6 ms·

Being autistic myself, I feel conflicted about trying to "cure autism" Every day is challenging because I have to manage my energy, mask in social situations a

Being autistic myself, I feel conflicted about trying to "cure autism" Every day is challenging because I have to manage my energy, mask in social situations and at work, etc On the other hand, I like who I am and I'm also very good at what I do because my brain is structured the way it is. I can imagine a society that is structured in a way, where I don't need the accommodations I'm currently dependent on If the negative impacts I'm experiencing are a consequence of the how we've structured our society, then I don't think it's autistic people who need to change to fit in Of course there are much more severe cases than me where autistic people need much more support and have severe learning disabilities, where it could be a huge improvement to quality of life If it was possible to fully trust that a hypothetical "cure" would only be used in these severe cases, I might be excited about a potential breakthrough, but historically this unfortunately haven't been the case

f6v 2mo ago
> If it was possible to fully trust that a hypothetical "cure" would only be used in these severe cases Isn’t it like the Ozempic? Some take it, some don’t.
- applfanboysbgon 2mo ago
  They have a valid concern. Unlike obesity, people with anything regarded as an intellectual disability are liable to have other people attempting to make decisions on their behalf, denying them agency over their own treatment, and legal systems will often enforce this denial of agency.
dns_snek 2mo ago
I see this sentiment often, but only when it comes to autism. How is this different from other disorders, disabilities, illnesses? You could make the exact same arguments for blindness. Every day is challenging, difficulties are mostly a consequence of how we've structured society, it's other people who should accommodate those who have different needs, etc. This narrative seems to originate from, and is perpetuated within online autism communities. I think it's great that people feel content with the way they are but I don't understand the animosity towards a mere suggestion that a cure should exist. I'm familiar with the history behind it and I'm on high alert when someone ventures into eugenics, however I firmly believe that we should be looking for a cure, just like we do for every other illness and disorder.
- jimnotgym 2mo ago
  Because many autistic people have superpowers in some areas, like systems thinking, thinking outside the box and maybe suprisingly reading people. If you had a superpower, but it came with a curse, that you couldn't always get to work on time, would you trade it in for a normal life? On the other hand, i don't see why a company wouldn't accommodate someone's minor quirks to get access to a superpower.
  - dns_snek 2mo ago
    I'm well aware and I don't have a problem with you or anyone else living life the way you want. This doesn't explain animosity towards treatment/cure research.
    - jimnotgym 2mo ago
      Does it not? When you 'cure' the lateness you lose the superpower too. Now you have another boring normie doing a workmanlike job. I think the reason for the animosity is the assumption that it is it a disease or disorder in the first place. It presumes that rather than being different, it is wrong. Perhaps what is wrong, is neurotypical people insisting that the more gifted people have to be bent and twisted and forced to conform to the world as they want it. Perhaps because their boring and unimaginative minds can't stand the idea that someone else could lead a different life to them. Or, and have heard this, they are annoyed that the talented person with different needs gets to come in late some days... and they feel they are missing out themselves on a lie-in.
      - dns_snek 2mo ago
        No it doesn't explain the animosity because nobody is forcing you to take the cure, but there are people who desperately want a cure.
        jimnotgym 2mo ago
        Are they desperate for the cure, because they are forced to work with people can't accept them for who they are? Because they are exhausted from years of masking, because you can't succeed unless you fit in? Do they desperately want the 'cure'? Or do they want the problem of fitting in to a normie world to go away?
saidnooneever 2mo ago
i liken it to ADHD medicine. if you give it early in life then people often end up using it and benefitting from it. Later life diagnoses see people not take the medicine because their condition has become their person and changing that feels like it changes them too much from themselves. Ultimately its all about being able to manage your life. If you run into troubles due to some condition it can cause to want a drug for it, but if you can manage often it can feels wrong to take it.
- dns_snek 2mo ago
  > Later life diagnoses see people not take the medicine because their condition has become their person and changing that feels like it changes them too much from themselves. I also see this sentiment frequently but as someone who was diagnosed later in life I couldn't relate to it less. The scattered brain has lead me down some interesting (and fruitful) paths I wouldn't have explored otherwise, but 95% of the time it just distracts me from goals that are actually meaningful to me in the long term, and adds social friction and conflict. I'd like to see someone study why there's such a stark difference in how people perceive it. Stimulant medication, good sleep, physical activity all help somewhat but they just take it down a notch. There are some aspects where they help a lot and others where they barely make a difference.
drcongo 2mo ago
The flip side - I don't think there's a single upside to the ASD traits I have, I don't like myself, and I would absolutely love to know what it feels like to not have ASD.
- ssl-3 2mo ago
