Metabolism of autism reveals developmental origins
medicalxpress.com
medicalxpress.com
For decades it's been without explanation but recently Dr Blakely has described a bunch of cases where it was narrowed down to SERT transporter polymorphisms and inflammation.
Worth a watch for those interested in the weeds of this stuff: https://www.youtube.com/watch?v=cpDtuKV5CJs
I've got a pet hypothesis that differences in Serotonin metabolism (and receptor hypersensitivity) might play a role in why SSRIs aren't generally considered a first line treatment for ASD symptoms, https://www.pnas.org/doi/abs/10.1073/pnas.1112345109
So I think at-least for the tiny fraction of ASD patients with these rare SERT variants there's actually a chance that they are a major driver of the disorder. Regardless it provides a tantalizing look at some of the upstream pathways that could be involved more generally.
I think we're going to find the disorder is very heterogenous and there will be many different subtypes and pathways involved.
Better to read the paper instead of the pop journals. Most writers don't understand the issues fully and make mistakes, or sensationalize the discovery.
From the Discussion[1] section of the paper:
> These self-calming connections in metabolism failed to develop in ASD. The natural consequence of the loss of these metabolic safeguards to overexcitation is for children with ASD to seek sameness to avoid the anxiety produced by change91, and to be more sensitive to environmental changes across many sensory domains.
And a bit further on:
> In the current study, xanthine was the purine that gained the most stimulatory (+r) correlations in 5-year-olds with ASD. Xanthine is one of the end-products of eATP metabolism97. Xanthine is known to trigger a cascade of events that leads to mitochondrial network fragmentation, reactive oxygen species and reactive nitrogen species (ROS and RNS), eicosanoid (e.g., leukotriene, HETE, and prostaglandin) signaling, immune activation, anxiety-associated behaviors, and consolidates long-term aversive memories that make the animal hypersensitive to future environmental changes that warn of environmental danger, cause fear, and trigger anxiety in mice, and is elevated in the blood of adults with anxiety disorders98. Anxiety is a common but under-recognized problem in autism99.
Another really important observation:
> A major result of this research was that the developmental differences observed in ASD were not the result of an increase or decrease of one causal metabolite, or an isolated change in the gut-brain axis, or neuroendocrine, autonomic, cytokine, or immunologic circuits. Instead, it was the interconnectedness and developmental state of the metabolic network that underlies all these systems that was fundamentally changed.
In the last year, the All Brains Belong VT organization has been working on a collection of information they call "All The Things" [2], which lines up with the paper's observation that there is an underlying metabolic network at play. As a side note, All Brains Belong VT is a fantastic organization that focuses heavily on validation and support in a healthcare industry which often feels incredibly invalidating for individuals who have been reporting symptoms across a wide variety of siloed physician specialties.
[1]: https://www.nature.com/articles/s42003-024-06102-y#Sec25
- 467 measured metabolites (features)
- 136 males and 69 females = 205 (data points)
- "To minimize overfitting, only correlations with q values < 0.05 were tallied."
Then the predictive performance in Fig. 3 looks very promising with a 0.88 AUC score. However, according to the methods: "Classifiers of 4–7 metabolites were selected and tested for diagnostic accuracy using area under the receiver operator characteristic curve and random forest analysis."
Then, those AUC scores do not provide so much value since they first used the data to select the best features and then used the same data to fit the model on the best features.
It also looks a bit like the authors have thrown the kitchen sink at these 200 samples since I see R, GraphPad Prism, Python, CIRCOS, Cytoscape, and MetaboAnalyst being used.
And the statement "Fifty (50) random samples at each subsample size were taken to estimate the population statistics based on the central limit theorem." is a bit weird because the central limit theorem shows up throughout many analyses including confidence intervals.
So all in all I'm not 100% sure, but I am skeptical. Anyone here who knows more about "Metabolic network and hub-and-spoke analysis" or "network growth" analysis? Or why it is reasonable to use so many metrics instead of being more selective?
Eh, this doesn’t look to be a P-hacking attempt. Scientific exploration doesn’t always hit the hypothesis first model. Ideally this paper should be a source of future specific hypothesis and experiments. Though, IMHO, their implicit hypothesis is that metabolism is a core feature of ASD.
The points about the predictive power in fig 3 are interesting.
That's a strong statement, and one which can be checked by others. Anyone trying to replicate this yet?
They're investigating the use of a drug that they don't understand to treat a condition that they don't understand, through the lens of one model that variously competes with or incompletely conforms to a myriad of other models of the condition.
In order to what? Nebulously "manage" a complex neurological difference that will always defy reversion to anything else?
It sounds like they want something that they can prescribe, period. And it sounds like it has the potential to further complicate already difficult lives.
Type 1 Autism may serve a general human gene pool function in terms of edge-dripping a specific intelligence trait into it (low probability of reproduction, protecting general social skill in the pool, but adding a divergent pattern solving skill at the edges).
While autism is difficult, I'm not sure that solving for it in the context of industrial medicine is wise. We don't want to solve for Nicola Tesla, for example.
Type 2 and 3 Autism could be genetically unsuccessful attempts at Type 1 autism development, to spitball. Assuming they are actually related, in most cases. Such management theoretically could be helpful here, but I think that these people deserve a lot better than injected parasite medicine with a lot of side effects. Besides, try getting an autistic child used to regular injections.
Though a low-side effect oral or transdermal medication that would, say, specifically enhance energy support to the Autistic PFC with few side effects could be game changing. Likely for many more conditions than autism.
Inventing such a medication that doesn't lead to a worse baseline would be critical and perhaps unlikely.
Then again its possible that the unique pattern solving ability of the Autistic mind is related to the relative lack of energy supply to an increased volume of PFC neurons; and the subsequent failure of inhibition. Possibly accounting for increased environmental information perception, at least in-part. Which may in turn be mirrored in expanded cognition involved in pattern identification.
The ideal, which again I think is unlikely, would be a PRN medication that could "quiet" the autistic mind via providing more energy to the PFC; while having no withdrawal semi-permanent side effects.
You'd probably be shocked to figure out how often this happens - and it used to happen a lot more in no small part because we didn't have the tools we have today: MRIs and better microscopes and other tech has really helped our understanding of the body. We are still figuring out how exactly the body works, after all, to the point that we occasionally discover a new body part. Of course we are going to do things we don't understand. Yet.
This isn't limited to medicine, either.
Maybe they want something to prescribe. For a lot of diseases, that's better than nothing. For example, I have MS. They know more than they used to about MS, but most of my life they've not known enough. I have medicine that isn't a cure, but I'll take it. Modern medicines mean that modern folks with MS have a much better quality of life than folks that didn't have medications. I'm more likely to have mobility and things like that. I'll take it.
My ex was schizophrenic. Medicine gave them a life. They still couldn't work, but they weren't suffering as much either. Again, not a cure, but help.
Imperfect cures or medicines that treat the symptoms are so much better than no help at all. This is where a lot of medicine starts - treating a symptom, and by doing so learning a bit more about the disease or affliction.
https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_sy...
Neuroleptic-induced deficit syndrome (NIDS) is a psychopathological syndrome that develops in some patients who take high doses of an antipsychotic for an extended time... characterized by the same symptoms that constitute the negative symptoms of schizophrenia
So I could see why taking the meds were difficult.
If you told me I could take a pill to cure my autism but it would have the same symptoms as an antipsychotic, no thank you I wouldn't do it.
> In 2017, Naviaux and his team completed early clinical testing for suramin, the only drug approved in humans that can target ATP signaling and which is normally used to treat African sleeping sickness.
What's even the point of writing this? I found two papers, and the effects were so weak that it's hard to tell whether it even makes sense to pursue this further. Most results were not statistically significant, and the one that was did not come from a higher dosage.
But it's this sort of reporting that makes desperate parents give their children bleach enemas and horse dewormer.
However “prevention” talk is a whole separate issue and that one does give me eugenics vibes.
But what about the poor sods who have so much happening all the time that they don't get the chance to learn to speak, or read, and scream in terror continually at the unending sensory deluge they try to live through? If there was a way to prevent that kind of presentation of ASD I think everyone would be better off. I took "prevention" to be about prevention of the life restricting developments of the condition.
On the other hand, if "prevention" is about culling the gene pool, I'm dead set against that.
Well, you can be against it by raising autistic children yourself, it seems you're in a perfect position for that. Why people feel they have the right to demand that from others is beyond me.
IME such strong feelings don’t don’t stay relegated to your personal choices, they get reflected at a broader policy level.
People say “well it was your choice to have such broken people, we gave you a pill that would make that not possible. Therefore we las a society will not support them (you’ll hear rhetoric along the lines of “why should we spend my hard-earned tax dollars on social programs for autistic people, that’s a you problem, why people demand I pay for their choices is beyond me”)
Of course that’s when the government offers a “compassionate” final solution to the autist problem. Since autistic people can’t seem to stop reproducing despite the “cure”, we should sterilize them. Or we should make it mandatory because otherwise they are a drain. Then of course for the ones who are “too autistic” (I.e. who are nonverbal or who otherwise cannot be productive), we can euthanize them.
No thanks we have been down that road before as a society. It doesn’t end well.
They say it’s basically the holocaust because you’re exterminating deaf people by curing them. Do you support their views?
I looked up some info and I find the issue to be far more complicated than you've summarized. One thing I note is that 90% of deaf children are born to hearing parents. They are making a decision about implants for an infant based on a reality they want the infant to experience, but they wouldn't even know any alternative way of living. Why do they get to make the decision for the child? Deaf people live like the rest of us. They face struggles, yet they live full happy rich lives.
Devices like implants don't come without risks and drawbacks. For people used to deaf culture, they have to learn how to integrate into hearing society, which can be frustrating and also lead to ridicule, shame, and embarrassment. The devices can be broken and can be distracting and annoying. I can understand why many would not opt for them, and would advocate against them when there is a ready and willing culture to receive deaf people as they are.
Maybe some people choose these implants and that's what they want. That's fine. No one is stopping them from doing that.
But I don't exactly see why hearing people are deciding that they must "cure" their child's deafness. I read that people are calling it child abuse. See, that's something I can't get behind, and it's an admission that our society is abusive toward people with differences.
That's not a reason to genetically alter people so that they conform to the abusive society, it's a reason to change society so that it doesn't abuse people with differences.
So again, I'm not familiar with this debate, here is some info I looked up:
https://www.businessinsider.com/why-deaf-people-turn-down-co...
Because past some age, you can't meaningfully learn to use hearing for communication anymore. You can choose to lose hearing as an adult if you really want to. But only if you were given the opportunity to have it in the first place as a child.
>For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.
