Brain overgrowth dictates autism severity, new research suggests
medicalxpress.com
medicalxpress.com
A doctor wanted to operate my brain as a baby, but my mother didn't let it, and in the end, it was the right choice as it had a meaningful chance of my death.
I also struggled with language at first, and I went to many years of speech therapy, but eventually, it got better. My learning rate with languages is definitely not the best, but I still speak three languages after a good amount of effort and can communicate effectively.
It also gave me plenty of advantages; I always scored pretty high on IQ tests and had very good long-term memory.
Because I don't buy this narrative from the article or in medical research that there are two kinds of autism. In my opinion, there's only one, and that one has SEVERE conditions; I had a relative who had autism, and it was complicated for both the person and their parents. To me, this seems like a naming issue like software engineers do, who struggle to name an abstraction correctly, and after three years, that abstraction means everything.
Having a different kind of brain wiring isn't some sort of sickness or anomaly. All brains are very different, just like your toes. When you compare them to others, you'll see quite a few differences.
All this is to say that while there might be one "source insult" that creates most of what we cluster as Autism, it is extremely unlikely. There are probably multiple different insults that create multiple conditions that we crudely cluster under the same Autistic umbrella. It is useless to try and define what is the "true" Autism - we need to understand the underlying mechanism first - maybe then we can give whatever we do understand better its own name.
As to why we are quick to label, I'll just say that in my country, as a child psychiatrist put it to me - before the mid-90s parents were angry with him when he made the autistic diagnosis, a trend that was then abruptly reversed and parents started to demand he label their neurodivergent kids autistic, even if he didn't find the diagnosis to be accurate. What changed? The country started to give disability benefits to parents with autistic children.
1) One big change is the recognition that Autism, regardless of particular definition, responds to therapeutic attempts much more effectively in early childhood, rather than later.
2) Much of the effective work is around "functioning" -- if you can't speak, well, an "autism" diagnosis is going to change what's attempted in response, but the goal is still going to be to get a kid to be able to speak. That's much easier when a child is still 2 or 3.
I'd like to preface this by saying I don't feel strongly about the naming issue in either direction.
Initially I figured the authors were using the word "Autism" as used in DSM-5, where it's a blanket term for a range of conditions. But, their repeated assertion of "two types" of autism doesn't line up with that theory: DSM-5 defines three levels, not two.
They definitely aren't using the DSM-IV definition of Autism (the stricter definition that you prefer), and they also aren't following the taxonomy laid out in DSM-5. Where did their definition of Autism come from?
Was it implied that their two-level model was derived from the results of their tests? If so, I missed that part. They mention a correlation between brain overgrowth and severity of symptoms, but they don't mention a clear separation in the test data that would justify classification into two distinct groups.
I understand that DSM isn't gospel, but if they're going to make up their own taxonomy, they should provide some rationale for it.
> the biological bases of two subtypes of ASD social and brain development—profound autism and mild autism.
The Methodology section actually specifies they are using DSM-V (sic) and “Mann–Whitney U to test ASD clinical subtype differences in symptom severity” as well as that they test for IQ. They also specify which instruments they used to test symptom severity, neither of which actually measures subtypes of autism.
This is highly confusing as DSM-5 does not have any subtypes of autism. It has 3 severity levels for two of the symptoms criteria which is used to specify the accommodation needs. Those symptoms criteria is social communication and repetitive and fixated behavior. Intellectual ability is not on this severity level, instead psychiatrists are instructed to specify whether or not autism is accompanied with intellectual impairment. Further if you look at their table 1[1] you can see what they mean by the two subtypes, which is basically, low IQ vs. normal IQ.
This is actually much closer to ICD-11 where one of the 8 subtype of autism is 6A02.0 - without disorder of intellectual development and with mild or not impairment of functional language. So it looks like the authors used DSM-5 to diagnose autism, and then used the philosophy behind ICD-11 amend the DSM-5 diagnosis. Note that the ICD-11 approach has been heavily criticized as researchers have shown pretty thoroughly that there is hardly any correlation between intellectual ability (or IQ) and other symptoms of autism. That is the only reason to specify intellectual impairment at all is so that autistic individuals with intellectual impairment need additional accommodations for their disabilities.
I suspect what happened here is that the reason they specified these two supposed sub-types of autism is political. That they basically took what used to be called Asperger’s and said that was one of two subtypes of autism.
1: https://molecularautism.biomedcentral.com/articles/10.1186/s...
I'm not sure that's a narrative? In fact quite the opposite, currently anything from the 'different kind of brain wiring' you mention through to the 'SEVERE conditions' that you acknowledge as autism are all seen as varying aspects and varying degrees of the same underlying difference. Once you get more acquainted with the less dramatic forms of autism there are significant commonalities.
That said, however well-founded the reasons for merging Asperger's Syndrome with the umbrella Autism Spectrum Disorder, I do feel we've lost some nuance in the process. There definitely seems to be a qualitative difference between "person who's a bit different and struggles with some aspects of life, but may be exceptional in others" and "person who's severely impaired and will never be able to navigate life on their own (even if exceptional in others)." Having shorthand terms to identify the two independently was useful.
