On the topic of metabolic disturbances in Autism, huge fan of the work Dr. Randy Blakely is doing on the links between Serotonin metabolism and Autism. One of the most surprising, and strongest (25-30% of patients), biomarkers for Autism is actually Platelet Hyperserotonemia (high levels of bound Serotonin in the blood).
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.
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
Dr. Blakelys lab has produced knock-in mice with the rare SERT variants described, and they have exhibited the behavioral and biochemical markers of ASD. It's actually a very remarkable finding. They also saw a reduction in ASD symptoms by pharmaceutically blocking the offending inflammatory pathways.
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.
So there is a clear result found and then post hoc there is an explanation made for why this makes sense. That's a bit of a red flag since you preferably hypothesize first, but let's look at the analysis. If I'm not mistaken, then these are the most important parts:
- 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?
> So there is a clear result found and then post hoc there is an explanation made for why this makes sense. That's a bit of a red flag since you preferably hypothesize first, but let's look at the analysis.
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.
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.
I’ve only ever seen “this ^” refer to the parent comment, not the one directly above it as you mention. So as long as the comment hierarchy is maintained (which it is on HN) then the reference is clear
"Of 50 biochemical pathways and 450 polar and lipid metabolites examined, the developmental regulation of the purine network was most changed. Purine network hub analysis revealed a 17-fold reversal in typically developing children. This purine network reversal did not occur in ASD."
That's a strong statement, and one which can be checked by others. Anyone trying to replicate this yet?
The article was published today, and study like that take months to do and then months again to be published especially in this kind of journals (thankfully they don't accept replications most of the time so it can get published by more reasonable venues).
The paper is a super fascinating read, and lines up with several key features I've noticed in both of my professionally diagnosed autistic children (good luck getting access to a competent diagnostician who understands how the ASD criteria manifest in passing adults). It's really enlightening to see the association between Xanthine, one of the end-stage products of eATP metabolization, and the anxiety that is so prevalent within my own family.
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.
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.
They're investigating the use of a drug that they don't understand to treat a condition that they don't understand...
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.
My ex was schizoaffective. They thought BP1 for a while, but then she started hallucinating while baseline. Anyway, I've seen her take all the meds. Some work sometimes. Then they don't. Most of the time we'd be dealing with symptoms of the meds, which are not easy. When she was completely manic even the highest dose of some meds would not work for her. Actually a side effect of one of the meds had the same symptoms as schizophrenia, so in that case what was even the point?
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
You're right, a lot of times it seems like they just wanted to give her a pill and strap her down to a bed. Good sleep was far more important to regulating her wellbeing, but that was very difficult with the side effect of akathisia, which is common of antipsychotics. So it became a matter of upping the dose until it would make her pass out after hours of writhing pain. A daily occurrence.
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.
I don't have a lot of experience with using research papers, but I feel like people writing these articles don't either.
> 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.
As some one who is let’s say “autism adjacent” it really bothers me when people discuss a cure or prevention. I mean I get it, but this is also who I am and I wouldn’t want to be someone else.
I'm on the spectrum (diagnosed), and also like being me (most of the time).
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.
> 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.
The problem is that when you teach society that a certain “kind” of person needs to be culled, that is a stigma about people in that group.
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.
The slippery slope scenario you described didn't happen with the Down syndrome for which there is a reliable screening. There are a few people want to ban that screening and they use exactly the same arguments (also it's eugenics!). We're lucky that at least these people are rightfully viewed as insane.
I am not familiar with the deaf community nor the controversy surrounding curing deafness. If you're asking me if I support firebombing clinics, no. I don't know what incident you're referring to.
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:
> But I don't exactly see why hearing people are deciding that they must "cure" their child's deafness.
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.
The article seems to be focused on people who are unable to live independently.
>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.
Its also missing how speacalists with traits and hyperfocus are the driving force behind a ton of research. Then again having a retarded kid is like having a 60 ton weight attached to you for life. Yes, yes, we are not allowed to say this, but thats easily said by those who don't wear the weights.
as someone who’s also autism adjacent and content with it, let’s still recognize that it’s not called spectrum for nothing. Yes, one’s norm of "functioning" can be more dependent on society than you’re own opinion, but I’ve witnessed several individuals on the "lower functioning" end of the spectrum who really didn’t seem like they were content with the way they’re living life. I’m not infallible, but it definitely seemed that way.
At minimum we should center such people in these discussions rather than talk about them with pity or only when using them to advance a rhetorical point. I want to hear from people with the highest support needs on this issue the most.