Here is some literature for you to learn more about autism, particularly how to communicate with nonverbal people: https://www.healthpolicypartnership.com/reimagining-communic...
There is a similar thing for deaf people. Or how screening for Down’s has changed the reality of raising a child with it.
It's one thing to be content with who you are, it's another to deliberately impose hardship on someone when it could be avoided.
But it’s not that I’m against it or wanting to forbid it. It’s that these are very tricky subjects with a lot of very hard moral issues that need careful consideration. In the end I believe it should be about letting people have a choice and to remember that people are human even if they are different. To not take away someone’s agency.
I don’t know if I believe it or not, but the notion of gut-brain axis seems to imply that a good diet should help a bit, right?
There are some legitimate people with a Registered Dietician credential who can work as part of a care team to treat medical conditions. But most of us don't need them either. We know what we're supposed to eat, we just don't do it.
this.
"morbid" is from the Latin root "morbus", meaning sickness.
Remarkably often I find my partner has a different understanding of English words from me - she was schooled in French and can communicate in Italian and Spanish, but is also fluent in English (though spoken with French mannerisms which seem odd to me as a native English speaker). We often find we descend into discussions of the most correct meaning of a word in English which has a Latin root. The dictionary agrees with her mostly but I have an occasional win.
I recently learned that we use triumph to mean victory, but triumph was originally the ceremonial parade after a military victory.
"Metabolism is the language that the brain, gut and immune system use to communicate, and autism occurs when the communication between these systems is changed"
So it's not unreasonable that for some people, dietary interventions can have some effect on this interplay between systems. Mostly a just a random "YMMV" shot in the dark at this point. But hopefully as this research advances, more targeted and predictable treatments will emerge.
Its appearance gives me pause. Common commercial wheat is very short in comparison.
I have a friend who can’t eat “common” wheat products from the grocery store, having been diagnosed with severe gluten intolerance, but can eat Sonoran White without symptoms.
You can follow the same exact recipe but substitute Sonoran White flour for standard flower, and they can eat the final product.
I have absolutely no research to support my stance here. But given gluten intolerance is, from my understanding, a microbiome disorder. And Sonoran White grows tall and requires less pesticide/herbicide/fungicide, while common commercial wheat grows low to the ground and the head of wheat sits stewing in a bath of herbicide/pesticide/fungicide - I suspect the difference between the two strains’ impact on the microbiome is less genetic and more environmental.
ADHD research is showing similar early correlation between a mothers’ diet and the rate of ADHD (particularly caffeine consumption). I have a similar belief here that ADHD correlates with caffeine consumption because caffeine is often consumed in liquids containing additives that disrupt the mother’s microbiome.
I strongly suspect that, over the next 100 years, we are going to find that we’ve been waging war on the human biome through food preservatives and environmental contaminants. And that many common chronic disorders/illnesses (including ADHD, Autism, weight gain, etc) in our generation are actually attributable to a disfunctioning microbiome.
I suspect you're very right, and I further suspect that there's already research proving this that has been shelved and hidden behind NDAs by the people profiting from this, just as with big tobacco and big oil and big agri etc.
Living at altitude is hard. People who are out of shape move away.
On the other hand, contaminants concentrating further down stream is a known phenomenon and we known we’ve inundated many places with hormone disrupting substances. It doesn’t seem all that complicated or far fetched.
Both could be factors, and I’m not aiming to be contrarian so much as investigate the possibilities a bit. It’s an interesting topic
All of those things have existed for ... ever
But I do not believe they were as common prior to the 1960s as they are in the 2020s.
Sort of like how a big part of the increase in cancer deaths are people living long enough to die of cancer.
Get enough beatings, you learn to hide the thing that gets you beat.
I'm not at all convinced it was less common back then, just more hidden.
And, for instance, ADHD probably isn't a disorder if you live a very simple life and do manual labor all day. No hyperactivity, no DMV appointments, and your life is decided for you. Remember, all the lines are drawn arbitrarily and something is labeled a disorder when it doesn't work with our (very strange) modern world.
Can't comment on autism though, and this is not directly about micro biome obviously.
Why?
I have ADHD bad but it virtually goes away while backpacking for reasons I described.
This is like reading that seatbelts cause head injuries.
The only food that is objectively bad for every single human is processed food. Gluten tends to be processed, so people who needlessly go gluten-free may be incorrectly attributing improvements to that.
Also: if you're not actually intolerant, there is a high chance you're eating gluten without knowing it. Treat yourself to fast food fries? How sure are you that gluten (crumbed chicken) wasn't fried in the oil?
The gut-brain link I'm aware of three major theories. Gut issues could be causing a disorder of the brain. A disorder of the brain could be causing disordered lifestyle habits (Diet, exercise) causing digestive issues. A disorder of the brain could directly impacting digestive function.
I will however say, I would treat claims about the gut-brain axis and autism with the utmost scepticism as disgraced doctor Andrew Wakefield, who popularised the link between the MMR vaccine and autism to personally financially benefit from an undisclosed patent on a measles vaccine using fraudulent research, was a gastroenterologist and later anti-vax influencer who ended up popularising the gut-brain link of autism particularly among those who distrust scientific institutions. He notably influenced Jenny McCarthy who became a noted alt-medicine momfluencer in the '00s/'10s pushing gluten-free and anti-vax. Which is to say, research on the gut-brain link is done quite a lot by legitimate scientific researchers, quacks, and frauds alike so you have to be discriminating.
Additionally there have been various scientific reviews of dietary interventions, gluten-free being one of the most researched, and the evidence hasn't been shown ANY dietary intervention or gut intervention like fecal transplants is a silver bullet.
This isn't to say that there isn't anything to the idea that some people we've diagnosed as autistic or believe they're autistic, cannot be helped by dietary interventions. I would dare speculate, that a significant portion of those called "autistic" could make autistic symptoms fall into the sub-clinical range through gut interventions (diet AND exercise), and that such people may even be clinically distinct from other people considered autistic other than through their similar behaviour.
I have a lot of food allergies and a restaurant in Maryland that specializes in restricted diets pointed some of the research out to me. You can find scores of families with ASD children who have found dietary interventions to be beneficial.
The studies I have seen talk about something called exorphins, it sounded like people with ASD's bodies treat gluten like an opiate.
There’s a long history of these claimed fixes. They follow popular trends that come and go. They’ve been attached to everything from eliminating dyes and food colorings to every possible alternate diet out there.
Placebo effect is a large part of it. People feel better when they feel like they have some control over their condition. They buy into the popular narrative and then they really do feel better, even if nothing has actually changed physically.
It’s also common for people with major medical diagnoses like Autism to start thinking that every one of their symptoms is attributable to Autism. Some of these people might have gluten intolerance as a separate issue, so going gluten free improves a number of issues for them. Instead of attributing the improvement to improving their gut problem, they assume they have treated their Autism.
But no amount of "don't eat bread" is going to help me understand faces or social cues. A good diet might help with self esteem, overall energy levels, and resilience to my symptoms (if I'm healthier, I shut down less). But that's it, it's not going to change the way I experience the world, just stretch my tolerance for it.
Not sure how certain you are of your autism diagnosis, and I'm still not even sure where the line of demarcation is, but it may actually be ADHD. Worth considering.
I didn’t really know whether to believe it, but the effect that minerals have on the human body seems to suggest that the right mineral should help a bit, right?
I really wonder why HN goes off the rails when these topics come up. Is it just a weak science education, combined with the relative accessibility (and acceptability) of health/fitness/exercise self experimentation? Though I also see gut microbiome discussions being shoehorned to any discussion in this space aswell.
I guess I just don't get it, probably the 'tism.
These fitness yahoos just won't stop.
I also want to take a moment to call out all the deadlifters. Virtually 100% of people I know that have done substantial deadlifting eg. over 300lbs (give or take), for extended periods of time (several months to years) has wound up with either stress injuries or traumatic injuries; often it's both.
Meanwhile the deadlift crowd will insist they are just idiots, doing the exercise wrong. The point was that many people have poor coordination and don't have teams to watch over them and correct mistakes. Even mentioning this will lead to mass ridicule from bros that will insist that heavy deadlifts can only make your body feel minty fresh.
I'm not actually anti-deadlift, btw. I personally saw big improvements in the early stages. These problems seem to occur when the body starts fighting you, and you still want to keep going. Variation can help.
Or you could just do vertical loading and/or more moderate exercise and don't worry about proving your worth.
> Well this is nonsense for starters - circular logic. Doctors won't diagnose autism in most cases before the age of eight. For the diagnosis to have happened before the age of five would imply that the case is profound in the first place.
It's not like they took the age 5 at random, it's literally what was used in the study
They’re talking about a possible pharmaceutical “fix” for autism in children under 5.
Seems a bit premature for just recently finding a metabolic difference in a cohort of children.
---
... Naviaux and his team completed early clinical testing for suramin. ... Now, the researchers hope that by revealing the specific ATP-related pathways that are altered in autism, their work will help scientists develop more drugs that target these pathways to manage the symptoms of ASD.
"Suramin is just one drug that targets the cell danger response," he said. "Now that we're closely interrogating how metabolism changes in ASD, we could be at the beginning of a drug renaissance that will create new options for treatment that never existed before."
---
This study [literally] brought to you by Pannex Therapeutics, Yuva Biosciences, Kuzani, and Paxmedica, MaraBio Systems, Inc and undoubtedly numerous other big pharma interests that were able to keep the study at arm's length enough to avoid disclosure requirements. [1]
[1] - https://www.nature.com/articles/s42003-024-06102-y#Sec36
I’ve already received several down votes from folks who seem to disagree with my concern.
For example, it is commonly stated that autistic people have communication deficits, but this is just a communication difference. We can see this because if a communication task is given to a group of only autistic people they perform comparably to when the same task is given to a group of allistic people. Problems only take place when the group is mixed with both autistic and allistic people being present. The keyword "double empathy problem" can be used to find more information about this. (https://doi.org/10.1177/1362361320919286)
As another example, allistic people tend to very harshly judge autistic people for extremely subtle cues that they are different. When allistic people are shown recordings of autistic people communicating and of allistic people doing similiar tasks they, within less than a second, judge the autistic people very harshly. This effect persists when controlling for the content of the communication. (https://doi.org/10.1038/srep40700) Of course, doing anything that actually warrants such a judgement in a context like that is impossible so this is a bias against autistic people. I think that this can be compared to implicit racial bias: it is something that most people need to learn to consciously identify and then not perpetuate and is not due to any faults with the victim.
Good resource on this: https://www.youtube.com/watch?v=A1AUdaH-EPM
There are higher support needs autistic people who need help with activities of daily living. In my opinion, though, in many cases this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs. In some cases this could also be caregivers unnecessarily pathologizing behavior and then convincing someone that they need more support than they really do, which I have seen in real life.