  I think it'd be neat to be able to switch it off temporarily. One of my greatest strengths is diving deeply into unfamiliar technical rabbit holes that relate to my own innate areas interest, and get useful results quickly. This is a quality that separates me from most others and I enjoy doing this when the opportunity arises. But I can't necessarily turn it off; I don't always get a choice about whether I'm going to be diving into a thing or not. Overall, I think this has has been a valuable set of traits. But my greatest weaknesses are...just about everything else. For stuff that is outside of the subset of things that are innately interesting, I often find them difficult to grasp. It can be challenging to get my head around some stuff that many others can do without much effort at all. I can usually get there eventually; it just always takes more work for me than it would for a more-typical person, and I don't necessarily learn them in the same ways that a normal person might. It'd be fun to see how the world would work for me if these qualities were averaged out, but long-term it would mean that many aspects of my life would have to be shaped very differently. Therefore, I would not want it to be permanent without first spending some time visiting the other side of the fence.
- Scandiravian 2mo ago
  OP here First of all, I'm genuinely sorry to hear that you're struggling with you self-worth because of your symptoms I don't know you or your story, so I'm not going to assume that my experience is comparable to yours. This is why I'm conflicted about whether I would want a "cure" My hesitancy against wanting one is based solely on my own life experience. I was diagnosed as an adult and I had struggled with my self-worth and had been chronically depressed since I was a child. If someone had offered me a "cure" so I could fit in at that point, I'd probably have taken it The thing is that after I learned I was autistic, I could start to recognise that the people who over the years had scolded, yelled, and made fun of me; those people were the ones in the wrong. I was lucky enough to be in a position where I could make changes in my life that accommodate my specific needs, which in turn has made it possible for me to pursue the things that I find meaningful I don't want a society where we make autistic people believe that they are broken because of small-minded, inconsiderate bigots. After they've fixed their hearts we can talk about "fixing" my brain
intothemild 2mo ago
I'm autistic myself. I don't want a "cure" but I would like to have something that could help me reduce some of the harder aspects of life. Right now I'm on anti anxiety drugs, which whilst mostly affective, have sided effects that kind of suck. I'm lucky my wife and daughter love me very much, and I've always been someone who wanted to push myself a little further to get outside or do new things.. mostly because my daughter is also autistic and I want to be a good example of "small steps" ... But it was so hard with no medication that I eventually had a full blown autistic burnout, where therapy, time off work, and eventually medication helped me get back to work. Yes I want society to be more accommodating to us, but that doesn't stop the multitude of micro-aggressions I suffer daily just trying to navigate life, relationships, work, etc. If something could help remove those, I'd be forever grateful. I do not however want the way my mind works to change. Keep the positive, remove or dull the negative.
- Scandiravian 2mo ago
  I'm 100% with you I am very lucky to be in a country where my workplace is required to provide "reasonable accomodations" for me. There's still a long way to go to actually address a lot of the problems that myself and other autistic people have to deal with on a daily basis The important point for me is that I can see what that world would look like and it doesn't depend on "fixing" me
  - intothemild 2mo ago
    Same. Norway here, and yeah whilst some work places will be happy to make larger accommodations, most will only do what they are forced too. Working as a SWE has helped me have more accommodating workplace conditions, it was really the last 6 years since work from home did I truly realise that was the only one change a company could give me that made the biggest difference. Whilst I can take meds to make things better for anxiety, I will never be able to take meds to understand subtext or subtle facial expressions. It can take me weeks to realise that someone meant the opposite. There's no meds that could fix that.... Or if there is. Wow! I'd take it.
    - 2mo ago
_DeadFred_ 2mo ago
Anecdotally, I watched parents of autistic children become ghosts/shells of who they were. It seemed like much higher divorce rates, and towards the kids reaching highschool just single, burnt out mothers barely holding things together with no social life and their world reduced to just their kid(s). The cure shouldn't just be up to the kids, but to the invisible caregivers who give up way more than average parents.
- Scandiravian 2mo ago
  I think that's a false dichotomy. The choice is not between putting it all on "invisible caretakers" and forcing a treatment on a child without consent; a treatment that will affect them the rest of their life Here is a list of things that could also be done: - Offer better protection to parents of autistic children in relation to work - Stop trying to "normalise" autistic children in the school system, which leads to severe stress in the children - Provide after-school activities and safe-spaces for autistic children to process and decompress Anecdotally I have yet to meet any parents of autistic people who fit the narrative you provide. I have however met plenty of parents of neurotypical children who do
  - _DeadFred_ 2mo ago
    The things you list could have been done already. They aren't going to happen. They all require too much money for the modern world to choose them.
- pibaker 2mo ago
  The idea that children should be the ones to receive "treatment" for their parents' disorder is the more ghoulish thing I have heard in a while. Not only that, but to take away the children's ability to decide too. If a religious parent becomes sad and divorced because his child came out as gay, should conversion therapy be prescribed just so the parent can stay happily married?
  - munksbeer 2mo ago
    Father of an autistic child here. If I could "cure" his negative symptoms with medication, I'd choose it in a blink. Caveat being, I would have to see how it impacted the rest of his personality.

