Drug reverses autism-like brain changes in adult mice within hours
uclahealth.org
uclahealth.org
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
Isn’t it like the Ozempic? Some take it, some don’t.
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.
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 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.
Some people will want a cure regardless.
And we'll never have a society that's perfectly inclusive and understanding enough of all disorders, so it's just wishful thinking.
It reminds me of the idea that 'curing' people's homosexuality would make them happier. Turns out it is not possible, but in the civilised world we made things so much better for them by just not being shitty and oppressive.
You can discuss the philosophy of these decisions all day long but at the end of the day, you don't get to tell other people what to do. You're no different from the "pro-life" crowd who want to ban abortion based on simplistic and idealistic view of the world.
When you berate people who are asking for more treatment options, you're not just expressing your preference, you're also trying to control theirs. My patience on this has truly run out.
You've shown little to no interest in actually understanding why myself and others have expressed concerns what a "cure" would mean for those of us with a diagnosis, including a complete disregard for the historical precedent of how people with perceived "mental disabilities" have been treated
You've run out of patience because your stance has been that we're wrong and you're right, so you need to set us straight. That's generally not a path to a fruitful conversation
The unhappiness caused by ADHD and Autisms friction against the modem world has a cure already. Make a more accommodating world. My ADHD/Autism does not make me unhappy. Being in trouble because I work differently to everyone else does make me unhappy though, and that could change. I have lost count of the conversations like 'you are doing brilliant work, 20 years we have been looking for a solution to that, and you stopped up all night one night and fixed it. Amazing, but I can't have you coming in at 9.15, everyone else will think it's ok'. Change that to, 'That's Amazing work, a gamechanger, and since you worked so late, take it easy today, do you need to go home?', and all of a sudden I'm not ill anymore. It is not a disease, just a difference. Do I wish I didn't get upset by things people find normal, yes. Would I have surgery to 'fix' it, no. That is not a path to contentment.
History about autistic people or mentally ill people in general says otherwise.
> I'm familiar with the history behind it and I'm on high alert when someone ventures into eugenics
It's like someone saying "but I would personally not gamble myself into bankruptcy" when his pro sports gambling legalization stance is challenged. Or like saying it's safe to keep a loaded gun in a house where his mentally unstable cousin lives just because he personally is responsible with firearms.
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 see this sentiment often, but only when it comes to autism. How is this different from other disorders, disabilities, illnesses?
We have a comparative question involving a list of things, here.
Let's unroll the list and make separate comparative questions instead:
autism. How is this different from other disorders?
autism. How is this different from other disabilities?
autism. How is this different from other illnesses?
I've expanded my thoughts here if you wish to have a more productive discussion: https://news.ycombinator.com/item?id=49145950
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.
Does being autistic decrease your chances of finding a partner? That feels like something that should be substantiated, because although it feels logical that a deficiency in communication would lead to this, in reality I just see autistic people seeking each other explicitly or even subconsciously by being inclined toward their own traits.
I think a stronger argument is that there are more severe instances of autism that are disabling while providing few benefits of 'mild' or 'normal' autism.
Yes, absolutely. A tiny minority of people with autism are married.
The majority are unemployed.
Suicidal ideation and attempts are something like 1 in 3 (!!)
I think brushing all of this off with "it's not you, it's the society" is a dismissive and harmful attitude, even if it might turn out to be "technically correct".
Any statistics done on the subset of autistic people with a diagnosis would therefore be skewed towards the mean of the subset of the general population who are in contact with the psychiatric system
There's a huge number of undiagnosed - estimates range between 90%-98% of people who would fit the criteria for ASD remain undiagnosed. These people remain undiagnosed because they generally live normal lives with jobs, wives, husbands, children, pets, and so on, which provides a support system to help them with the challenges they face
The group of undiagnosed autistic people are however much more likely to be underemployed, i.e. they employed in a much lower position than their education and experience would generally suggest. This is due to the systemic issues they face caused by a lack of accommodations which naturally increases the risk of them having a mental health crisis that puts them in contact with the psychiatric system
Something, something, kettle, something, something, pot
We do our best, and I hope we can help him learn the correct coping mechanisms. But reading some of the posts here make me quite enraged. He has a medical condition. It is called ASD. Would I medicate him if it meant he had a better chance of living a happier life? In a blink.
I can however speak to what it's like being autistic and what would have helped me growing up - and it's wasn't medicine
I had my share of meltdowns and they were pretty much exclusively caused by being forced to fit into a rigid school system where my "weirdness" was punished by both teachers and my classmates
What I needed was teachers who had been educated in supporting neurodivergent children, a safe space where I could have gone when I needed to decompress, an academic schedule that was geared towards my needs, and counselling to help me navigate a society that is designed by and for neurotypical people
That my brain is wired differently than it is in a neurotypical person is not a medical condition
What enrages me is when I'm treated as if I'm somehow broken and need fixing. I'm sick and tired of being discriminated against and I'm even more tired of people arguing that it's somehow a super power
My needs and preferences might be different from other people, but I'm still just a person and that's what I'd like to be treated as
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
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
Yes, actually we should have treatments and cures available for anyone who wants them, for anything inside and outside the DSM.
you put words in my mouth by suggesting i am against treatments, or cures, but that’s not really your point.
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.
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
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?
Is the rate of suicide higher among autistic people because they are autistic or because they face discrimination due to the way we've structured society?