" this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs. "
This is a self-contradictory statement. But what do you think people are researching if not those intellectual disabilities -- why they occur and how they can be prevented.
The people who you are referring to as neurodiverse also face huge challenges. When everyone hates you just for being yourself and not hurting anyone, that is a huge challenge. This can threaten peoples ability to make a living. This can result in people having to live in abusive situations due to lack of financial — not practical — ability to live on their own. When you need to do stimming to feel internally at piece but most other people will perceive this as a threat, that is a challenge. When you need protection (e.g., headphones) from sensory input in the outside world, but the world does not allow this in some cases (for example a job may deem it to be "unprofessional") that is also a threat. Supports are needed in this case, and these supports are for the world to lighten up about allowing these things.
Also, there are, perhaps more challenging, problems that what you call "severely autistic" people face. We should also support these people. For these people, the supports could be similar as above (the world lightening up, perhaps about the requirement that everyone be productively employed) or they could be different (a medical treatment that increases intelligence). Such a medical treatment needs to be performed ONLY with the informed consent of the patient, to the degree that that is possible with the communication difficulties.
> This is a self-contradictory statement. But what do you think people are researching if not those intellectual disabilities -- why they occur and how they can be prevented.
I think that this type of research is unnecessarily lumping intellectual disabilities with the traits in what you call neurodiverse people. I am much more open to helping people with intellectual disabilities, to the extent that these people want that help, than I am to treatments that attempt to normalize neurodiverse people. The word "autism" refers to both groups, so research that is about "curing autism" is at least in part about normalizing neurodiverse people.
Of course I also agree that society needs to become more accepting and supportive of all types of people. To put it simply, we should not become a bioengineered dystopia. We can do two things at once though.
>I think that this type of research is unnecessarily lumping intellectual disabilities with the traits in what you call neurodiverse people.
This is an unfair and unsubstantiated view that you are projecting onto the researchers. I give benefit of the doubt that these professionals have a far better understanding of the science, sociology, and ethics of the topic than any of us. We need better understanding and improvement in all the areas right now.
If can be easy to say that we should simply explore all avenues of research, and in an ideal world this would be true, but we do not live in an ideal world. There are two concerns with this type of research:
- it has an opportunity cost of research that might be more effective (for example medical treatments that could help with sensory hypersensitivity under an informed consent model could be a good result, or research that helps us understand what, exactly, leads allistic people to hate autistic people so much so that we can improve communication in both directions)
- it creates new abilities for those who would do eugenicist harm, even if they are well-meaning
That's just like, your opinion, man.
If autism warrants needing help with daily living then it's a disorder by definition.
- society rejects the trait without good reason, so then someone needs help to deal with this rejection
- the trait leads to an inability to do something that the person wants to do, irrespective of any societal concerns
I am okay with calling the latter a disorder, but not the former. The traits that are recognized as part of autism (social incompatibilities, stimming, special interests, hyper or hyposensitivity — these are the DSM traits for autism rephrased more politely) are clearly in the former case. Traits that lead to being unable to function (such as an inability to feed one's self) are not on this list, but rather are characterized by intellectual disability.
> In my opinion, though, in many cases this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs.
Which does not imply "no true definition of autism can contain intellectual disability".
With ADHD, it's actually a little crazy to me that people consider it "harmless". There's a ton of tangible ways that it hurts relationships and goals. I can't even make dinner and tidy house; doesn't matter how much time I have.
I will say the medicine made me a little more robotic and took a bite out of my personality; but this was a small nibble compared to not being able to do almost anything comfortably, and the consequences of that.
It's really damaging to your personality to not be able to conversate with people and understand each other. It's really damaging to your personality to not be able to practice your hobbies with friends. I really don't feel like my "true" self, and see others able to effortlessly be that person.
could be considered, or did you get a diagnosis from a specialist? Self diagnosis is not reliable. If you don't have an official diagnosis you can't be certain you really have ADHD. There may be several differe tfactors relevant for YOU that make keto diet work for you. Same diet can be harmful for similar people who have ADHD.
Professional diagnosis is not reliable either. ADHD and autism are often misdiagnosed as one-another, especially in girls.
> If you don't have an official diagnosis you can't be certain you really have ADHD
A lot of the time, the mental health professional making the determination doesn't have specialty in ADHD/Autism. All they're doing is looking at symptoms and making their best guess. Which is exactly what people are doing when they make a self-determination. In many cases, people with high-functioning autism know more about autism than the people who are supposed to know. And it's not like the diagnoses can be validated when we're still figuring out what autism even is.
I learned about ADHD for six months until I first consulted an expert about the possibility of my having it. He was able to recognise symptoms in me that I hadn't noticed.
As the old joke goes, “what do you call the person who graduated last in their medical school class?”
One estimate [1] states that over 400,000 people die due to medical errors in the US every year.
It would be such an easy world of you could go to a doctor and get answers but it's not the world we live in unless it's common cold (and even then a lot of doctors can't be bothered and prescribe antibiotics just in case).
Proving that the source of mental disorders is the brain and not the gut (as it was believed in the distant past) is easy: 100% of patients show brain damage while a fraction of them have an abnormal gut
As an autistic person, no thanks. Let people be autistic.
There's no "autism" as a "disease" that causes those symptoms.
May no parents with autistic children ever read your comment.
I suggest you take a closer to the definition : https://en.m.wikipedia.org/wiki/Autism_spectrum
Autism is clearly a "spectrum" disorder that is not fully understood or categorized yet, which is exactly why we need this type of research to reach a conclusive, testable biological basis.
To portray severely afflicted people as simply "neurodiverse" and dismiss treatment options for them, is far more bigoted than the reverse.
In my view, it's mostly the environment provided that's at fault. E.g. social expectations. I think it's a good thing for there to be variance of the way people perceive the World.
I had a rough childhood, but I wouldn't have wanted someone to change who I am. I had a rough childhood because of the expected standards for how a person should behave or be socially.
Now as I am older, and more confident, successful and have proven that given good environment I can do amazing, I understand how ridiculous people are being with their social requirements. None of it is needed.
Also I find it quite funny how people treat labels in psychiatry as some sort of gospel or an actual thing.
It's not a disease, but in this society it is a disability, and there's a stigma and lack of understanding around autism in general.
What we can do today to make life better for autistic people everywhere is to spread awareness and acceptance of autism. Not talk about curing and preventing it. That's stigmatizing.
One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.
But as you said, we should ask people with milder presentations, and listen. While they may impact quality of life, I don't see any autistic people here or in my communities calling for a "cure" to deal with such problems.
We made a big deal of Autism Acceptance and Awareness Month, which was April. There is no autism prevention movement, unless you count Autism Speaks, which is considered a hate group within the autistic community.
Then you should step a bit outside of your bubble. It's very common in the autistic community - and the neurodivergent community at large.
Honestly, the only hostility toward austitic people I see around here is the person invalidating and ignoring the opinions of others within the autistic community.
When I typed what I had said before about not seeing any different opinions here from autistic people it was not because I was ignoring your opinion but because I had not seen it. Your opinion is valid.
However I don’t honk you were only responding in kind in your last reply — the poster was simply asking a question and you replied with sarcasm.
My question and concern for you is: are you not worried that such efforts will further stigmatize autistic people as in need of a cure without ever actually offering one?
For me the worst of both worlds is one in which people earnestly work for a “cure” to a problem that can’t be solved through medicine, all while making the societal problem intractable (as everyone is pushing for that miracle cure).
They were not simply asking a question - in that case, they could've dropped the second part, which had exactly the same implication as my sarcastic reply.
Anyway...
> are you not worried that such efforts will further stigmatize autistic people as in need of a cure without ever actually offering one?
No, I'm not, because I don't see them as being mutually exclusive. We can do research to understand the causes of ASD and other neurodivergence - and hopefully eventually offer options for those of us who don't like to live with it - and still work toward destigmatizing it and making society less problematic for people like us. We've been doing that for decades at this point.
I would also note that you're only considering outward pressure on autistic individuals - that is, you're focusing on how difficult it is for us to live in society. But that is only one part of what autism is. Even if society were perfectly accepting of us and there were no obstacles at all in it, I'd still be overstimulated by the sound of rain, or have a meltdown because I can't get away from a smell, or... There are various "internal" symptoms that no amount of destigmatization will ever get rid of.
I'll also point out that, maybe the reason you don't encounter many autistic people who want to be "cured", is because people like you - who so strongly oppose such research - make us feel like traitors to our kind, and so we just shut up about it, and feel isolated even from the one community who we shouldn't feel isolated from.
The intended implication was that the typical "parents of" Facebook group does not count as an autistic community. In my experience, the alleged "autistic community" has always turned out to be something of that nature, but I've only found that out after a lengthy back-and-forth. I phrased the question how I did, because I've found that being more direct puts people on the defensive (more likely to lie), and being less direct doesn't get an answer (less likely to give relevant details). You are the first person I've spoken to who has responded affirmatively.
If I had intended to imply that you were acting in bad faith, I would have dropped the first question, consulted the news guidelines, deleted my entire comment, downvoted yours, and then moved on with my life. I did not.
I apologise for how it came across, but this is one of those fake apologies because I really don't know how I could've done better.
> I'll also point out that, maybe the reason you don't encounter many autistic people who want to be "cured", is because people like you - who so strongly oppose such research - make us feel like traitors to our kind, and so we just shut up about it, and feel isolated even from the one community who we shouldn't feel isolated from.
Eugenics is a wonderful idea that of course we should be doing. However, history suggests that humans cannot be trusted with eugenics. Most autistic people, no matter how worldly, no matter how cynical, just don't get how large groups of predominantly-neurotypical humans behave. You know that innate sense of right and wrong you (likely) have? The closest thing (most) neurotypicals have is a sense of honour, and… well. https://en.wikipedia.org/wiki/Honour is not the same thing.
Most people only care about doing the right thing if other people would find out, or if people they personally know and care about would be affected, would they do the wrong thing. For a good while, the prevailing academic thought considered autistic morality as evidence of an autistic deficit in theory-of-mind: autistic people clearly don't understand that they're allowed to do wrong stuff whenever nobody could ever find out! (I've lost the paper I learned this from, but https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4834434/ describes autists as having "atypical inflexibility in morality" – which is damning enough.)
We cannot trust most people, but academia is at its core about distributing knowledge (or "knowledge") as far and as wide as possible. The people most likely to act on this kind of research most immediately are organisations like Autism Speaks, who prioritise stamping out autists over the welfare of actual people. (Exercise: compare Autism Speaks' genetics research budget to their marketing/"outreach" budget. Compare that to their torture-"therapy" budget for trying to coerce masking behaviours out of three-year-olds. Now compare that to the money they actually spend on helping actual people live their own lives.)
