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
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.
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.
> How is this different from other disorders, disabilities, illnesses?
Not diagnosed autistic myself, but I buy into the argument that a lot of “(mental) disorders” make one allergic to the amount of subtle and less subtle daily dose of interrelational violence. Plenty of drugs exist to numb organisms.
I don’t know if you’ve ever been on antidepressants or antipsychotics, but one who has might relate that that kind of “cure” means to turn you into a “functioning zombie”. One may prefer the suffering and ability to fight and point out violent behavior rather than a medically-induced zoning out.
Our societies are far from “healthy”. What is “disordered” is how we treat ourselves and others. It’s up to each one individually to decide how much they want to be part of this “normal” or whether they prefer to be “disordered” even if it comes with certain limitations.
”It Is No Measure of Health To Be Well-Adjusted to a Profoundly Sick Society” (Krishnamurti)
> How is this different from other disorders, disabilities, illnesses?
Part of the confusion here is that autism isn't straightforwardly a disability. A plurality of people with autism are ASD-1, which is the kind requiring the least support needs while, purely empirically speaking, conferring lots of well-documented benefits. The sort of elephant in the room in these conversations is that there are lots of replicable studies which show that autistic people outperform non-autistic people in a variety of areas. The idea of attempting to engineer the removal of a class of people from society-- people with unique strengths which are necessary for the functioning of that society-- has consequences that are significantly less well-understood than proponents of this idea make it out to be.
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.
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.
> 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.
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.
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.
Rapamycin - how strange. The Mammalian Target of Rapamycin (mTOR) gene/protein regulates cell growth in some not well understood way.
Maternal inflammation also aligns with autistic people being extra sensitive to negative feedback. Maybe if you are born in a world of disease you are supposed to be extra cautious of everything.
I have ASD Level 1, and I definitely don't want to be "cured." I feel like autism has basically given me significantly stronger reasoning, pattern recognition, and systemizing abilities in exchange for being socially a bit weird and awkward and eccentric. I recognize that this is the perspective of someone who is high-functioning but I strongly enjoy having autism.
> The effects of rapamycin are temporary, and repeated dosing loses efficacy, making rapamycin, itself, an unlikely candidate as a broadly-used treatment.
Bryan Johnson took it for 5 years in an attempt to slow aging. He eventually discontinued because it was causing an increase in skin infections (as you'd expect from an immune system suppressant), but cycling could mitigate that.
This is interesting, it may be a type of thing I'd be curious about at some point. I don't think it's possible to undo the general way my brain is organized (badly), but I'd be curious to see if I'd get any benefit anyway.
(I seem to be a rare type of autistic, because while I can reliably find all three other major types, it has been very difficult for me to find more of my own :/)
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
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.
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.
> How is this different from other disorders, disabilities, illnesses?
Not diagnosed autistic myself, but I buy into the argument that a lot of “(mental) disorders” make one allergic to the amount of subtle and less subtle daily dose of interrelational violence. Plenty of drugs exist to numb organisms.
I don’t know if you’ve ever been on antidepressants or antipsychotics, but one who has might relate that that kind of “cure” means to turn you into a “functioning zombie”. One may prefer the suffering and ability to fight and point out violent behavior rather than a medically-induced zoning out.
Our societies are far from “healthy”. What is “disordered” is how we treat ourselves and others. It’s up to each one individually to decide how much they want to be part of this “normal” or whether they prefer to be “disordered” even if it comes with certain limitations.
”It Is No Measure of Health To Be Well-Adjusted to a Profoundly Sick Society” (Krishnamurti)
> How is this different from other disorders, disabilities, illnesses?
Part of the confusion here is that autism isn't straightforwardly a disability. A plurality of people with autism are ASD-1, which is the kind requiring the least support needs while, purely empirically speaking, conferring lots of well-documented benefits. The sort of elephant in the room in these conversations is that there are lots of replicable studies which show that autistic people outperform non-autistic people in a variety of areas. The idea of attempting to engineer the removal of a class of people from society-- people with unique strengths which are necessary for the functioning of that society-- has consequences that are significantly less well-understood than proponents of this idea make it out to be.
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.
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.
It isn't unique. Deaf people think that having your hearing cured is betraying the deaf community.
That's interesting, I didn't know about that!
> I see this sentiment often, but only when it comes to autism. How is this different from other disorders, disabilities, illnesses?
These are not equivalent, synonymous terms. I think that your premise might need some work.
There's plenty of people in the world who are healthy, autistic, and not disabled at all.
I know they're not synonymous, that's why I used all 3 and not just one.
That may be what was meant, but that's not how it was written.
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.
> 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.
> 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.
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.
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.
Rapamycin - how strange. The Mammalian Target of Rapamycin (mTOR) gene/protein regulates cell growth in some not well understood way.
Maternal inflammation also aligns with autistic people being extra sensitive to negative feedback. Maybe if you are born in a world of disease you are supposed to be extra cautious of everything.
I have ASD Level 1, and I definitely don't want to be "cured." I feel like autism has basically given me significantly stronger reasoning, pattern recognition, and systemizing abilities in exchange for being socially a bit weird and awkward and eccentric. I recognize that this is the perspective of someone who is high-functioning but I strongly enjoy having autism.
> The effects of rapamycin are temporary, and repeated dosing loses efficacy, making rapamycin, itself, an unlikely candidate as a broadly-used treatment.
Cycling is possible
Doesn't the "potential for toxicity from repeated doses" make this sort of doubtful?
Possibly, possibly not.
Bryan Johnson took it for 5 years in an attempt to slow aging. He eventually discontinued because it was causing an increase in skin infections (as you'd expect from an immune system suppressant), but cycling could mitigate that.
Regardless of side effects there is no reliable evidence that rapamycin slows aging in humans.
What the fuck is the point of this commemt? Like what are you even insinuating? Half the drugs in the world have dubious evidence. U bafoon
Would we have evidence even if it was true?
This is interesting, it may be a type of thing I'd be curious about at some point. I don't think it's possible to undo the general way my brain is organized (badly), but I'd be curious to see if I'd get any benefit anyway.
(I seem to be a rare type of autistic, because while I can reliably find all three other major types, it has been very difficult for me to find more of my own :/)
so, like a vacine against autism, rather than the impossibility of it bieng caused by one? instantly?
https://en.wikipedia.org/wiki/Flowers_for_Algernon
More like
https://en.wikipedia.org/wiki/Madness_and_Civilization