That’s even worse, of course you are allowed your own feelings. What gives me the creeps is when people start talking about prevention it easily slides into eugenics or other things that deny poeople agency or even their humanity.
There is a similar thing for deaf people. Or how screening for Down’s has changed the reality of raising a child with it.
If there is a way to prevent your child a life of hardship resulting from being deaf or born with down's syndrome, are you genuinely saying you wouldn't do 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.
It’s one thing to prevent being born with hardship and preventing being born at all. Which is the case with Down’s screening.
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.
Nobody's forcing you to get a cure. But denying it to others is a really weird idea. Until we can tell apart kids who will develop fun quirks from those who won't be able to live independently, prevention doesn't sound bad either.
I have no problem with discussion about making some issues people face better with medication, although I think autistic people should be centered in those discussion.
However “prevention” talk is a whole separate issue and that one does give me eugenics vibes.
I know of at least one book written by and for autistic people who advocates for a gluten free diet. They claim in the book that this significantly reduces their symptoms.
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?
Anecdotal, but we grow a heritage strain of wheat here in PHX (Sonoran White).
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 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.
There is a very strong inverse correlation between obesity and elevation above sea level, the higher you go the thinner the people. One of the thoughts is that environmental contaminates are in higher concentrations the further down the water cycle you go, and these contaminants cause obesity.
I’m not sure it’s so simple. Socioeconomic studies indicate that the worse shape you’re in, the less social mobility you are likely to have. Moving on a whim might not be possible for many of these people.
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
> And that many common chronic disorders/illnesses (including ADHD, Autism, weight gain, etc) in our generation are actually attributable to a disfunctioning microbiome
That's absolutely not true. Diabetes for instance used to be extremely rare and limited to the elites.
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.
A lot of exercise increases focus and reduces fidgetiness. Also, if there's fewer things to keep track of and less everyday choices to make, it's easier.
I have ADHD bad but it virtually goes away while backpacking for reasons I described.
In the 1960s you had to learn to mask your differences or you would suffer violence directed at you. We used to beat kids for not behaving in the ways we expect.
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.
Another confounding variable is that we got so much better at testing many things that we have people living long enough to clearly manifest problems that may not have decades or centuries ago.
Sort of like how a big part of the increase in cancer deaths are people living long enough to die of cancer.
What is referred to cuisine today is partly preserving food in bacteria killing chemicals. Do you mean to hypothesize people ingesting more (traditonal) bactericide are sicker?
The short answer is: No, there isn’t a simple treatment for Autism based on simple diet, lifestyle, or supplement changes. There are countless books, blogs, and social media influencers claiming to have unlocked something, but it never translates to something broadly useful.
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.
And it might also help for reasons that have nothing to do with gluten. Almost any major dietary restriction tends to cause broader changes in diet than just the thing that is restricted.
That’s what I thought too. It seems that the only general lesson we have in dieting which js reliable is “refined sugar bad” and that intermittent fasting works for getting blood sugar under control.
Nah. Most "nutritionists" are clowns. Anyone can call themselves a nutritionist with no formal training or certification. The whole field is mostly filled with frauds and grifters.
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.
There are studies showing positive health outcomes for ASD on a gluten free diet, as well as for epilepsy and schizophrenia. Here [1] is a comment with some links, the featured article might also be interesting.
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.
Gut issues are a common comorbidity with autism, it could just be he had some kind of gluten sensitivity and treating it allowed more energy to compensate for autism.
The other really big comorbidity one is ADHD - I’ve seen claims that the rate is high as 80%, maybe even 100% if you allow for very mild cases that probably wouldn’t be independently diagnosable.
When “comorbidity” is used in this context, are we actually referring to people dying because of it? Or does it just mean “are found together when discussing this disease?”
In common use ("don't be morbid", "that's morbid") I agree that 'morbid' has a connotation of death, so I don't think your understanding is wrong. In this case, a 'co-morbidity' is a term of art in the medical literature with the specific meaning of "occurring with".
The Latin morbus is disease and mortis is [of] death but my experience - and perhaps yours too - is that when discussions of morbidity (i.e. using the word morbid/morbidity) arise, they are often in the context where someone is near death or has died so it is a natural linguistic connection to make.
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.
Asperger here, who doesn’t eat gluten at all for almost 3 years now (due to allergy). I cant say it improved symptoms of autism but my life is divided between before/after stopping gluten consumption. I feel like I just started living for real.
I'm hardly an expert on autism but I've fought ADHD for years, and good diet/lifestyle is essential.
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.
"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.