No matter how much we want the outcome, we have to fix society before we try to research things like this. And I have no idea how we can fix society enough that we can do eugenics without… well, without https://en.wikipedia.org/wiki/History_of_eugenics.
The ultimate goal of the eugenicist is to eliminate the people who are not like them. This is how it has always been. No matter how they dress it up in smiles and sunshine and roses, this is the beginning and end of their goals.
It is only safe to research eugenics when these people have no power, and there is no expectation of them ever getting power again. (I fear we may never get there, but that sentiment will be a self-fulfilling prophecy, so I continue to act as though things will be better within my lifetime.)
That's why we have the taboo. Hopefully this information helps you talk about your feelings without triggering the taboo. You are right that you should not feel isolated for the way you feel. (I expect that, among the most vocal enforcers of the taboo, are those who feel the same things you do, and for whom pride in their identity forms part of a coping mechanism.) I hope that it is not anybody's intention to exclude you for disliking your own inability to process certain stimuli.
You identified a problem. I questioned whether it was real. You, obliquely, affirmed that it was, but did not provide enough information for anyone (not already in the loop) to address it. Therefore, I spent an hour giving you enough information to begin addressing it from your end. What point does that make?
There are treatments for specific issues associated with autism (e.g. ADHD medication, noise-filtering headphones, AAC tools), but autism is a form of human polymorphism. Like allism and situs inversus, it's a developmental condition, so any research programmes with the capacity to "cure" autism are eugenics research programmes. That's a literal description, not a normative one.
Your desire to avoid suffering is independent of this fact. It's a very much understandable desire, and almost universal among humans. If you make the distinction clear, then well-meaning people won't attack you for expressing that desire. (This has nothing to do with eugenics.) Queer and autistic communities are usually quite big about the right to self-modify.
If you face exclusion or opposition even when it's clear you're talking about your desire to have something available for yourself, and not advocating for a particular approach to be taken (within the context of our sociopolitical environment), I would like to be made aware – ideally with details –, because that's the sort of thing I care about putting a stop to.
Fwiw, I am very, very sad that modern humans cannot be trusted with eugenics. I would like it if that option were available to you. You are not wrong for wanting it. But in the world we currently live in, it's not worth it.
Visual impairment isn't, afaik, something the eugenics bad guys are focusing on at the moment – though it was in the past – so they're not likely to twist research into the sorts of things that get bowdlerised out of history textbooks. (e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5225285/ exists, but there's no organisation seeking legal permission to electrocute non-compliant blind children.*) So even if you keep it vague, advocating for "curing" blindness is unlikely to be seen as, or act as, advocating for eugenics; likewise, research into the developmental origins of (say) congenital cataracts is mostly safe.
Eugenics is when you take measures that improve the overall fitness of the human population. In other words, eugenics is when you decide which kinds of people should and shouldn't exist.
There are people with skin so fair that it burns in even moderate sunlight – even through clothing –, leading to an increased incidence of melanoma. This is associated with the Asp294His polymorphism in the MC1R gene. This would be very easy to "cure"… and I really wish, as a species, we had the capacity to say "hey, option's available to anyone who wants it, but we won't force it on anyone". But if we had that technology today, you know it would be used in some tired plan for ethnic cleansing, where the cruelty is the point and the costs don't matter. Every time we have some scientific (or cultural) advance that can be construed as legitimising such actions, people attempt it.
And maybe we'll grow past that.
---
*: since they've come up in the thread before, I feel obliged to note: Autism Speaks' PR machine is, surprisingly enough, on the right side of this particular child torture issue.
Sure, I had rough childhood, but looking back, I wouldn't want to be someone else. The way my brain focuses and optimises for certain ideas actually benefits society if the environment is correct. There's only limited amount of processing power anyone can have. I just have less points for social and more for other areas that others don't have. Yet society expects us to normalize or consider it a disease. I'm now very successful and extremely proud where I have reached in life.
In my childhood I used to question why people didn't like me, if I had myself from now to guide myself, and create an environment for myself, I'm sure I would have had 100% happy childhood. And I know what and how to do if I ever had someone like myself as a kid, and it's not a disease.
The reason my childhood was terrible was EXACTLY because of expectation that everyone should behave like X, and that was just not me. So everyone tells me I have disease that needs to be fixed. It's disgusting.
I didn't finish high school because of all the issues I had, and spent years in depression, but as I happened to finally land in an environment that appreciated my differing thinking I was able to do exactly what my brain is suited for and make 8x+ average income in my area. I had passion as a kid, interest in weird things, but school and the social environment killed every little bit of it.
As a parent of an autistic kid: How would you cultivate that? Our son is autistic, he is 8 years old. He started to hate school. All he cares for is Minecraft and Magic: The Gathering. It's a bit sad to see that he seemingly drowns his curiosity by immersing himself mentally only in these two topics. I wonder if there's a way to guide him to develop interest in other topics. Any recommendations?
Use that as a stepping stone to increase his interest in architecture, computer science, mechanical engineering, chemistry or aerospace.
https://m.youtube.com/watch?v=jYSfDcbY0w0&pp=ygULbm9taWZhY3R...
Forcing him to do things he doesn’t want to will be next to impossible. RSD is real and irrational. You can trick him into wanting to do things though.
And by trick I don’t mean deceive but just to make him thinks he wants it. Give him a choice and let him choose, but make both options good. Don’t force him to do things your way or the correct way as you see it.
Autistic people like to build and use our own systems, so that’s probably what he likes out of Minecraft, a world he can shape to his liking. He rejects the real world because it forces him to be something he doesn’t want to be.
Maybe the difficulties are things we should address as a society, rather than seeking to eliminate a class of people.
I think the natural reaction to that is that either diagnostic criteria should be narrowed and/or it should be possible for people to lose their diagnosis if they achieve Elon Musk levels of functioning.
-OR-
Autism should be viewed more neutrally, as people of a certain type who are more susceptible to disease or disorders but to not necessarily have them.
It's not a tendency we should suppress. Punishing people for non-conformity is the act of a villain. And yet we do, so that only people with wealth can survive doing it.
Also, the absurdity isn't really Musk in a vacuum, it's him being in the same basket as people who can't complete any activities of daily living. He might actually be more similar to quite a few people with ADHD than quite a few people with level 3 autism. It's very strange and incoherent even.
This is, by the way, all a result of what a mess of a taxonomy the DSM and ICD are.
People who are permanently unable to live independently have a condition that should be prevented if possible.
Sometimes "severe" autism at an early age calms down as a person grows.
Sometimes "mild" autism gets worse as someone becomes dysregulated and overstimulated.
Many times autism is missed in women and POC because they mask more readily than boys. Sometimes it's missed in boys because it's explained as "boys being boys".
Either way, why don't you ask autistic people if they want to be "cured" or "accommodated"? I think you'll find the answer is "accommodation". It seems like, to me at least, it's only not autistic people who talk about "curing" autism, as if they'd be doing the world a favor if there were no more autistic people.
Have you ever even seen someone with severe autism?
Here is a good blog post written by someone, with a graphic that shows the difference between how people think of autism versus how others experience it.
https://themighty.com/topic/autism-spectrum-disorder/autism-...
As they write, this means some autistic people who are nonverbal can go to college, while the author doesn’t have that capacity despite being verbal.
I’ve seen many times in this thread people pointing toward nonverbal autistic people as a reason we should try to cure autism. But it’s not clear to me that people here even understand autism enough to be forming opinions on what we should do to “fix” it. I think if someone is not autistic they should first try very hard to understand a variety of autistic experiences before forming an opinion on what to do about it.
As for me, to answer the original question my neighbor growing up was nonverbal. We used to play legos together. He could communicate, but he didn’t talk and he didn’t like being touched.
All labels including "autistic" are usually very misunderstood - often even amongst people with the same label. Hopefully commenters here are more understanding - given that if you work in the software field you very often deal with people with mild traits of autism.
All the best.
I know deep in my heart if my special interest were birdhouses or windchimes, I would not be in the privileged position I am today. I also know that if my skin were not white, my gender were not male, and my orientation not straight / cis I would not have the same life experience as I did, which all things considered has turned out okay (others called my inability to live a typical life an objectively negative outcome, but I disagree!).
Many of my friends are POC or trans or gay and they face challenges I do not on top of their autism. I don't think I would be nearly as "high functioning" as I am if I weren't conventionally attractive and part of a majority race/ethnic group in my country.
Thanks for listening and learning something; I'm glad my attempt at spreading awareness has worked on at least one person!
What I mean is a person where this would never ever happen.
My children (15 and 10) are learning about themselves but they haven't found an advantage of their autism yet.
But, we function well enough, I can hold down jobs and so will they, it's a set of things we're not good at but we can deal.
The severe cases I know, I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
I guess for me, I can't even perceive of a state of mind which would not see the walls. And I worry... what would change about me if I could see through the walls? Would I still be me? Because I like me, so I wonder what would happen. My great fear when I hear talks of a "cure" is that it will be used as an excuse to cleanse ahem I mean "cure" people like me and you and your sons. So you can understand why I don't want to go down that road. It's been done before.
Although I can't conceive of a world where I can see through the walls, I can picture a world where the walls are not there, and that's what I advocate for.
> I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
It's true, we often wonder what those people would want. People have opinions as to whether they should have existed at all in the first place. I have a friend with Down's syndrome, and she's awesome, and I'm not sure what she would say in this situation, but I know as far as I'm concerned I don't want to live in a world where she doesn't exist exactly the way she is.
So as far as autistic people who cannot advocate for themselves, I'm not going to make the decision for them, and I don't think anyone else should either.
The article says:
> For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.
Despite me being in this category you describe, I do not believe I have a condition that should be prevented if possible. I see researchers like FTA as having a conflict of interest - as wanting to portray themselves as the saviours of those shackled by their metabolism - which is best done by painting the saved in as negative a light as possible. I believe that I've been unfairly defamed and stigmatised by the medical establishment spreading lies and half-truths of convenience to promote the need for the general public to finance schemes to cure this horrible condition and take care of desperate children and families. I've dedicated my life towards enabling others from a trap of dependance caused by poverty specifically, because what else can I really fucking do to change perceptions besides being one person who enabled several others to live independently? Yet it's not enough.
So that's why I come into hacker news threads, throwing shade on the general concept of "Autism", a homogenous condition which caused by concrete biological phenomenon, and our need to cure it. Since to me, it was and always has been, a behaviourist diagnosis of clinical convenience there to serve social ends which gets reified into essentialist bullshit featuring an overbroad label defined by "deficits" that is taken far more seriously than the science warrants which dooms people to stereotyped perceptions, pathologisation, stigmatisation, segregation, eugenics, and warped medical care.