f6v 2mo ago

> If it was possible to fully trust that a hypothetical "cure" would only be used in these severe cases Isn’t it like the Ozempic? Some take it, some don’t.

applfanboysbgon 2mo ago
They have a valid concern. Unlike obesity, people with anything regarded as an intellectual disability are liable to have other people attempting to make decisions on their behalf, denying them agency over their own treatment, and legal systems will often enforce this denial of agency.

dns_snek 2mo ago

I see this sentiment often, but only when it comes to autism. How is this different from other disorders, disabilities, illnesses? You could make the exact same arguments for blindness. Every day is challenging, difficulties are mostly a consequence of how we've structured society, it's other people who should accommodate those who have different needs, etc. This narrative seems to originate from, and is perpetuated within online autism communities. I think it's great that people feel content with the way they are but I don't understand the animosity towards a mere suggestion that a cure should exist. I'm familiar with the history behind it and I'm on high alert when someone ventures into eugenics, however I firmly believe that we should be looking for a cure, just like we do for every other illness and disorder.

jimnotgym 2mo ago
Because many autistic people have superpowers in some areas, like systems thinking, thinking outside the box and maybe suprisingly reading people. If you had a superpower, but it came with a curse, that you couldn't always get to work on time, would you trade it in for a normal life? On the other hand, i don't see why a company wouldn't accommodate someone's minor quirks to get access to a superpower.
- dns_snek 2mo ago
  I'm well aware and I don't have a problem with you or anyone else living life the way you want. This doesn't explain animosity towards treatment/cure research.
  - jimnotgym 2mo ago
    Does it not? When you 'cure' the lateness you lose the superpower too. Now you have another boring normie doing a workmanlike job. I think the reason for the animosity is the assumption that it is it a disease or disorder in the first place. It presumes that rather than being different, it is wrong. Perhaps what is wrong, is neurotypical people insisting that the more gifted people have to be bent and twisted and forced to conform to the world as they want it. Perhaps because their boring and unimaginative minds can't stand the idea that someone else could lead a different life to them. Or, and have heard this, they are annoyed that the talented person with different needs gets to come in late some days... and they feel they are missing out themselves on a lie-in.
    - dns_snek 2mo ago
      No it doesn't explain the animosity because nobody is forcing you to take the cure, but there are people who desperately want a cure.
      - jimnotgym 2mo ago
        Are they desperate for the cure, because they are forced to work with people can't accept them for who they are? Because they are exhausted from years of masking, because you can't succeed unless you fit in? Do they desperately want the 'cure'? Or do they want the problem of fitting in to a normie world to go away?

saidnooneever 2mo ago

i liken it to ADHD medicine. if you give it early in life then people often end up using it and benefitting from it. Later life diagnoses see people not take the medicine because their condition has become their person and changing that feels like it changes them too much from themselves. Ultimately its all about being able to manage your life. If you run into troubles due to some condition it can cause to want a drug for it, but if you can manage often it can feels wrong to take it.

dns_snek 2mo ago
> Later life diagnoses see people not take the medicine because their condition has become their person and changing that feels like it changes them too much from themselves. I also see this sentiment frequently but as someone who was diagnosed later in life I couldn't relate to it less. The scattered brain has lead me down some interesting (and fruitful) paths I wouldn't have explored otherwise, but 95% of the time it just distracts me from goals that are actually meaningful to me in the long term, and adds social friction and conflict. I'd like to see someone study why there's such a stark difference in how people perceive it. Stimulant medication, good sleep, physical activity all help somewhat but they just take it down a notch. There are some aspects where they help a lot and others where they barely make a difference.

drcongo 2mo ago

The flip side - I don't think there's a single upside to the ASD traits I have, I don't like myself, and I would absolutely love to know what it feels like to not have ASD.