Gluten-free only makes a difference for those with an intolerance. Source: I am HF-ASD, my wife is gluten intolerant so my gluten intake is sporadic but bingey, gluten does nothing at all to me.
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?
I'll incidentally mention that gluten-free diets tend to incidentally be lower in FODMAPs which are another gut intervention, and autism has LONG correlated to digestive and dietary issues. Ketogenic/low-carb is also popular.
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 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?
As an autistic person, professionally diagnosed, this sounds like nonsense woo. Yes, gut bio can influence moods and managing your health can improve symptoms from autism (e.g. meditation might help manage anxiety).
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.
I feel like this is going to be used by pseudo-science influencers to push trendy diets to prevent autism when this study is observations stage at best.
yea example now there are guys in this comment section claiming keto has cured their adhd/autism. Helped reduce symptoms, sure, but cure? (I've got both of them been on keto, like crazy strict ensuring i was in ketosis every two days type, and it only reduced brain fog personally)
Whenever you get an HN story that even remotely brushes up against health, fitness, or nutrition, you inevitably get all the wacky exercise, supplements, and diet commenters coming out of the woodwork to tell you all about "what worked for me". It's a constant that you can 100% count on every time.
On reddit challenging intermittent fasting or keto can easily get you insulted, then banned.
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.
You can also add agriculture to that list, apparently we should give up the wins of the green revolution and go back to living in this idealized world of Permaculture food forests and tree houses (George Monbiot has some great takes on these ideas).
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.
Probably, but it's hardly a requirement. There have been some doing it for decades, partly fueled by Wakefield's "autistic enterocolitis" pseudoscience and partly the usual organic/vegan/raw/paleo/keto bullshit.
"with only 10–20% of children diagnosed before 5 years of age able to live independently as adults"
> 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.
there are other factors here. Children diagnosed with autism at the age of 5 must be adults now to determine if they can live alone. So they were diagnosed at minimum 13 years ago, with many diagnosed much earlier. Autism diagnostics is much more common now than it used to be, especially in families with higher economic status. Diagnostics tools evolved, more kids are tested and tests capture more kids. So I think this number will be completely different in 10-20 years from now. In my experience as a parent of ASD kid, many kids now considered ASD would not be considered ASD 20 or 30 years ago.
Meanwhile African countries are still waiting for a vaccine against Malaria to be delivered to them.
The only people who dislike vaccines are those who live in a world where vaccines are so successful they no longer have to care about the problem the vaccine is solving.
I think this is a true statement, but the lack of further comment is in itself a value judgement.
The only people who dislike vaccines, are people who felt lied to, or were forced to take them. Their concerns may have been invalid in some instances, or even most instances, but the fact remains that at least a few of their concerns were valid.
Yes it is. It's exactly what the article suggests:
---
... 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]
Pathologizing autistic behaviors is not the right approach here. Most autistic behaviors are harmless except insofar as allistic (non-autistic) people provide unnecessary consequences for it and through incompatibilities. We don't say that a Linux workstation in a network of Windows computers is broken or needs to be fixed (or visa-versa), but rather we recognize that the problems are due to the differences. As such, attempts to "cure" or "prevent" autism are actually an eugenic attempt to remove harmless variation that many people irrationally deem to be objectionable.
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.
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.
There are two ways that something can lead to needing help with daily living:
- 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.
It wasn't invented on the spot. In the past, I have thought extensively about what should be considered a disorder, if the concept of "disorder" is even coherent, and how this applies to what treatments should be performed, available, and researched.
There is a big difference between "neurodiverse" people and severely autistic people facing huge challenges in their life. Are you seriously dismissing the idea of helping treat that latter group?
" 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.
> There is a big difference between "neurodiverse" people and severely autistic people facing huge challenges in their life. Are you seriously dismissing the idea of helping treat that latter group?
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.
Thanks for you comment. I was only splitting the spectrum into the two broadest categories for rhetorical simplicity.
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.
The medical system has a history of mistreating marginalized groups (of which neurodiverse people are definitely an example), and there are a huge number of people who fund and perform research aimed solely at eradicating all forms of autism. Autism Speaks is one such group (which is an ironic name since the views of the organization differ greatly from those of most autistic people), and they are quite active in autism research and well-funded. As such, I do not think that giving the benefit of the doubt is reasonable. Furthermore, even if the researchers have an excellent and completely ethical view of autism, many people reading about the research will not so giving such a perspective remains valuable.
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
I think you're engaging in the no-true-Scotsman fallacy with the claim that highly autistic people with a lot of special needs are really "autistic with intellectual disabilities". I disagree. They're simply more autistic and more impacted than either of us.