If something should be prevented it's doctors inane, fatalistic, and biased prophecies that somebody will never be able to live independently. It's not proven somebody cannot live independently until they die as dependants, what you describe are only opinions. I have refuted N=1 such opinions already and that won't be the last one.
As in all the time I mean, not just the times you’ve seen them.
I’ve never met someone who does that so I’m curious how it works.
My friend growing up was nonverbal, we used to play legos together. He would scream when he was touched and forced to do things, but it wasn’t all the time. So I imagine someone like your describing would feel that sensory overload all the time. I’m wondering if it is ever alleviated through dark or silence, and if not that would be hard to live with.
I guess in my experience autistic people don’t scream when they’re left alone, but my experience is very limited.
The severity of their autism was then argued based on how few of children with autism diagnosed by age 5 were able to live independently - and I directly questioned the validity of these statistics by pointing out the ulterior motives people have for making such a declaration, and how this isn't actually based on subjective opinions and not empirical measurements.
You respond to my criticism by proclaiming that we're talking about severely autistic children who are non-verbal and screaming all the time.
The average age of diagnosis is between 4-5, around half of the current autistic population were diagnosed by 5, most autism diagnosis in the modern day is for "mild autism", even for early diagnosis. Don't forget that the ever loosening autism diagnostic criteria, half of those diagnosed today would have never been diagnosed in 2014, how mild the autism is of who we're talking about is milder than what most people are familiar with in their past experiences with autistic people.
I work with several software engineers with autism who are as capable as their peers. Sure they may have behavioral quirks, but not significantly more so than the normal variation in human behavior. Their brains don't seem to work in an inferior or problematic way, just different.
On the other hand, I have a close relative with more severe autism who could never read and understand this article, could never type a comment such as yours. She's incapable of holding a job or living on her own without assistance. Her mother passed away young, and her older sister, just 19 at the time, had to take on the responsibility of being her sole caregiver, and she will have that burden for the rest of their lives.
For some it may be a different variation of the human experience, but for cases as severe as my relative's, I find it hard to believe that a cure or prevention for autism wouldn't be a massive quality of life improvement for all involved.
I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats.
I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not.
The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees.
My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?
> What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
People like to say stuff like this on social media, but I can never quite figure out what they actually mean. Society emerges from interactions between people. If someone can’t communicate, how exactly are they supposed to participate fully in society? All people deserve love and support and dignity regardless of their ability to contribute economically, but I’m curious what this “reorientation” would actually mean in practice.
It's not that autistic people cannot communicate, it's that we communicate differently.
For example, I cannot talk on the phone. I just can't. I could explain all the reasons why, but I feel very dismissed here so I'm not going to be vulnerable anymore, but suffice it to say it's something I cannot do, and a lot of autistic people cannot do.
This means people like us can't have jobs which require a lot of phone communication. Accommodations that would allow autistic people to communicate in their preferred way would lead to greater employment of autistic people, but such accommodations are rarely offered for various reasons.
It's other things too. For some people it's lights. For others it's a uniform. For others its noises. For instance, I can hardly go into grocery stores because they play loud music, there's a lot of noises from beeping registers, and the lights are bright and garish. All retailers are like this, and that's where many entry level jobs are. If I can hardly shop there without wearing sunglasses and headphones, then I could never work there because workers are not allowed to wear noise canceling headphones.
Then there are people who require service dogs. You'd think that would be a solved issue, but my friend was just denied entry to a place because of her legit service dog, not even an emotional support dog. They said she couldn't have one because she didn't look blind. Then what, she has to explain to some putz about her autism, expecting he'll understand? No, she backed off and went home and now she won't go out again. It took her that much just to go outside and she was turned away by some busybody, so it's back to being a recluse for a bit.
And that's another thing, is the world could be a lot more accepting of how ND people identify, that would go a long way too. My friend I just mentioned says that her experience as a transgender person is inextricable from her autism. I'm not sure what she means 100%, but also I do, autistic people have a complicated relationship with gender and sexual identity, and a lot of people are very very against those feelings. Autistic people who are transgender (there are many) have a hard time existing in public life because they are shamed, ridiculed, vilified, beaten, and even murdered for who they are. Do you think it's easy for someone who faces those dangers to be employed? There are many transgender homeless people who suffer as a result.
I could go on and on, but all of these things I've listed are ways in which autistic people are marginalized in society, and they don't necessitate "curing" autism to fix, or even really reorienting society as a whole. It's not because they cannot communicate, it's because they cannot participate fully in public life. The solution is to just let them participate in public life. To make things better for everyone involved, we can just be accepting of people's differences and not force them all to be one way, and support them when those differences mean they need help to survive. We can afford to do that as a society I think, why not, isn't that the point of the whole exercise?
Beyond that, I have to be honest: reading about your struggles with communication, lights, noise, etc. it’s frankly hard me to fathom why anyone would not want medication that can alleviate those symptoms. I was diagnosed with ADHD in my 30s, and my whole life suddenly made more sense. Stimulant medication dramatically improved my executive function, attention, concentration, impulsivity, etc. but I am still in every way myself while medicated. I am just more in control of myself. I realize there is no medication like that for autism yet, but if there was, I simply can’t imagine someone not wanting it when my life was improved so dramatically by treating my much-less-severe condition.
That's why labor law generally has the concept of "reasonable accommodations" and core parts of the job. I don't think anyone is seriously saying that every disabled person can do any job.
For me personally, I can get to quite high levels of "socialness" depending on mood and practice. I can get to muster up the courage to do calls, interact more socially, flirt with someone etc. It does take an extreme amount of energy though.
Where I think it differs for me, is in that if I don't do this type of "social training" constantly, it completely goes away again. If I didn't call my doctor/the post office/relatives in a few months, the ability to just do it normally is gone again and I start from 0. Everytime.
My psychiatrist helps me get to that point again but over time has realized that "exposure therapy" doesn't really work because every few months we have to start from 0 again.
Now having all of that said, for most people these types of interactions and things in life are just... normal. They don't require even a second thought. And that, I would imagine, removes a lot of friction from their lives because these interactions are needed to be a self standing, emancipated, contributing member of society.
Yet I've worked 4 different call center jobs and had absolutely no issue talking to people on the phone there. (Probably largely because the "small-talk" in such a scenario is absolutely rote and mundane...)
Fast-forward to my current job (IT) and I hate answering the phone (or joining a meeting) again.
People like your relative, or the kid who sits around flapping his hand and starts freaking out if anybody interacts with him - those people are obviously not just 'weird'. They clearly have severe mental disorders, and if we want to call whatever it is that they have autism - fine. But if we do, then we need to stop calling people like your coworkers, Bill Gates, or whoever else also autistic.
https://www.nimh.nih.gov/health/topics/autism-spectrum-disor...
Literally some of the most high functioning and successful individuals are being diagnosed as "on the spectrum" of what is, in its "real" form, a completely crippling and disabling condition that yields individuals who would have simply been classified as mentally retarded in the past. This is just completely nonsensical.
The reason behavioral characteristics are pathologized is because they near invariably result in "meaningful" harm to an individual or to others. And "meaningful" isn't a guy saying mean things because he doesn't care about your emotions, but rather a schizophrenic deciding to go start killing people because the voices in his head told him to.
It was a life-changing experience for me. Suddenly I was able to understand and validate my experiences and shortcomings, and to improve myself based on that understanding, instead of resigning myself to the fact that I’ll always just be a ‘weird’ human with ‘weird’ opinions, feelings and experiences.
I suppose though that since a random guy on HN said so, this is actually impossible, and I should just go back to having the entirety of my lived experience dismissed as ‘weird’.
Gee, I’m sure glad we cleared that up.
Strategies and research about it aside, the fact that one can come to "accept" oneself despite that condition is very important for general mental health.
I still wouldn't wish it on anyone but personally I'd always accept my self as a valid human with a valid life despite that.
It's always the same game with pseudo sciences. It appeals to our biases or desires, which results in enough people turning off their skepticism (because they like or agree with what they hear) to let it perpetuate itself. In astrology no issue or problem was of your own nature or doing, it was merely because the stars were not aligned. That has gradually transitioned to being replaced by because you have this psychological classification, or that.
You are still the exact same weird person you were before the diagnoses, and you always will be. And that's perfectly normal, so to speak. The declining trend of real, and deep relations, in the West seems to have left many people failing to understand something. Everybody is weird. If you think somebody is "normal", that simply means you don't know them well enough. And weak autism diagnoses and treatment in modern times seems increasingly geared towards pushing people towards arguably undesirable traits (such as excessive emotiveness) while doing away with many traits and characteristics (such as singular focus, minimal susceptibility to emotionality, or obsessive attention to detail) that are highly beneficial for leading a productive and successful life.
Autism isn't about being weird or quirky though -- it's a developmental disorder and the behaviors associated with it are disabling in our society. This is characterize as having "significant impact" on ability to function.
If anything I think the rampant over-diagnoses of middling cases is itself extremely harmful. Because it's going to lead otherwise perfectly viable humans to think that things are just out of their control because they have whatever the trending diagnoses in psychology is, and a diagnoses of failure becomes a self fulfilling prophecy. Suicide rates among those diagnosed with ASD, while having at least average intelligence, are ridiculously high. [2] Whatever is happening with these diagnoses is not this self affirmation bs people are spewing.
A bit more than a hundred years ago we'd have been having this topic, with the context of phrenology [1]. A nice little quote from that page: "Phrenology has been psychology's great faux pas. — J.C. Flugel (1933)." And so too will autism be. Until soon enough we might start to accept that psychology is not just a pseudo-science, but an exceptionally destructive one at that.
[1] - https://en.wikipedia.org/wiki/Phrenology
[2] - https://sparkforautism.org/discover_article/autism-suicide-r...
According to the CDC we're now up to about 3% of kids being "identified" as autistic. [1] In 2010 it was about half as many (per capita). And then in 2004 it was about half as many again. At this rate one can reasonably speak of a majority in the future. Which is quite silly. One of the main differences between a science and a pseudo-science is falsifiability. If an oncologist diagnoses you have a malignant tumor - this is falsifiable. It is either true, or false. You don't need a consensus or an opinion.
But in psychology, there is scarcely such a thing as falsifiability, especially in the overly broad diagnostics. This applies not only to diagnostic/analytical psychology, but even to contemporary research in psychology. Psychology is the butt of the replication crisis with even leading psychological journals seeing replication rates in the twenties. There's something very wrong with this field, and it can be largely explained by considering the fact that it may simply be a pseudo-science.