For them they’re just a little bit different, and they wouldn’t want to be someone else. They don’t realize there are people like my cousin that needs to live in a group home because he’s almost non-verbal.
Yeah, it reminds me of that X-Men meme with Rogue talking about a cure and Storm saying there's nothing to cure because it's not a disease. "I'd take a cure" thinks the nonverbal kid with severe everything who needs 24/7 care. "Shut up, we're perf" says the girl who's the world expert on diffractometry but doesn't always pick up social cues.
I tend to liken the term ASD to saying 'lower limb impairment disorder'. Did I stub my toe? Is one leg off at the knee? Was I born with no legs at all? Who knows, it's just LLID! What are you meant to do with that information? No idea.
I really think in a lot of ways it'd help to have a couple of smaller buckets inside the giant bucket that is ASD.
The reason we don't is because it's not possible. Every time someone tries to make a high / medium / low-functioning distinction, some PhD gymnast running three companies and a dog shelter who can't reliably feed herself has a weeks-long non-verbal episode after she wore the wrong colours to an investor meeting, and completely ruins their categorisation system thereby.
If there's one thing all autistic people have in common, it's not being well-described by the paradigms according to which you want to bucket them.
That's not to say there aren't apparent subtypes of autism, just as there are apparent subtypes of allism. But they're hard to pin down, and they're not really useful for what you want to use them for: there are people in each of them who live happy, fulfilled lives, and who struggle to function on a daily basis – and who could be described by both of those clauses, for that matter.
If I may get a bit direct, if you believe that the move toward classifying some things as spectrum disorders, and neurodiversity in general, is about pathologizing the range of human behavior, I'd encourage you to spend some more time looking into it.
I have a son who is on the spectrum, he is often assumed to be neuro-typical by people he doesn't spend a lot of time with. He is "high functioning", but is still vastly different to his peers with issues that I don't think anyone would categorise as "severe", but the impact on him emotionally and our family unit as a whole is severe and pervasive.
To be clear, I am not offended or upset, I just feel that you need to be made aware that you are deeply ignorant on a topic that is only a blip in your world.
And yet, in social environments, if he is kept stimulated and has a lot of positive attention, you would never guess at this other side and we feel that people look at us strangely when we mention how hard our family life is. The ironic thing is I'm sitting in my home office right now and I can hear him having a meltdown outside as my wife is trying to keep him entertained.
It causes huge issues for us, and we've been having a difficult time keeping things together as a family. My wife and my relationship has suffered a lot.
PS. We have another son, two years old, who is just a typical child. Challenging at times, but otherwise fine. So it's not like we did anything different.
This is almost certainly not what is going on inside his head. I can't tell, from your description, what is happening – if you're not being deliberately vague, that suggests that if nothing changes with your schema, you're probably not going to learn what's going on until he figures it out himself, and then figures out how to tell you in terms you'll understand. That might take years.
I doubt it has very much to do with what you see as "him being perfect": that might be the way you conceptualise the pattern, but (except to the extent he's learned this concept from you) I doubt he's thinking anything remotely similar. It is more likely to be https://www.autism.org.uk/advice-and-guidance/topics/behavio... – but however good this description may be, this is not how it feels from the inside, aged 5. Likely any labels or schema you attempt to apply to this from the outside will be intensely distressing, and the perception (e.g. from your body language, or even just a routine expectation) that you're exhibiting judgement might be enough to tip a shutdown over into a meltdown. So… don't do that. (If this is a factor, what "don't do that" entails is beyond me, and probably beyond your son. It's perhaps not beyond you-plus-trial-and-error, and it's perhaps not beyond a child psychologist.)
If this is what's going on (and remember, this is just a guess), then… basically, you haven't a snowball's chance in hell of manipulating him out of it. You're going to have to be understanding, and you're going to have to be honest. Example: if he were refusing to eat / reluctant to eat / shut down over the prospect of eating, you would have to say something like "I don't want you to starve, but you don't have to eat this right now.", or "You can eat something else, if you make sure you're eating lots of different things, and make sure this food isn't wasted.", or whatever your actual requirements are, put in terms he can understand, with options available but not constraining. (If you couldn't do this honestly, you'd have to find some other approach. I cannot stress how important the honesty is: play-acted, exaggerated emotional responses are fine, so long as they're real. Five years old is old enough to see through it.) The details obviously depend, so I don't know how helpful this is.
You're using the usual words, so I expect you're already aware; but, in case you're not, consider the advice in https://www.autism.org.uk/advice-and-guidance/topics/behavio..., especially “identifying the causes” and “sensory considerations”. Be aware that social considerations might be significant (see above… I wrote this all out of order).
I suggest you seek professional help from a child psychologist, specialising in autism. The job of a child psychologist is to figure out what's going on with your child, and explain it: their job's to be a best-effort interpreter so you don't have to wait a decade until your son can invent a complete theory of psychology with which to explain things to you himself.