They did not say no true autistic person are intellectually disabled. They said they are overlapping groups. Like Scotsmen and people who put sugar in porridge.
They're saying that no true definition of autism can contain intellectual disability by classifying any intellectual disability in an autistic person as a distinct, totally independent condition.
> 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".
Do you have autism or ADHD? This is actually a really contentious issue. Tons of people with the condition are happy to let others be themselves, but want to be cured.
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.
Used to have a mix of what could be considered ADHD/light asperbergers. I dont eat carbs and mostly stick to a keto diet, it resolved many symptoms. Our food is poison
> what could be considered ADHD/light asperbergers
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.
Professional assessors should know much more about the condition for which they are assessing and its signs than any one person who may or may not have the condition. A professional should also know the other conditions with similar symptoms.
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.
If you knew anything about how "diagnosis from specialist" works in practice you wouldn't dismiss self dismiss diagnosis so easily. "The specialist" usually spend a few hours at most on the diagnosis (if even that) while people who self diagnose live with the symptoms their whole life.
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).
You gaslighted yourself by claiming you don't have ADHD/aspergers anymore. The only explanation is that you either never had it, which is closer to what you said or that you still have it, which is ignoring what you said.
I'm Broad Autism Phenotype (BAP) and prefer low carb because I feel better, but it doesn't change my personality traits or cognitive tendencies one iota.
I have a noticable ability to react quicker in social situations, im more "normal". Otherwise my brain is sluggish and i struggle to maintain conversation/things go over my head
Do you have microbiome dysbiosis? A keto diet might improve things (eg lower LPS production), but long term can diminish microbial diversity. I’m not saying keto is bad at all - it’s just that microbial diversity is an important predictor in GI health and one should keep an eye on that too.
Yeah i mean i know that keto isnt great, but it has changed my life to some degree. When in ketosis, i feel like i have "agency", otherwise i am this foggy headed, sloth
https://www.metabolicmind.org is a non profit, with many MDs and PHDs dedicated to researching the link between metabolism and mental health, with a focus on keto diets.
Autism is rooted during fetal brain development. Behavioural and metabolic changes show up later. There is no an egg and chicken problem. The primary disease starts in the CNS and everything else follows
The gut hypothesis hype is trendy right now. There is some correlation but when things settle down, some of the effect will be attributed to "picky eating".
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
Exclusion of either cause directions is impossible by definition. This is science not mathematics. But saying that the primary mechanism of mental disease lies outside the brain must not contradict decades of research and simple observation (eg a small brain damage leads to a profound behavioural image while cutting 5 meters of small intestine to none)
Extraordinary claims require extraordinary evidence.
No developmental anomaly can start after birth. It must preexist but is not detected. Proof: heavy cases of autism are diagnosed at birth, so the beginning lies sometime in uterus. The same holds for the lighter cases too.
What the fuck? Of course developmental anomalies can start after birth. Yeah, many initially develop in the womb, but like, the time in the womb is a trivial percentage of a child's development.
Nonsense. Developmental disorders can be caused by any number of factors in early childhood, like stress, neglect, infection, injury, and exposure to substances in the environment like lead. A multifactorial disorder like autism may have many different causes, and we don’t know enough to say for certain that they all originate before birth. I’d wager they do not.
I understand the sentiment, but there's a reason it's called the autism spectrum.
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.
Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by.
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?
> 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.
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.
> If someone can’t communicate, how exactly are they supposed to participate fully in society?
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?
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.
Thank you for sharing that. I’m not going to address every example in your comment, and I agree that there are many ways society could be more accommodating. But I also think that not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it. Some jobs require you to talk on the phone, just like some jobs require you to lift heavy boxes. Not everyone can do that, and that’s ok. I can tell you with absolute certainty that I could not do my job as an engineering executive if I could not talk on the phone or video calls, since so much of my job is about making emotional connections with other people, understanding subtle cues and subtext, and influencing people. I have colleagues who I know are on the spectrum, and I greatly respect them and do try to accommodate them where possible. But some things require a level of social skills they simply don’t have.
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.
> not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it
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.
It's honestly even more subtle than this. I absolutely agree with you about talking on the phone. I avoid doing things when I know it will mean I have to call ahead - and I would much rather go down there in person and get looked at weird for making an appointment in person.
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.
The problem is there's no such thing as "Autism". It's a survey and observation of behaviors that "oh you don't quite behave like we see 90%+ of people to behave socially, so you must have a disease. Let's call it autism."