We are talking about human brains and psyche here, not much is known, and it's hard to conduct falsifiable experiments. If this upsets you, don't concern yourself with such endeavors, who asked you? Not every truth is found through the scientific method. Others are telling you that their diagnosis gave them peace and understand, a foundation on which to build an identity. Why are you here trying to take that away from people? What is your reasoning for making these arguments?
You are talking as if Autism was some sort of virus that you catch and it disables some people a bit, and others a lot.
Some people have hard time, then deal with those people and help them, based on the symptoms, but don't say you have to prevent some made up label to group certain set of behaviors which many are perfectly happy to be with those set of behaviors and perhaps even proud to be thinking differently than most.
We were born with ears for a reason, same thing, our brains are to a huge percentage built for social skills for a reason.
We can call them however we want but all these are basically diseases of various forms.
People can choose their hair color, to grow their nails long, their clothes or the myriad other things that allow us to express our uniqueness, without making life stupidly difficult for no reason when it's already super hard.
There are people who are profoundly impacted by autism. I _can_ go to a shopping center. I don't like it. I may have to hide in the bathrooms for a while a few times while visiting but I _can_ do it.
But I know people who spend most of their lives in fear, because there is just so damn much going on around them all the time. Their senses are turned up to the point that the sound of their own breath is like a lion roaring. The splash of light across the curtains as a car turns into the street is like a lightning flash. Sounds, sights, flavours, smells, tactile sensations all turned up to 15 on a scale of 1 to 10.
Often these kinds of people never learn to talk, or read. They end up living in homes (modern asylums) because they need constant care. And inside they're screaming in terror all the time. Sometimes they scream aloud.
I believe these people deserve better. Helping prevent the development of severe disability is what I believe the article is talking about, not eugenics.
It won’t. Autism is a socioculturally bound diagnosis, not a single disease that exists in biology. It’s a label for those perceived by others in a certain light, defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour. You diagnose autism based on how people act, not who they are. Any biological markers for autism are politically suspect as it would imply those without those markers are invalid, while also raising the spectre of eugenics for those with the markers.
More likely and productivity it might eventually REPLACE autism as a diagnosis with something scientifically valid and treatable, as if somebody displays no autistic behaviours as a result of treatment of a metabolic disorder, why diagnose them with autism?
I believed this until my daughter was diagnosed and then I was later diagnosed. My experience with (some) professionals was a surprise to me; a much wider variety of "observed behaviors" than I expected seem to stem from sensory issues for example. And I think it makes sense that humans might adopt a wide variety of ways to deal with for a much smaller variety of processing issues.
(Unrelated to the professional experience) Have you looked into monotropism? It's a fairly compact theory that ties a lot of behaviors together that might look like they have no overlap from the outside.
Also:
> It’s a label for those perceived by others in a certain light
Lots of people self-diagnose.
I’ll concede that a minority believe that autism is self-definable though. I’d prefer things that way myself, but the among other things it would make it impossible to gatekeep services for the autistic if self-diagnosis were held in the same esteem as physician diagnosis, so it won’t catch on anytime soon.
I am also pursuing a formal diagnosis because so many people downplay it when I tell them I’m autistic. I don’t have the affect at first glance, but it does come out in my behaviors if you get to know me a bit. I’ve also had the luxury of therapy, eduction, etc.
I also agree that the categorization is overly broad and your original post resonates. There are various non-overlapping clusters of traits that fall under autism.
I do think, however, that at the core of it is a common difference in information and sensory processing.
I've also gone into autism communities before and declared that I had self-undiagnosed myself with autism, which is something I've desired recently, to re-diagnose myself as not being autistic and either having nothing or ADHD. This was totally rejected, and repeatedly brought up was my admittance to a lengthy period of diagnosis, overseen my multiple doctors, from a very young age, which all were seen as evidence of the validity of my diagnosis (conversely, I'd presume, they treat the opposite as more less valid or invalid). Interestingly the same people generally accepted diagnosis, but to reject a diagnosis, well that was beyond the pale and denialism. I brought up the same to a psychiatrist, saying I wanted to be treated by a psychiatrist for ADHD and NOT autism because I believe it will lead to superior outcomes. They blew me off, exasperated, saying that any psychiatrist would simply observe my symptoms and deem me autistic and treat me that way no matter what I did, denying that I even had the capability or possibility to receive treatment which was not based on the premise that I was autistic. Metabolic testing and self-diagnosis be damned.
Just this moment I'm in the process of seeking accommodations. I self reported autistic symptoms to my employer. In the past, during interviews they have accepted my diagnosis and pledged to "accommodate" me accordingly, and I was ticked off as a diversity hire. They asked me to verify such symptoms with a doctor. They subsequently said they reserve the right to an independent psychological assessment of myself or my records. This is very pleasing to me, as either I shall receive accommodations and an affirmation that I am autistic, or my undiagnosis, which is truly a win-win.
If I was in family court, and it was argued that I was unable to say take care of children because I'm autistic, I could not successfully object on the grounds that "I'm not autistic".
Yet my observation is what is considered the true measure of somebodies autisticness, the validity of their diagnosis and their symptoms, is independent psychological assessments by an examiner not beholden to your own self-assessment. I theorise this is both because of a lack of faith in the competence of either of us to assess an autism diagnosis, as well as a lack of faith in our objectivity. I've met a number of self-diagnosed people who are shy about disclosure or asking for accommodation BECAUSE they are self-diagnosed, and while obviously believing in the reality of their autism, are either self-sceptical or believe in others scepticism to a degree not commonly seen in those medically diagnosed.
I don't mean to be exclusionary or gatekeeping, just descriptive of what I believe to be social/political/legal/scientific reality. I don't like that things are this way, I'm aware that hilariously I've never seen ANY evidence that suggests physician diagnosis is more accurate than self-diagnosis, I'm aware of the many historical problems with physician diagnosis, I merely believe that they ARE this way.
According to the scientific literature, 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD). From a clinical perspective, this high rate of comorbidity is intriguing. What is the real significance of this dual diagnosis? Is ADHD in fact always present in such cases? Might the attentional impairment reported among our ASD patients actually be a distinct trait of their ASD—namely, impaired joint attention—rather than an ADHD attention deficit? Could their agitation be the consequence of this joint attention impairment or related to a physical restlessness etiologically very different from the agitation typical of ADHD? The neurobiological reality of ASD-ADHD comorbidity is a subject of debate, and amphetamine-based treatment can have paradoxical or undesirable effects in the ASD population. Consequently, does a dual diagnosis, notwithstanding its currency in the literature, prevent us from shedding sufficient light on major physiopathologic questions raised by the clinical picture of ASD?
It's called "autism spectrum" for a reason, partially because a lot of the symptoms overlap with each other, and can appear in every possible permutation.
> The reason many people think autism is a faux disorder is because it includes everything from an individual who simply sits in the corner endlessly flapping his hands, completely unable to function as a human being, to Bill Gates or Elon Musk.
At least for the latter, it's undeniable he's presenting quite a few symptoms, and that even before he went off the rocker in 2018 with the "pedo" comments. He's lucky to be as rich and successful as he is.
Autism and intellectual disability are different things. Successful people like Bill Gates can also be depressed, as can somebody who sits in a corner. That doesn't say anything interesting about depression, nor does it say anything interesting about autism. Same with cancer or male pattern baldness or really just about any condition you care to think of.
This is a phenomenon which is known for a long time in the hacker community. Relevant quote from the Jargon file (http://catb.org/jargon/html/weaknesses.html):
"1994-95's fad behavioral disease was a syndrome called Attention Deficit Disorder (ADD), supposedly characterized by (among other things) a combination of short attention span with an ability to ‘hyperfocus’ imaginatively on interesting tasks. In 1998-1999 another syndrome that is said to overlap with many hacker traits entered popular awareness: Asperger's syndrome (AS). This disorder is also sometimes called ‘high-function autism’, though researchers are divided on whether AS is in fact a mild form of autism or a distinct syndrome with a different etiology. AS patients exhibit mild to severe deficits in interpreting facial and body-language cues and in modeling or empathizing with others' emotions. Though some AS patients exhibit mild retardation, others compensate for their deficits with high intelligence and analytical ability, and frequently seek out technical fields where problem-solving abilities are at a premium and people skills are relatively unimportant. Both syndromes are thought to relate to abnormalities in neurotransmitter chemistry, especially the brain's processing of serotonin.
Many hackers have noticed that mainstream culture has shown a tendency to pathologize and medicalize normal variations in personality, especially those variations that make life more complicated for authority figures and conformists. Thus, hackers aware of the issue tend to be among those questioning whether ADD and AS actually exist; and if so whether they are really ‘diseases’ rather than extremes of a normal genetic variation like having freckles or being able to taste DPT. In either case, they have a sneaking tendency to wonder if these syndromes are over-diagnosed and over-treated. After all, people in authority will always be inconvenienced by schoolchildren or workers or citizens who are prickly, intelligent individualists — thus, any social system that depends on authority relationships will tend to helpfully ostracize and therapize and drug such ‘abnormal’ people until they are properly docile and stupid and ‘well-socialized’.
So hackers tend to believe they have good reason for skepticism about clinical explanations of the hacker personality."
You start off with some institution that has a set of rules on paper, which nobody actually follows or even reads because they discover what they're expected to do via social cues. Then someone with autism doesn't pick up on the social cues, commits a faux pas, and the administration flips through the rule book to find whatever rule they can be found to have broken in order to punish them.
The autistic individual is then told that they are bad and need to learn to follow the rules, so they read the rule book cover to cover and follow every rule to the letter. But many of the rules are aggressively stupid and impractical or even purposely designed to be violated by ordinary behavior so the administration always has an excuse to punish whoever they want. Strictly following them is also a faux pas.
The question then is what to do about it. The autistic individual wants some accommodations so they're not constantly being punished for not picking up social cues. The administration wants them to take some drug that makes them stop being atypical, or to be rid of them. These are, of course, two very different and incompatible things.
"only 10–20% of children diagnosed before 5 years of age able to live independently as adults"
^ the article and the medical treatment is aimed at those so severely impacted/compromised that they cannot live independently.
That last one rear-ended a semi-truck at high speed. Probably after getting lost in thought after reading a "You shouldn't text and drive. If you text and drive, it may be the last text you ever read. Remember, don't read superfluous text; pay attention to the road, for your own safety and the safety of those around you." Obviously I don't know that last part; I am just bitter.
What baffles me, is how someone diagnosed with a condition that affects driving is allowed to drive without the condition being treated - especially if they are under a prescription and just not taking it, and also if they have multiple accidents attributed to the condition. We already require this for people with seizures, for people needing glasses to wear them, etc.
