about curing and preventing it. That's stigmatizing.
- anon84873628 2y ago
  Of course society should become more accepting and accommodating of differently-abled people of all types. But can you really look at the extreme end of the Autism spectrum and say that isn't a disease or disorder? One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.
  - thompsonhh 2y ago
    [dead]
  - MajimasEyepatch 2y ago
    You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
    - pseudalopex 2y ago
      Those experiences wouldn't have happened if the autistic people were medicated to neurotypical or neurotypical people were more accepting of autistic people. And many autistic people would reject being medicated to neurotypical despite those experiences.
    - ModernMech 2y ago

shipman05 2y ago

I understand the sentiment, but there's a reason it's called the autism spectrum. I work with several software engineers with autism who are as capable as their peers. Sure they may have behavioral quirks, but not significantly more so than the normal variation in human behavior. Their brains don't seem to work in an inferior or problematic way, just different. On the other hand, I have a close relative with more severe autism who could never read and understand this article, could never type a comment such as yours. She's incapable of holding a job or living on her own without assistance. Her mother passed away young, and her older sister, just 19 at the time, had to take on the responsibility of being her sole caregiver, and she will have that burden for the rest of their lives. For some it may be a different variation of the human experience, but for cases as severe as my relative's, I find it hard to believe that a cure or prevention for autism wouldn't be a massive quality of life improvement for all involved.

ModernMech 2y ago
Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by. I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats. I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not. The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees. My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society. What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak. Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?

oblio 2y ago

This is just ridiculous, just like some deaf people wanting their kids to be deaf to be part of the deaf community. We were born with ears for a reason, same thing, our brains are to a huge percentage built for social skills for a reason. We can call them however we want but all these are basically diseases of various forms. People can choose their hair color, to grow their nails long, their clothes or the myriad other things that allow us to express our uniqueness, without making life stupidly difficult for no reason when it's already super hard.

squigz 2y ago

If you don't mind being on the spectrum, that's great for you. Some of us are looking forward to more research like this. Many of us don't want to go through this struggle forever, or make another generation go through it, all while waiting for society to get its shit together and completely reorient itself to be neurodivergent-friendly? No thanks.

the_plus_one 2y ago

Speak for yourself. As an autistic person, if I could get rid of it, I absolutely would.

Perenti 2y ago

I'm diagnosed ASD as well and I strongly disagree with your statement as it stands. There are people who are profoundly impacted by autism. I _can_ go to a shopping center. I don't like it. I may have to hide in the bathrooms for a while a few times while visiting but I _can_ do it. But I know people who spend most of their lives in fear, because there is just so damn much going on around them all the time. Their senses are turned up to the point that the sound of their own breath is like a lion roaring. The splash of light across the curtains as a car turns into the street is like a lightning flash. Sounds, sights, flavours, smells, tactile sensations all turned up to 15 on a scale of 1 to 10. Often these kinds of people never learn to talk, or read. They end up living in homes (modern asylums) because they need constant care. And inside they're screaming in terror all the time. Sometimes they scream aloud. I believe these people deserve better. Helping prevent the development of severe disability is what I believe the article is talking about, not eugenics.