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.
Then people should stop conflating the two. This whole "spectrum" nonsense is nonsense. Your coworkers are not autistic - they are weird or whatever other more PC term you might want to use, and that's great - many, if not most, great engineers are!. There is no need to pathologize differences in people. Your relative, by contrast, is. If you have a habit of feeling sleepy at work, it's not like we say you're on the narcolepsy spectrum. It's just a completely dumb concept.
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.
I got my autism diagnosis in my early 20s (from a licensed psychologist, before you ask).
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’.
Same here. After a diagnosis, one is able to give in and learn how to cope with it instead of fighting it, struggling and letting it lead to self deprecation.
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.
Why do you think things like astrology persisted for so long? If not for the Church (which banned astrological prediction as blasphemous contradicting religious belief in self determination), it'd almost certainly still be with us. In fact when founding modern psychology Jung was heavily influenced by astrology. See - astrological psychology. [1] And his earliest work was with schizophrenia, from which the invention of autism would shortly emerge as a form of 'mild schizophrenia.'
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.
Yes all people are weird, and autistic people are people, so it's no surprise they are weird. I don't think this is a failing of Western imagination, I'm not sure who gave you this impression.
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.
Well, no. Many of the behaviors associated with it, even the literal diagnostic criteria, are extremely beneficial in our society. It's not just a weird coincidence that many of the most successful tech, engineering and even business figures could be (and in multiple cases have been) diagnosed with autism of varying degrees, notably post-facto.
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.
There’s this thing people online tend to do where they’ll take a well-defined word or phrase like autism spectrum disorder and just decide that it actually should mean something else and get mad when everyone else uses the word in the “wrong” way. It consistently derails conversations, and it almost never brings anyone around to a place of greater understanding.
I'm not arguing over the semantics. I am rejecting the entire concept in its overly broad state. Imagine somebody said 'Oh don't worry about your weird coworker. He's just acts that way because he's a Sagittarius.' Obviously you'd look at them pretty cockeyed. I'm not arguing about what a Sagittarius is, but rejecting the idea of it having a well enough defined meaning to ultimately mean anything. Of course millennia of people of all classes, including the founder of analytic psychology (who was quite enamored with astrology) would have strongly disagreed with me.
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.
What you are seeing is the effect of acceptance and awareness, not overly broad diagnostic criteria. It's not reasonable to extrapolate from these rates to half the population.
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?
This is like asking where to draw the line when somebody is bald. Are you bald if you have 1 hair? Yes. 2? 3? 137? There's of course reasonable room for discretion in saying what is or isn't bald. But it isn't reasonable to say somebody with a full-on afro is on the spectrum of being bald.
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.
What you call "real" form is just a strong form, and there is no clear line to draw between real and not real autism, or between "completely crippling" and "not completely crippling", etc.
Because pathologizing and aiming to "treat" behavioral characteristics that are not only not harmful, but actively beneficial in many cases, is completely and utterly absurd. It'd be akin to something like, 'Oh you seem to be oddly content with your life. Have you gotten yourself screened for stoicitis? I hear there's some treatments available.' It's just 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.
Autistic as an identity and autism as a disease are different things that are difficult to uncouple. Similarly to obesity, it's difficult to talk about the health aspect without people being sensitive about the identity aspect. I find it's useful when reading about research to empathize with the authors and realize their work is an attempt to be constructive instead of providing social commentary.
I'm being productive by pushing back and saying that when people say that autism needs to be cured and prevented, that they shouldn't say that, because autism doesn't need to be cured and prevented.
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.
Of course society should become more accepting and accommodating of differently-abled people of all types. But can you really look at the extreme end of the Autism spectrum and say that isn't a disease or disorder?
One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.
You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
It's true, miscommunication and misunderstanding, as well as stigmatization can lead to situations where autistic people are hurt or even killed. This happened recently with Ryan Gainer, who was killed by police after he charged at them with a gardening tool during an autistic meltdown.
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.
I agree, I'm always happy to step out my bubble. That's why I'm here on HN -- this is not a safe place for autistic people. That said, it was not obvious to me you are a spokesperson for Autism Speaks.
Pretty sure the person you are responding to is just being an asshole, inadvertently demonstrating your point that this isn't a safe place for autistic people.
I was only responding in kind. And I'm autistic myself, so.
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.
I’m not invalidating opinions from autistic people tho, I said many times autistic voices should be centered.
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).
> the poster was simply asking a question and you replied with sarcasm.
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.
> 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.
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.
I thought your point was about your opinions being invalidated and ignored, but now I don't think I know what your point is.