For example, I have ADHD. I learned to drive at 15, got my license at 16, and managed to get my first speeding ticket at the age of 30, and my first car accident at 31 (of which I wasn't at fault). I wasn't diagnosed/medicated until I was almost 23.I do not think I am any better nor worse than the average driver either. Perhaps I have been lucky, but who knows?
Also, just because one is medicated does not mean it magically reduces all symptoms. IIRC, I think most adults only get something like 50% reduction in symptoms at best.
In my experiences, I find the efficacy of ADHD medication to be vastly overstated. I think this is mainly due to a strong honeymoon period the medication provides in the beginning. What I mean is that, the medications are extremely effective for a certain time period, but the longer one is one the medications the greater the diminishing returns become. There are only so many options/formulations and dosages can only be increased to an extent.
Also, euphoria is a very common side-effect when first starting the medications. So, a lot of life-changing anecdotes that people comment on the Internet in the beginning of treatment should be taken with a grain of salt. After a decade of treatment, most people cannot tell if I am medicated or not anymore. As in, most people think I am not medicated despite being so.
But then you have the same problem against something which is much harder to measure.
Many people have glasses even though their vision is mostly fine and it's perfectly reasonable to drive without them, the glasses just make things slightly more focused. Other people are effectively blind without corrective lenses.
ADHD is the same way only you don't have a nice mathematically precise lens prescription to tell you the degree of it, and with no objective way to measure the severity, just asking people a question that everybody knows can cause you to have a restriction placed on you is pointless and only invites people to lie. Which in turn may make them less likely to seek and receive medical treatment -- the thing you want to happen if they are a hazard without it.
This is further complicated by what the treatments for severe ADHD are. Can you imagine the headlines? "Government forces drivers to drive on meth."
The cause isn't determined by luck or number - it's determined by the facts that show you or the other person was at fault (or that nobody was at fault).
You don't necessarily have to report mileage for insurance, it only happens for registration when the vehicle changes ownership, and in either case that is the mileage on the vehicle rather than the driver. Someone who drives 100,000 miles a year might very well be doing it in multiple different vehicles.
> Even if you drive 100k miles in 5 years, you should not have 5 accidents that were your fault. That's just insanely unsafe.
It's not a large statistical sample. A large proportion of the people it happens to will be drivers of average skill operating under conditions with above-average risk. Being an unsafe driver isn't the same thing as driving in an area with unsafe intersections.
> The cause isn't determined by luck or number - it's determined by the facts that show you or the other person was at fault (or that nobody was at fault).
Most of these investigations are cursory unless someone dies, and under those conditions they're basically impossible to get right except by chance. One car rear-ended the other, the driver in front says the other one was following too closely, the one in back says the other cut them off and then slammed on the brakes, there were no unbiased witnesses. Whatever goes into that report is going to have the accuracy of a coin flip if the accident isn't one that warrants a thorough investigation -- and even then there may be no way to ever know what really happened.
Even if you talk about someone cutting you off, that doesn't happen often. You aren't going to get 5 "coin flip" accidents in 5 years. There are dash cams if you're really that concerned. Which brings up another good point. If you really think that fault will be attributed to you incorrectly that often, then your insurance will surely go up, so you already have a dash cam to protect yourself from this existing reality you are peddling?
It has to be accurate for everyone. You're talking about imposing a restriction that amounts to house arrest for anyone who can't afford a city apartment or a chauffeur.
> Even if you talk about someone cutting you off, that doesn't happen often.
I see that you have not experienced the wonders of New York traffic.
> You aren't going to get 5 "coin flip" accidents in 5 years.
If you flip a coin 5 times in a row, the chances of it coming up tails every time is 1 in 32. Against a hundred million drivers that's a lot of people.
And that's assuming it's fully random and not e.g. you have the first two falsely attributed to you at random, at which point investigating officers see your record and become biased to finding you at fault in any case going forward.
> If you really think that fault will be attributed to you incorrectly that often, then your insurance will surely go up, so you already have a dash cam to protect yourself from this existing reality you are peddling?
People don't think it will happen ahead of time, they realize it can happen after it already has.
US motor vehicle laws are also (presumably intentionally) designed to let the police come to any conclusion they want as a pretext for searches or revenue-generating citations. For example, hardly anybody follows the speed limit, so if you drive below the speed limit then you're impeding the normal flow of traffic (nominally a violation), and causing a (real) hazard because other cars will bunch up and perform lane change maneuvers to go around you. It's also "suspicious"; the people who do it are disproportionately drunk or in possession of contraband. But if you drive with the flow of traffic then you're speeding which is also a violation.
A dash cam might then help you if an accident is caused by the other driver doing something egregious, but if it's caused by e.g. bad road design and the officer is nonetheless expected to assign fault to somebody, now you're handing them a pile of evidence from which to identify common violations. It's not obvious that it helps you.
Autism has clear physiological differences in the brain. It's not just a personality difference. People like to call themselves autistic when it's just social awkwardness, and some doctors might even improperly diagnose them, but these are separate from the condition.
https://www.healthcentral.com/condition/autism/autism-brain-...
This could help us prevent autism completely.
What makes such a diagnosis incorrect when various forms of social awkwardness satisfy criteria A and D of the diagnostic criteria [1], and all of the criteria for social pragmatic disorder[2]? In the DSM-V-TR era psychiatrists are instructed to not just judge somebody to not be autistic if they do not appear socially awkward, and to additionally ask if they find social interactions distressing, and observe them for longer in more naturalistic settings to find the deficit in social functioning[3] as part of a thus far continuously lowering diagnostic bar as to what is considered sufficient social awkwardness to be diagnosable.
>Autism has clear physiological differences in the brain.
Which physiological changes in the brain make you autistic, or put another way, which physiological changes in the brain must you lack to NOT be autistic? I've heard of any autism diagnosis's and self-diagnosis's and I've never heard of any of them being based on a brain scan and yet people go around calling others and themselves autistic. I've never heard of a diagnosis being lost or gained due to a brain scan.
I've heard this insistence that we can infer the territory, the neurological conditions of peoples brains, from the map, the behaviourist diagnosis, and there may be a correlation but it can't be said that any given person with an autism diagnosis has any given specific neurological change. The only thing we test for IS behaviour, and infer biology from it.
[1] https://www.cdc.gov/ncbddd/autism/hcp-dsm.html [2] https://en.wikipedia.org/wiki/Social_(pragmatic)_communicati... [3] https://www.reddit.com/r/aspergirls/comments/th9hku/dsm5tr_n...
Most people who use terms like autistic, bi-polar, sociopath, narcist, etc. are using the terms incorrectly.
Also, I suspect you are correct that most ASD diagnoses do not use brain scans and rely on a trained professional's judgement and observations. That fact does not mean that autism does not exist or that some autistic people may have physical differences from neurotypical people.
Self diagnosis is often the first step towards a professional diagnosis.
You can choose to believe self diagnosis is low or zero value, but that's your own value judgement, which is separate from "can" and "cannot".
This puts medical boards in a sticky situation where they have to be inclusive since there's not enough research to say the latter group are definitely not autistic.
I'm in the camp that you shouldn't diagnose an issue without clear physiological or chemistry differences, but I'm not in control of the medical boards. I think we all agree that you shouldn't self-diagnose.
Relatedly, I was struck to see the recent breakthrough in curing congenital deafness condemned by members of the ‘deaf community’ on Twitter. So we unfortunately have good reason to expect the same kinds of folly here.
In the same vein, I wouldn't oppose a cure for autism, despite my own diagnosis. Why go through the pain and suffering that comes with autism in a world of non-autists? I've seen more than enough of the lives of people with non-high functioning autism to realise the absolute living hell a cure like this could prevent.
I'm wary of the "cures" people have tried, most of them based on fake psychology or pseudoscience, but I have no reason to expect the authors of this paper to be in it to show how their kid is "normal", like most people looking for "cures" seem to be. I expect this article to be quoted many times in the terrible Facebook groups that will also recommend things like bleach enemas to desperate parents, but I also expect good developments from the real scientists trying to understand and perhaps cure (the worst cases of) autism.
Ultimately, not everybody seeks to be "normal", and there is plenty of reason to fear the imposition of normalness when simply being functional would have done just fine.
None of us are truly normal.
Even though the last thing has got me in fights more than once. Fights that are sudden, surprising and unwarranted to me, but completely expected given how I reacted to what someone said.
For me it began to click due to somewhat similar discussions I've had about my sight (I'm moderately myopic in both eyes and significantly astigmatic in one), where I've explained that:
- yes I actually like wearing glasses, and am not interested in contact lenses at all
- yes I also like my uncorrected vision: I like the softness and the smoothing over of details, and the way that lights scatter, and the fact that I can focus on things that are right in front of my nose
- no it isn't anxiety that's stopping me from getting the likes of LASIK; I actually like having both corrected and uncorrected vision
And it is astonishing how much people who are caught up in their own complexes about vision deficiencies try to convince me that I'm stupid or even lying because I don't share their aversion. It was rather off-putting, to be honest.
So yeah, that was how I began to see how people whose condition (for lack of a better term) is much more strongly linked to their identity[0] would end up with their hackles permanently raised against the idea of a cure for a life experience that they find neutral and/or positive coupled with the prevailing sentiment that they must be so grateful and excited about its existence (and if they aren't then they must be stupid or crazy). Theoretically it's good that the capability exists because it gives the choice to those who do want it, but when a person is part of a group without much societal power to begin with, I don't think it's irrational to fear that it would eventually end up as an imposition rather than a choice (especially when we get obstetric treatment).
0. For example, sign languages are distinct linguistic phenomena and not simply a cipher for spoken language. And wherever there is distinct language, a distinct culture soon follows. This is why "Deaf community" and "Deaf culture" are real things in real life not just something that someone on Twitter made up, contrary to many abled people's assumptions.
- Anyone can wear glasses (or even contacts) for fashion, frames are sold without prescriptions. One can have glasses and perfect vision.
- People with 20/20 vision also have the option to wear glasses that make their vision worse for whatever reason, or see things closer to their nose.
The point of this comment wasn't to belittle your own choice to correct your vision or not, but to point out why someone might not understand your aversion to correcting it given those reasons.
And this supposedly makes so much sense to you that you cannot understand why someone would not do that?
Alright.
So, no you didn't read that correctly.
We also have the western eugenics movements, and while autism wasn't really conceived in their heyday, they had much more of a family-centric take on eugenics, although it was still at the time largely oriented around the good of the welfare state.
