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Scandiravian 5 hours ago [-]
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
intothemild 1 hours 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.
dns_snek 3 hours 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.
47282847 51 minutes ago [-]
> 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)
See e.g. Hughes, K., Bellis, M. A., Hardcastle, K. A., Sethi, D., Butchart, A., Mikton, C., Jones, L., & Dunne, M. P. (2017). The effect of multiple adverse childhood experiences on health: A systematic review and meta-analysis. The Lancet Public Health, 2(8), e356–e366. https://doi.org/10.1016/S2468-2667(17)30118-4
thrownphone 15 minutes ago [-]
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cindyllm 46 minutes ago [-]
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stonyrubbish 1 hours ago [-]
> 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.
dns_snek 43 minutes ago [-]
I agree up until this point:
> 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'll be the first to pick up my pitchforks at anyone who suggests non-consensual treatments. My point is that trying to find a cure for something is different from trying to eradicate people from a gene pool.
In fact, I would assume that having an effective treatment/cure for autism would make it more widespread, not less. People who were cured of their ASD-related deficits would be far more likely to find a partner and have kids, and those kids would inherit genes which are responsible for ASD.
jimnotgym 2 hours 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 58 minutes 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.
inigyou 1 hours ago [-]
It isn't unique. Deaf people fight against research to cure hearing loss and fight against people having it cured, as they say it's betraying the deaf community.
dns_snek 58 minutes ago [-]
That's interesting, I didn't know about that!
ssl-3 2 hours ago [-]
> 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.
dns_snek 1 hours ago [-]
I know they're not synonymous, that's why I used all 3 and not just one.
ssl-3 52 minutes ago [-]
That may be what was meant, but that's not how it was written.
dns_snek 37 minutes ago [-]
It was written fine. ASD is a disorder which was the first item on that list. You could make the same type of argument about disabilities (e.g. deafness) and someone pointed out that people make the same arguments in the deaf community too.
ssl-3 20 minutes ago [-]
Words mean things.
dns_snek 16 minutes ago [-]
And my words in no way implied that those were equal, or that autism was necessarily an illness or a disability. People often make those arguments and I'm not one of them. You're attacking a straw man.
catchnear4321 32 minutes ago [-]
treating the dsm like a checklist of cures to complete sounds a bit like what might go in the dsm
dns_snek 23 minutes ago [-]
If you try to reformulate that snarky one-liner that into a good faith argument you'll see how ridiculous it sounds.
Yes, actually we should have treatments and cures available for anyone who wants them, for anything inside and outside the DSM.
saidnooneever 3 hours 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 2 hours 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.
f6v 3 hours 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 3 hours 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.
drcongo 2 hours 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 29 minutes 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.
stonyrubbish 2 hours ago [-]
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.
inigyou 1 hours ago [-]
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.
galleywest200 11 hours ago [-]
> The effects of rapamycin are temporary, and repeated dosing loses efficacy, making rapamycin, itself, an unlikely candidate as a broadly-used treatment.
onesandofgrain 5 hours ago [-]
Cycling is possible
SoMomentary 4 hours ago [-]
Doesn't the "potential for toxicity from repeated doses" make this sort of doubtful?
RobotToaster 3 hours ago [-]
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.
nradov 1 hours ago [-]
Regardless of side effects there is no reliable evidence that rapamycin slows aging in humans.
inigyou 1 hours ago [-]
Would we have evidence even if it was true?
onesandofgrain 45 minutes ago [-]
What do you mean? Population control?
inigyou 8 minutes ago [-]
Has anyone done an experiment administering rapamycin to humans to see if it slows aging? Would that experiment pass an ethics committee?
onesandofgrain 45 minutes ago [-]
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
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 :/)
metalman 2 hours ago [-]
so, like a vacine against autism, rather than the impossibility of it bieng caused by one? instantly?
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
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.
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.
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)
See e.g. Hughes, K., Bellis, M. A., Hardcastle, K. A., Sethi, D., Butchart, A., Mikton, C., Jones, L., & Dunne, M. P. (2017). The effect of multiple adverse childhood experiences on health: A systematic review and meta-analysis. The Lancet Public Health, 2(8), e356–e366. https://doi.org/10.1016/S2468-2667(17)30118-4
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.
> 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'll be the first to pick up my pitchforks at anyone who suggests non-consensual treatments. My point is that trying to find a cure for something is different from trying to eradicate people from a gene pool.
In fact, I would assume that having an effective treatment/cure for autism would make it more widespread, not less. People who were cured of their ASD-related deficits would be far more likely to find a partner and have kids, and those kids would inherit genes which are responsible for ASD.
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.
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.
Yes, actually we should have treatments and cures available for anyone who wants them, for anything inside and outside the DSM.
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.
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.
Isn’t it like the Ozempic? Some take it, some don’t.
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.
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.
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.
https://en.wikipedia.org/wiki/Madness_and_Civilization
(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 :/)