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?
… Yeah, I see how you could take that away from it. Thanks for explaining.
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.
Depends. Cool cyborg eyes, better glasses, cataract surgery, retinal detachment surgery, etc. are not eugenics, so they're fine to advocate for. Heritable genetic modification, embryo selection, sterilisation campaigns etc. are eugenics, and advocating for them will do more harm than good.
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.
> You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
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.
> 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?
Best I can say is lean into it. Make everything those themes or adjacent to them in some way. You’re lucky because Minecraft is a gateway to computing in general. Find out what he specifically likes about it and then figure out how to use Minecraft to build a bridge toward real world skill that still include everything he likes about Minecraft.
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.
Thanks, coincidentally, I listened to a podcast episode about RSD (assuming you mean Rejection Sensitive Dysphoria) this morning and yeah, it is absolutely real. He's extremely sensitive to criticism, which often results in a vicious cycle. Will try to work with Minecraft to give him more topics. So far, he didn't like the whole Redstone logic stuff, but maybe it'll come in a bit. His mathematical abilities are actually quite good (and so are his language capabilities).
Those experiences wouldn't have happened if the autistic people were medicated to neurotypical or neurotypical people were more accepting of autistic people. And many autistic people would reject being medicated to neurotypical despite those experiences.
I can. When I look at extremely functional autistics like Elon Musk, the idea he has a condition which makes him diseased and disordered is absurd.
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.
Do you have a personal relationship with the man? We're all well aware of his public persona but that has nothing to do with how it is to actually interact with him as a person. Or any other autistic person. Watch Hannah Gadsby: Nanette and realize that you don't see the failures, only the successes.
Elon Musk is highly functional but he also has a wide and deep support network unlike most other autistic people. He self immolates all the time and he's propped up by his great wealth. He self medicates with drugs. He has a team of people who handle his every need. When normal autistic people self immolate as such, they are cast from society forever - fired, locked up, abandoned, or even killed. And just because someone is high functioning today, it doesn't mean they will always be or always have been.
Not only that, consider the societal advantage of this behavior. Many social rules are wrong and group-level maladaptive. Having a subset of the population that doesn't adhere to those rules benefits society by allowing it to break out of local maxima.
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.
Yet he functions well in niche circumstances, and he's currently in said circumstances and functioning. Not only that, most people would not be able to function as well as Musk in Musk's shoes.
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.
This is about people diagnosed before the age of 5, they're almost all cases of severe autism. That's very different from the kind of autism you're talking about.
People who are permanently unable to live independently have a condition that should be prevented if possible.
As a spectrum, autism presents in many ways, but it's all considered "autism" at this point. There are not different "kinds".
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.
I have autism myself and so do both my kids, I would love it if there was some way to lessen it. It's a great hindrance for me, all the time I want to do things that I feel I should be able to do, but then run into various walls.
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.
Thank you for sharing your experience, I agree there are so many walls!
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.
Autism is a spectrum disorder, but while you may be picturing it as a continuum from less autistic to severely autistic, with nonverbal autistic people at one end and high functioning autistic people on the other, that is not the reality of 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.
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.
Thank you for your candid comment. It is frustrating to engage via comments and I have learned something from your comments.
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.
Yeah I think people who are autistic gravitate toward it. It's a very happy coincidence that so many things about computers attract autistic minds. It's a skill that's valuable enough and specialized enough that autistic idiosyncrasies are tolerated to a greater degree than in other fields.
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!
IIRC it's not really masking, more that children of color are more likely to get labeled "disruptive" or "defiant" than diagnosed as autistic, at least compared to their white peers. Two kids could exhibit the same behavior, but one is correctly recognized as having a meltdown and the other is written off as a troublemaker.
I was diagnosed at 4, I have legal paperwork proving I permanently cannot live independently, as such paperwork is necessary for impoverished families and adults to access certain social and financial benefits. I currently live independently.
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.
No, the discussion here was about the 5 year olds diagnosed with autism in the study.
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.
Do you have an example of an autistic person screaming in terror all the time?
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.
> 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.
It's not the autism that does any sort of disabling. If there are some sort of issues that are disabling someone's way to live normally, deal with them, but don't use autism as a label or call it a disease.
There's no "autism" as a "disease" that causes those symptoms.
Autism is a condition which cause is not exactly clear, but there are clearly identified symptoms "attached" to the "word/label" "autism". Which is how you define/classify/identify a word, and in this case a disease or a disability if you prefer.
May no parents with autistic children ever read your comment.