ssl-3 2mo ago
I think it'd be neat to be able to switch it off temporarily. One of my greatest strengths is diving deeply into unfamiliar technical rabbit holes that relate to my own innate areas interest, and get useful results quickly. This is a quality that separates me from most others and I enjoy doing this when the opportunity arises. But I can't necessarily turn it off; I don't always get a choice about whether I'm going to be diving into a thing or not. Overall, I think this has has been a valuable set of traits. But my greatest weaknesses are...just about everything else. For stuff that is outside of the subset of things that are innately interesting, I often find them difficult to grasp. It can be challenging to get my head around some stuff that many others can do without much effort at all. I can usually get there eventually; it just always takes more work for me than it would for a more-typical person, and I don't necessarily learn them in the same ways that a normal person might. It'd be fun to see how the world would work for me if these qualities were averaged out, but long-term it would mean that many aspects of my life would have to be shaped very differently. Therefore, I would not want it to be permanent without first spending some time visiting the other side of the fence.
Scandiravian 2mo ago
OP here First of all, I'm genuinely sorry to hear that you're struggling with you self-worth because of your symptoms I don't know you or your story, so I'm not going to assume that my experience is comparable to yours. This is why I'm conflicted about whether I would want a "cure" My hesitancy against wanting one is based solely on my own life experience. I was diagnosed as an adult and I had struggled with my self-worth and had been chronically depressed since I was a child. If someone had offered me a "cure" so I could fit in at that point, I'd probably have taken it The thing is that after I learned I was autistic, I could start to recognise that the people who over the years had scolded, yelled, and made fun of me; those people were the ones in the wrong. I was lucky enough to be in a position where I could make changes in my life that accommodate my specific needs, which in turn has made it possible for me to pursue the things that I find meaningful I don't want a society where we make autistic people believe that they are broken because of small-minded, inconsiderate bigots. After they've fixed their hearts we can talk about "fixing" my brain

intothemild 2mo ago

I'm autistic myself. I don't want a "cure" but I would like to have something that could help me reduce some of the harder aspects of life. Right now I'm on anti anxiety drugs, which whilst mostly affective, have sided effects that kind of suck. I'm lucky my wife and daughter love me very much, and I've always been someone who wanted to push myself a little further to get outside or do new things.. mostly because my daughter is also autistic and I want to be a good example of "small steps" ... But it was so hard with no medication that I eventually had a full blown autistic burnout, where therapy, time off work, and eventually medication helped me get back to work. Yes I want society to be more accommodating to us, but that doesn't stop the multitude of micro-aggressions I suffer daily just trying to navigate life, relationships, work, etc. If something could help remove those, I'd be forever grateful. I do not however want the way my mind works to change. Keep the positive, remove or dull the negative.

Scandiravian 2mo ago
I'm 100% with you I am very lucky to be in a country where my workplace is required to provide "reasonable accomodations" for me. There's still a long way to go to actually address a lot of the problems that myself and other autistic people have to deal with on a daily basis The important point for me is that I can see what that world would look like and it doesn't depend on "fixing" me
- intothemild 2mo ago
  Same. Norway here, and yeah whilst some work places will be happy to make larger accommodations, most will only do what they are forced too. Working as a SWE has helped me have more accommodating workplace conditions, it was really the last 6 years since work from home did I truly realise that was the only one change a company could give me that made the biggest difference. Whilst I can take meds to make things better for anxiety, I will never be able to take meds to understand subtext or subtle facial expressions. It can take me weeks to realise that someone meant the opposite. There's no meds that could fix that.... Or if there is. Wow! I'd take it.
  - 2mo ago

_DeadFred_ 2mo ago

Anecdotally, I watched parents of autistic children become ghosts/shells of who they were. It seemed like much higher divorce rates, and towards the kids reaching highschool just single, burnt out mothers barely holding things together with no social life and their world reduced to just their kid(s). The cure shouldn't just be up to the kids, but to the invisible caregivers who give up way more than average parents.

Scandiravian 2mo ago
I think that's a false dichotomy. The choice is not between putting it all on "invisible caretakers" and forcing a treatment on a child without consent; a treatment that will affect them the rest of their life Here is a list of things that could also be done: - Offer better protection to parents of autistic children in relation to work - Stop trying to "normalise" autistic children in the school system, which leads to severe stress in the children - Provide after-school activities and safe-spaces for autistic children to process and decompress Anecdotally I have yet to meet any parents of autistic people who fit the narrative you provide. I have however met plenty of parents of neurotypical children who do
- _DeadFred_ 2mo ago
  The things you list could have been done already. They aren't going to happen. They all require too much money for the modern world to choose them.
pibaker 2mo ago
The idea that children should be the ones to receive "treatment" for their parents' disorder is the more ghoulish thing I have heard in a while. Not only that, but to take away the children's ability to decide too. If a religious parent becomes sad and divorced because his child came out as gay, should conversion therapy be prescribed just so the parent can stay happily married?
- munksbeer 2mo ago
  Father of an autistic child here. If I could "cure" his negative symptoms with medication, I'd choose it in a blink. Caveat being, I would have to see how it impacted the rest of his personality.