For the autistic activist, nothing makes more sense than to stymie such research, as autism's diagnostic prevalence expands each year, seemingly driven largely by a loosening definition of autism, so to delay the research which enables eugenics, people are going to see Autistics as having relatively high gemüt and productivity compared to the past, which should discourage eugenics. They plainly value the right/value of the existence of autistics/themselves, above the potential reduction of suffering allowed by such research. Eugenics after all never actually died and remain popular, it's just become politically incorrect to openly admit to supporting or doing it, and we're currently engaging in a quite successful eugenics campaign against downs syndrome[1], oh, and the ongoing eugenics against autistics [2]. Perhaps these autistic activists would have more confidence in such research if modern eugenics were not legal, accepted, and practiced against them? Or perhaps they should just get over their own egos and admit that this research is for the good of the Volk, which is certainly a take I've heard from autistics themselves.
That all being said - metabolic research is probably going to be less controversial than say genetic research, since it's unclear that you can use the former to facilitate selective abortions or screen sperm donors. So I think in this case, the self-declared neurodivergent leaders will let this slide, as if such research can't be used for eugenics but makes autistics more popular it should make eugenics less likely, not more likely.
[1] https://www.psychologytoday.com/us/blog/fully-human/202101/i... [2]. https://www.dailymail.co.uk/health/article-3377811/Britain-s...
This is untrue and unsupported by evidence
> It's a label for those perceived by others in a certain light
This is untrue and unsupported by evidence
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
This is untrue and unsupported by evidence
> You diagnose autism based on how people act, not who they are
You diagnose all disorders based on observable phenomena, not some sort of metaphysical essence.
> Any biological markers for autism are politically suspect
What is this, Lysenkoism?
> as it would imply those without those markers are invalid
Are you saying that in your view biology has some ability to mark people as valid or invalid? That's an extremist view and I wonder how you arrived at it. If your ideology requires you divide the world into "valid" and "invalid" people, then it's probably a good time to rethink your approach.
> This is untrue and unsupported by evidence
Here is the diagnostic criteria for ASD: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html ... It literally lays out a path that can generate a non overlapping diagnosis. It sort of has to because we lummped what were previously two disorders together because people are sensitive to nazi's having existed.
Now go to the UK where there is strong advocacy for a whole other set of diagnostic criteria for women. The DSM begins to look barbaric and/or sexist if not misinformed.
The moment there is a biological underpinning to something like ASD it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label. They have something that looks the same but isnt... and the whole psychiatry/psychology community looks like quacks. DO note that im not opposed to these fields but they need to get their shit together on reproducibility.
> It literally lays out a path that can generate a non overlapping diagnosis.
It does not. If you believe there are exist two autistic people who have no overlapping symptoms please present an example.
> The moment there is a biological underpinning to something like ASD it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label.
Compare this to, "The moment there is a biological underpinning to something like cancer it gets interesting because what do you do with all the folks with a diagnosis who DONT fit that label." To which the answer is "that's a red herring, the current understanding of cancer doesn't require all cancers share the same biological origins, so why should finding one marker call that into question?"
Or "The moment you locate the code line with a buffer overflow it gets interesting because some programs that seem like they have a buffer overflow don't have that line of code."
> Autism is a socioculturally bound diagnosis
I'm making a normative claim here, so your criticism is correct, as this is not a scientifically testable claim at all. I'm loosely an adherent of the social model of disability[1].
> It's a label for those perceived by others in a certain light
First, you later agreed with this statement later when you said "You diagnose all disorders based on observable phenomena" so this criticism is incoherent and I'm not convinced you even disagree with me so much as misunderstand me. Scientifically I'd point out the DSM-V-TR defines autism observationally[2] and the CDC's research on autism uses said definitions[9]. That is evidence supporting what I say.
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
I'll again point to the DSM-V-TR[1] where two individuals can satisfy section B of the criteria with no overlap whatsoever. The only necessary behavioural commonality are various social deficits. I'll also point out there are three categories of autistics depending on support needs.
More blithely and common-sense like, I'll just point out most people do not see all that much common in the behaviour of Elon Musk and some autistic in a full time care home who cannot dress or bathe themselves. The Autistic Spectrum also literally used to be split into 3 separate diagnosis's diagnosed based partially on behaviour, and how was that ever even possible or contemplated if people never believed there was a significant difference in autistic's behaviours?
---
>Any biological markers for autism are politically suspect - What is this lysenkoism
I have not scientifically researched this specific point, but some historical background: Autism genetics research projects have been cancelled by patient backlash [3] where autism genetics projects were scuttled upon popular backlash. "Autistic psychopaths" in the past were subject to Euthanasia, forced sterilisation, and encouraged to voluntarily sterilised themselves by the Nazi regime[4] which raises obvious questions as to the utility of biological testing to enable a future eugenics regime which may also include new technologies like pre-natal testing. While not biological testing, we can see that there is political backlash against cognitive testing[5] to determine social supports for autism. We have also seen the rise of self-diagnosis[6] with it defended as being more accessible than physician diagnosis and based on the lack of evidence that it's LESS accurate than physician diagnosis which historically has been subjected to multiple definitional changes[7] and bias in terms of access to diagnosis itself[8]. Ergo, unless this serves as a method of diagnosis more accurate than physician diagnosis, it will be subject to the same criticism.
> as it would imply those without those markers are invalid - Are you saying that in your view biology has some ability to mark people as valid or invalid?
I'm making a claim about others belief if biology should be used to establish the validity or invalidity of autism. It's my belief that the recognition of biological markers of autism would be vigorously protested by patients and advocacy groups because of what I just brought up.
[1] https://en.wikipedia.org/wiki/Social_model_of_disability [2] (please forgive the source - DSM-V-TR is under copyright) https://www.reddit.com/r/aspergirls/comments/th9hku/dsm5tr_n... [3] https://www.scientificamerican.com/article/high-profile-auti... [4] https://www.goodreads.com/book/show/36236157-asperger-s-chil... [5] https://www.cbc.ca/news/canada/nova-scotia/direct-family-sup... [6] https://www.psychologytoday.com/us/blog/neurodiverse-age/201... [7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9365987/ [8] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8924013/ [9] https://www.cdc.gov/ncbddd/autism/data.html
I'm able to mask until I'm alone. My meltdowns look exactly like the observed behavior you see in other people, I just hide it better.
I'm also verbal mostly, until I'm not and I'm dissociating. Then I look a lot what you're used to seeing, except i don't let you see that. I don't let you see me rocking and stimming.
I can talk for an hour in front of 100 people about my special interests at any depth, but I can't complete simple tasks that others can do every day like going to the grocery store and restaurants without extreme difficulty.
Some people are "high functioning" autists, meaning that they are able to suppress their negative autistic expressions for the benefit and comfort of people around them. This doesn't make them "not autistic" -- they still are even if you personally can't tell. It just means they're putting on an act for you, to make you happy, so that you don't respond in the negative way they are used to being received. You are witnessing a performance.
That suppression is not a constant, and it can't go on forever. Someone doing this long enough will go into autistic burnout, which is like an extended depression and comes with skill loss and an inability to function in society. If you were to see this person at that point, you'd "see" the autism then.
Is this all there is to being autistic though? No! Being autistic comes with a great capacity for curiosity, creativity, artistic expression, innovation, and excellence associated with committing fully (as in actually 100%, eschewing loved ones and society) to an endeavor.
These are things we don't want to "cure". Most of the problems I face related to my autism have to do with interfacing with society, and not understanding people or not being able to do things everyone else seems to be able to, without any compassion for my inability to do so.
As far as I can tell they come from being dysregulated, and being dysregulated comes from extreme sensory overload. If we can fix the sensory overload a lot of other things are fixed. But that doesn't mean we should be "curing" or "preventing" autism, and it doesn't mean people who aren't melting down and who can live by themselves aren't autistic -- they're just well regulated.,
"Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."
"Core diagnostic features are evident in the developmental period, but intervention, compensation, and current supports may mask difficulties in at least some contexts."
"Individuals who have developed compensation strategies for some social challenges still struggle in novel or unsupported situations and suffer from the effort and anxiety of consciously calculating what is socially intuitive for most individuals. This behavior may contribute to lower ascertainment of autism spectrum disorder in these individuals, perhaps especially in adult women. Thus, longer assessments, observation in naturalistic settings, and inquiring about any tolls of social interaction may be needed(Cage and Troxell-Whitman 2019; Hull et al. 2017). If asked about the costs of social interaction, for example, these individuals might respond that social interactions are exhausting for them, that they are unable to concentrate because of the mental effort in monitoring social conventions, that their self-esteem is adversely affected by being unable to be themselves, and so forth."
Observation is STILL actually essential to a diagnosis, you can't merely just claim to be masking, but it's not technically considered disqualifying for symptoms to only appear in certain contexts.
>Some people are "high functioning" autists, meaning that they are able to suppress their negative autistic expressions for the benefit and comfort of people around them. This doesn't make them "not autistic" -- they still are even if you personally can't tell. It just means they're putting on an act for you, to make you happy, so that you don't respond in the negative way they are used to being received. You are witnessing a performance.
The research I've seen on the cat-q shows that [1]:
- Neurotypicals men mask a statistically insignificant amount more than autistic men
- Autistic women mask a statistically insignificant more than neurotypical women
- Autistic women mask a statistically significant amount more than autistic men
- Autistics "Compensate" more, copy others behaviour, copy behaviour they learned from movies
- Autistics "Assimilate" more, they will force themselves unwillingly more than others to be social or not be social.
We should also get over what gets somebody defined as having "high functioning" or "level 1" autism. It's a lack of severity of social impairments AND restricted & repetitive behaviours. With autistic men specifically, the evidence points to the "high functioning" as simply naturally exhibiting less autistic social interactions and behaviours than the "low functioning" without any exceptional effort beyond what the everyday non-disabled person does. Some of them may be tortured actors, but said people are no more prevalent than they are in the general population. It's things like imitation, and being in unwanted social situations, which is more characteristic of autism.
>Being autistic comes with a great capacity for curiosity, creativity, artistic expression, innovation, and excellence associated with committing fully (as in actually 100%, eschewing loved ones and society) to an endeavor.
Those may correlate with autism, but aren't definitional of it. The DSM-V-TR's 1891 word diagnostic criteria briefly mentions "Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life" as the sole positive trait of autistics.
I don't mean to be a dick here - more activist. If these are qualities of autistics, they should either be part of the criteria for "Autism spectrum disorder" or autism should be conceptualised as being distinct from disorder similar to how we distinguish between being transgender and having gender dysphoria. Otherwise, one can say that all they wish, but they'll face negative stigmatisation from those who see autism as a definitionally negative mental disorder with no upside other than employability. "Autism" is quite the stigmatised word today and I blame psychiatry and The DSM for that more than anything else as they treat negatives associated with autism as definitional but not positives.
[1] ctrl-f "What it tests" "Average Scores" https://embrace-autism.com/cat-q/