So what's the issue with non-verbal "autistic" people then? All those people with the same symptoms and presentation, if that's not a disease or better, a disorder, then what is it?
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.
I don't care about being hip, woke or cool. It's just my perspective of the World. Also speaking of experience, I don't see how I have a disease for example.
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.
There are specific challenges every person in the World faces. Deal with these specific challenges. But don't group bunch of people as autistic and then go on to call it a disease. Many of the challenges are caused by the environment or flawed social expectations.
I'm diagnosed ASD as well and I strongly disagree with your statement as it stands.
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.
If you don't mind being on the spectrum, that's great for you. Some of us are looking forward to more research like this. Many of us don't want to go through this struggle forever, or make another generation go through it, all while waiting for society to get its shit together and completely reorient itself to be neurodivergent-friendly? No thanks.
This is just ridiculous, just like some deaf people wanting their kids to be deaf to be part of the deaf community.
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.
> The researchers discovered that a small number of biochemical pathways are responsible for the majority of these changes, which could help inform new early detection and prevention strategies for autism.
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?
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.
>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.
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.
Diagnosis for autism is complicated because some people act the same as people with clear physiological changes, but without those changes.
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.
You cannot self-diagnose, and only a trained medical professional can diagnose autism. By trained medical professional, I mean an autism expert who is either a therapist (PHD, PsyD, LMFT, etc.) or a psychiatrist.
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.
Here’s hoping. Autism is pure hell for some families. Unless of course self-declared leaders of the ‘neurodivergent community’ declare such efforts to be genocidal, modern eugenics, and so on.
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.
I've seen the same protests among certain deaf communities and it baffles me that someone would oppose a cure to what is obviously a medical condition.
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.
> it baffles me that someone would oppose a cure to what is obviously a medical condition
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.
When you are close to the norm, it’s much easier to ignore your differences. When you are farther away, you have to decide what to do: deny them, accept them, mask them, amplify them.
Remember, the article is talking about people with profound disability, not people who can comment in forums. I think it would be fantastic _if_ there's a set of markers in a young infant that can be acted on preventing non-verbal, constantly in terror, withdrawn inmates of special hospitals. I don't think they're talking about my dislike of telephones, or fear of shopping centers, or frequent confusion with figurative versus literal language.
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.
Mmm, that sounds rather uncharitable. While obviously Deaf people aren't a hivemind, I think people who are not Deaf (and fully-abled people in particular) should listen when they each speak for themselves instead of coming to broad conclusions of "folly".
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.
I'm not trying to convince you that you should get LASIK if you don't want to, that's your prerogative, however:
- 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.
I'm sorry, if I'm reading you correctly you think that I should...pay for eye surgery, go through the recovery period and then...continue to use vision correcting glasses, albeit with a different prescription (one that simulates myopia and astigmatism)?
And this supposedly makes so much sense to you that you cannot understand why someone would not do that?
My first sentence literally says I'm not trying to convince you, and the reasons you gave in your previous comment for not doing so are different than the ones you're giving now.
The history of Autistic Psychopathy/Aspergers specifically, which has a direct throughline to the modern concept of autism, is inexorably tied to the history of Austrian and later Nazi eugenics. Sterilisation was supported especially more by Nazi hardliners, although catholics tended to support voluntary abstinence. Involuntary euthanasia was practiced, not openly, against the autistics deemed to be life unworthy of life - of no use to the Volk - who lacked gemüt (Soul, spirit, etc). Those deemed at one time redeemable, but ruined by their parents were also purged. Those deemed more useful, brilliant, geniuses in the sciences, with good Nazi parents, but with lacking gemüt due to their hyper-masculine nature, were to be rehabilitated and treated with patience and understanding, but even there reproduction was to be AT LEAST discouraged. The ideal Nazi autistic was either dead, or like a worker bee, sterile and working tirelessly for the good of National Socialism and the breeding stock Aryans. One of the goals the child welfare system had was identifying which category each child fell into as young as possible, so as to treat them accordingly with haste.
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.
> defined in such a way that two with the same label can have remarkably little overlap in terms of observed behaviour
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
If you ask the majority of people if somebody who they do not perceive as engaging in autisitic behaviours, and was not diagnosed as autistic, but considers themselves autistic, is autistic, they will say no. Scientifically (which how it’s defined in the OP), it’s not defined by psychiatrist appraisal and self-assessment plays no necessary role in the process and alone holds no diagnostic validity. We can also invert this: self-denial doesn’t make one non-autistic if they’re seen as engaging in autistic behaviours and are diagnosed as autistic by a professional.