One of the reasons why we've seen a large increase in people getting diagnosed with autism in recent years is that society, work environments especially, have become much more demanding. Someone who, 30 years ago, would have been able to function at a high level at home and at work would like struggle much more today
This is not the only reason for the increase in diagnoses, but it's definitely a part of it
The question is then; are these increased demands an inevitability, a law of nature if you will, or is it something we can choose to change?
This is what I mean when I say that society get the mental disorders it creates
There is also a significant higher rate of suicide for the homosexual part of the population compared to the heterosexual part, so again I have to ask: should we "cure" homosexuality?
I have said throughout the thread that I'm conflicted about a "cure". I do believe it could help some people immensely, but for many more people what would help more is a kinder and more compassionate society, where the default assumption isn't that if autistic people don't want to burn out, then they're the ones who'll have to be "fixed"
Homosexuality is also on a spectrum, and at no point does someone on that spectrum stop functioning in society because they’re gay. Being gay is only an issue because of those around them, there is nothing to “cure”.
The same cannot be said about being high on the ASD scale. Someone high on this scale will have trouble staying alive without a support system, and medicine could be a component of that system.
As I said in my original post that spawned this thread (and I think in one or two other posts as well), people who are ASD-3 is a case where I would hope we could get better treatment options, but I'm worried about the implications such a "cure" would have for the ASD-1 part of the population
My question about whether we should cure homosexuality is naturally preposterous, exactly because the issues they face are exclusively caused by their surroundings
When the poster I responded cited a high suicide rate among autistic people as support for why a "cure" should be pursued as well as equating it to other "disorders/diseases/illness" in general, I wanted to highlight the absurdity of such a line of reasoning
My main point is that shit is complicated. There are people who need and deserve better treatment options, but ignoring how people who have not conformed to societal expectations have been treated throughout history (and in many cases continues to be treated) is foolish and dangerous
You’re right that it could have implications for ASD-1, and I sympathize, but those higher on the spectrum are also the least able to advocate for themselves. Having another medical option to support them is a good thing.
In a society where the nuclear family is seen as the highest ideal and the natural state of being, anyone who is not cis and straight will be seen as someone that needs to be changed, which is why homosexuality was considered a disorder
When you have a society where capital is king and a lot of people genuinely believe that your personal productivity is a measure of your worth, anyone who do not function in the resulting "hussle-culture" will be seen as someone that will need to be changed
Yes, being autistic and homosexual are two completely different things, but treating a social construct, such as a disorder classification as natural law is just as idiotic now as it was in 1970
Whether or not people with ASD-1 are more capable of advocating for themselves is completely irrelevant if our concerns can be dismissed outright by anyone claiming to speak for ASD-3
It shows a complete disregard for the discrimination that is already occurring today which affects every verbal autistic person I know, myself included
It's a way to essentially refuse to deal with considerations such as how many people with an ASD-1 diagnosis should we as a society accept being treated, not because they actually want the treatment for themselves, but because they're subjected to social control
I believe where we’re drifting apart is that ASD *not* just a social construct. Higher levels of ASD are demonstrably more difficult or even impossible to deal without a support system.
This is not the case with homosexuality, where society simply has to stop marginalizing them for liking who they like . There is no issue with being “too gay” that society didn’t create.
Someone at the high-end of the ASD spectrum simply cannot thrive without support.
I’m very much in support of those with ASD1, and do not wish to “fix” them or even think there’s something fix in the first place. However, they’re also the most able to advocate for themselves. We can’t forget the ones that truly need help, and medicine can be one avenue for that.
If this does not at the minimum give pause to consider how societies historically have acted towards people who have not conformed, then I don't think you actually understand the discrimination most people with asd-1 face on a daily basis
You can argue all you want that it's good for people with asd-3. I have agreed with that at every step. Using it to silence genuine concerns from people with asd-1 is kind of proving my point, that our concerns will not be listened to and we could end in a situation where people are pressured to treatment through negative social control
If you believe advocating for ASD3 means silencing ASD1 then we'll just agree to disagree, but I do appreciate the conversation.
Since people with asd-3 can't speak for themselves, others are allowed to speak for them and as a result everyone is essentially allowed to ignore the concerns of people with asd-1 as long as they hide behind representing asd-3
I've argued for asd-3 throughout, so if you respond with a disagreement, the only part you're essentially disagreeing with is my expression of concern about how it will impact asd-1. Pitting me as opposed to treatment of asd-3 is a complete and utter strawman
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.
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.
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'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.
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 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
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.
People look at me weird when I say that I have never had it as good as I did during COVID lockdowns, but it was amazing that my entire world was my apartment and I didn't have to deal with anything besides what was within those four walls
I agree with your distinction/example about meds. If there was something that could improve the things I struggle with such as not being able to recognise faces, interpret facial expressions, etc then I'd be very happy to take it
Unfortunately I think these things are intrinsically interconnected with the parts of being autistic I love
Anyway - thanks so much for sharing your perspective and experience. I really appreciated hearing about it
The cure shouldn't just be up to the kids, but to the invisible caregivers who give up way more than average parents.
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
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?
Caveat being, I would have to see how it impacted the rest of his personality.
We also have parents who believe in "junk science" like "conversion therapy" or "vaccine avoidance".
It's not even the slightest of stretches to imagine that a child with a mild case of high-functioning autism might still get this drug because their parents don't believe in such silly terms as "neurodivergence", or worse they see it as a problem that needs fixing.
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.
(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 :/)
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.