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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'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

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.

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)

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

> 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.

I completely agree.

And I've never been on antidepressants but I take Concerta (stimulant) for ADHD and I've heard many say that they feel like zombies on stimulants.

I've never felt like a zombie, it just takes the "edge" off by making it easier to get started and get things done, makes me slightly better organized, etc.

I think it sucks that some people don't respond well to medication. It's also a given that the freedom to decide on what to do with your body is an enshrined, essential human right.

The problem I have is this: Just like I don't tell them what to do, I expect that they wouldn't berate me for taking the treatment, and for asking for better ones.. yet they do.

When I cheer on the research for a cure, because I want it, for myself, I always get antagonized by the "superpower" crowd, get interrogated under the presumption I'm the second coming of Hitler, get told that I don't really want it, it's just the society making me say that (1. not true; 2. Gee, thanks)... It just never ends and I'm officially out of patience entertaining it. The other responses to my comments in this thread are a good example of that

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.
> 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 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.

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.
Fortunately most of their criticism falls on deaf ears.
That's interesting, I didn't know about that!
OP here

The main issue I see with this line of thinking is that there is an underlying/implicit assumption that there is something wrong with being autistic

Society has the mental disorders it creates, i.e. autism is only viewed as a disorder because it doesn't fit into the societal structures we have built

Not long ago being gay was considered a mental disorder - should we try to find a cure for homosexuality?

Most neurotypical people who I see argue for "a cure" want one because they don't want a society where there is room for people who experience the world in a different way and therefore have different views than themselves

Said more plainly, they're bigots and they have no qualms berating, scolding, and making fun of an autistic person until said person believes they are actually in need of fixing. If someone who faces discrimination and bullying every day asked to be "cured", are they actually making an informed choice or are they being forced by society?

There is nothing wrong with being autistic and it shouldn't be necessary for myself and other autistic people to justify our existence based on things like economic output

As I pointed out in my original post, I am conflicted about the potential for a "cure". For asd-3 it could potentially be revolutionary in terms of quality of life, but with the discrimination I myself experience and what I hear from other autistic people, not to mention the political situation around the world, I do not trust that this will actually be used to help us. It would be used to control us because other people somehow believe we're broken

There's nothing wrong with being autistic, that's not my assumption and I don't want to "fix" anyone. You're preaching to the choir about the bigots and you're right to be skeptical. I'd never trust anyone who campaigns against autism the way RFK Jr. did (for example). He's clearly just using autism as a political pawn and whatever their underlying motivation might be, I know they that their real intentions are impure so any research they touch is automatically tainted.

Hopefully that clarifies my position on this?

On the flip side I strongly support real scientific research into the treatments of all causes of human suffering, one of them being autism.

To put it simply before diving deeper: Regardless of everything else, I support research into these treatments/cures because there are people who desperately want them, and because their lives would be saved/drastically improved if they had them.

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A plurality of people with autism experience crisis-level distress. It's been a while since I looked at the research, but from what I remember, the rate of suicidal ideation is worse for people who have a lower level of impairment/support needs. The rate of suicide among people with autism is something like ~5x higher and in some subgroups (lower support needs, comorbid disorders) I believe it's even higher than that - closer to ~10x.

That is why I want there to be a cure for autism, and ADHD, and every ailment that exists. Without it many people experience so much suffering that they have little choice but to kill themselves.

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I have ADHD so these sorts of discussions affect me directly. People frequently call it a superpower and talk about how great it is. Public discussion is inherently biased towards perspectives of those who are least affected since they participate more and communicate clearly.

The net effect is that people who suffer the least have the loudest voices, they simultaneously reject the idea of treatment without consideration for those who have it worse, and they tend to antagonize people who are worse off for merely suggesting that the disorder is something that anyone would want to get rid of.

I hope you can see how that's problematic?

Spot on.

The same arguments pop up when new therapies are unveiled for various sightedness disorders, hearing impairment, etc.

How _dare_ you impugn upon my identity that has been reinforced through my upbringing constantly? Etc.

treating the dsm like a checklist of cures to complete sounds a bit like what might go in the dsm
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.

> 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.
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.
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.

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

> I was diagnosed as an adult and I had struggled with my self-worth and had been chronically depressed since I was a child.

I've only recently been diagnosed, so I'm possibly still in the phase where I'm reframing my sense of self from "a man with depression" to "a man with ASD traits". I'd never considered that I might have ASD, but once my therapist started pointing out the patterns it seemed completely obvious, and honestly a bit of a relief, so I'm hopeful that given a little more time my attitude might be much closer to yours. Thank you for your reply, it's really nice to hear a similar story to mine with a much nicer resolution.

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.

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

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.
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?

No. Parents are often the least informed and least capable of making proper medical decisions for their children.
> 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.
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.

> 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?
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.
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 :/)

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’ve always just viewed autism and the spectrum as the next step in our evolution. It’s not neurotypical vs spectrum anymore. I just think less and less people are neuro “typical”
so, like a vacine against autism, rather than the impossibility of it bieng caused by one? instantly?