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’m not sure what point you are making with this reply. I’m late/adult self-identifying autistic. I’ve done this with some of the standard tests that psychiatrists use, attended workgroups related to the topic, and studied extensively. Self-diagnosis is highly accurate for autism, both for positive and negative evaluations.
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.
Adults that get diagnosed later typically have developed very good ability to mask so casual acquaintances probably don’t suspect they are autistic. So it’s not surprising they would downplay it.
>Self-diagnosis is highly accurate for autism, both for positive and negative evaluations.
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.
I’ve never met anyone that self identifies as autistic that didn’t have some obvious behaviors (in the tech world there are a lot). This seems like a strawman.
Here [1] is the DSM diagnostic criteria for autism. It's broad to the point of absurdity. 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. The weaker diagnoses, which is an increasingly large chunk of all of them, often seem like an effect to pathologize normal behavioral differences within people. This is, IMO, one of those things people are definitely going to look back at think 'wtf were they even thinking?'
> The weaker diagnoses, which is an increasingly large chunk of all of them, often seem like an effect to pathologize normal behavioral differences within people.
"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."
Which in turn becomes the dichotomy between wanting the diagnosis and thinking the diagnosis is silly.
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.
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.
> 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.
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.
i thought we prescribed adderall for autism, but i guess cross-diagnoses are just so common nowadays that i didn’t realize what it was being prescribed for among people i know
You may be under this impression because ADHD and Autism are so frequently comorbid:
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?
I mean I was diagnosed with a salad of things. And then different doctors tell me different things about how they're all related or unrelated. It was honestly a very amusing situation. The only sense I got out of the whole long ass process was: neurological sensory difference "combo" in the roll of the dice, some of it given hereditarily, some this that and the other. I really see why this stuff is so frustrating for people. I'm super lucky circumstances are such for me that I can give less shits about the social issues my autism causes, allowing me to explore it.I actually just started a blog last week to share as I explore this stuff, I'm a bit shy to share it as I've never blogged in earnest before, so I have no sense of if this is good, bad, silly, lame, boring, etc: https://b.h4x.zip/autism-thinking-and-whiteboards/
> 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.
>> 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
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.
Thanks I'm thoroughly familiar with the DSM criteria, the ICD criteria, and the research literature.
> 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."
Responding to all the "This is untrue and unsupported by evidence" statements. In the context of this thread, which is addressing a scientific article.
> 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.
I think they meant "people who didnt die before 25." I don't know much about autism, but I had three friends who died before 30 in accidents that were almost certainly related to ADHD. Two of them were doing behavioral therapy but didn't believe in pharmaceutical treatment. One of them was generally medicated but wasn't taking their medication on the day they died (due to medication shortages for ADHD drugs).
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.
I knew someone in high school that had ADHD. He totaled many cars when he wasn't on meds for things like game day for sports (not sure if that's a performance or health thing).
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.
That's mostly the same for seizures - affects people differently (and different effects), medications provide various effectiveness, and individual evaluation is needed.
> We already require this for people with seizures, for people needing glasses to wear them, etc.
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 easy thing to measure with it is how many accidents are attributed to the person in a given time period. If you have 5 accidents including totalling 3 cars in the last 2 years of high school, you shouldn't be driving.
That doesn't actually tell you anything. Someone who drives 100,000 miles/year at the same level of safety would have 20 times more accidents in the same period of time than someone who drives 5000 miles/year. Certain areas have more traffic or are otherwise more prone to accidents. 5 is not a large enough statistical sample to know if someone is the cause or just unlucky.
Yeah yeah, you have to report mileage for insurance and registration so of course that will be taken into account. Even if you drive 100k miles in 5 years, you should not have 5 accidents that were your fault. That's just insanely unsafe.
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 have to report mileage for insurance and registration
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.
My state requires mileage every year. Even if it's not accurate for everyone, it's accurate enough for vast majority of people.
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?
> Even if it's not accurate for everyone, it's accurate enough for vast majority of people.
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.
But what does the have to do with Autism? That quote seems to be more about people not finding fulfillment/confirming to social expectations/wasting their lives vs. a neurodevelopmental disorder.
Not the GP, but since they mentioned high-functioning autism I’d guess they meant people with autism able to (very) successfully adapt to social expectations will likely forgo self-fulfilment in order to conform, without even necessarily being fully aware of it.
I think most people understand that disease nomenclature changes rapidly. Even if the word "autism" is deprecated in the future and replaced by a litany of other terms for conditions, the research is still useful and interesting.
> 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.
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.
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