(Do not go to anyone who promises, or suggests, behavioural modification – especially not if they mention ABA. This will not help your son. (If they're framing some non-coercive play-like activity as giving him tools, teaching him to recognise his feelings, or something like that, it's probably fine – not at all what I'm suggesting in the previous paragraph, but if you've found someone safe, he might find that useful for other reasons. See https://www.autism.org.uk/advice-and-guidance/topics/positiv... for more information. (Stay away from Autism Speaks: they have a lot of webpages about this, but to a first approximation, they're a hate group.)))
> He calms himself by going into a dark space and sucking on a comforter.
Yeah, that points to sensory processing issues, but it sounds like he's already pretty good at self-regulating. That's something to work from. You'll know better than I, but you might be able to involve him in the process of working out what his needs are. If you do, that means you mustn't talk over his head about it. (So: don't listen to what he says, think of an idea, then immediately turn and tell somebody else about it. Not saying you have to involve him in everything, or that everything that happens should be something he understands, but make an actual effort and an obvious one.)
Involving him is probably just making sure he knows there's a puzzle, and he's best at finding the clues, and he can tell you the clues (or his guesses) whenever he wants to: I don't know whether interrogation would yield any results.
https://www.tinygnomes.com/qwiki.cgi?mode=previewSynd&uuid=B...
We had already known from autopsies that neural density in certain brain regions is much higher among autists.
This is certainly... something
Females store fat on ass and hips first, males on the gut first. Not only, but primarily first. Once these regions get to a point, fat accumulates all over.
Kids are indeed fatter in the West, just as adults are.
> The best illustration of “spillover” is the incredible increase in the size of the ass and thighs in girls. This is not due to squatting or implants, because you see it at very young ages.
I do not disagree, but there is a way to notice it and comment on it that has far less probability of being considered "creepy" by someone reading. The author is of course free to do as they please, doesn't make their point any more right or wrong.
That being said, as a person that is mildly on ASD spectrum I was bit intrigued by the hypothesis of higher lactate orinted energy production in autistics. It would match two of my lifelong problems, having strong exhaustion (food coma) after eating high carbs and having similar reaction to even short (5min) high-intensity workouts. I had to adapt by avoiding large doses of carbs and focusing more on resistance training with large pauses inbetween.
I am baffled how some of my friends can eat a mountain of white rice or workout hard for hour and be completely fine after.
>”Now that Courchesne and Muotri have established that brain overgrowth begins in the womb, they hope to pinpoint its cause, in a bid to develop a therapy that might ease intellectual and social functioning for those with the condition.”
There is a slight difference between “beginning in the womb” snd beginning in some odd organoid derived from blood cells.
Autism research imho tends to be flaky and this type of press release does not help.
Here's the conclusions section from the research paper this article is summarizing:
By embryogenesis, the biological bases of two subtypes of ASD social and brain development - profound autism and mild autism — are already present and measurable and involve dysregulated cell proliferation and accelerated neurogenesis and growth. The larger the embryonic BCO size in ASD, the more severe the toddler’s social symptoms and the more reduced the social attention, language ability, and IQ, and the more atypical the growth of social and language brain regions.
This is not making any huge logical jumps that I noticed. All it's saying is they found a strong correlation. And the researchers seem to be well aware that there are still dots to connect. In the limitations section, it explicitly points out more-or-less the very thing that the researchers are being accused of not thinking about in this HN thread:
The genetic causes and cellular consequences of decreased Ndel1 activity and expression correlated with ASD BCOs enlargement remain to be specified. A limitation of most previous ASD patient-derived iPSC-based models is lack of within-subject statistical linkage of ASD molecular and cellular findings with variation in ASD social phenotypes. Without this, future ASD iPSC reports will continue to have limited impact on our understanding of the genetic, molecular and cellular mechanisms that cause the development and variation in the central feature of ASD: social affect and communication.
Which brings us to an important thing about interpreting popular science literature: it's unwise to assume that what's in the popularization of the research accurately reflects everything the scientists who published the work think or know. Attempting to eliminate these kinds of details is one of the primary goals of science journalism. For better or for worse.
https://molecularautism.biomedcentral.com/articles/10.1186/s...
As readers of this article we can fill in the blanks and imagine that there might be a well-understood and well-founded way to extrapolate observations of these BCO samples to fetal brain development, but we can equally well imagine that this extrapolation might be tricky or unreliable. So as lay readers we're left to guess which mistake the author made: did they overstate the conclusion based on a bad assumption, or, after already explaining so much about the research and connecting so many dots for the reader, did they forget to explain why we can confidently draw conclusions about real fetal brains from these in vitro models? Obviously the second is more forgivable, but it's annoying either way.
As for large putative effect sizes this is often due to subtle batch processing differences between cases and controls. Where they all processed by the same tech in an interleaved way? All stored in the same way over this very long duration study? Authors do discuss batch controls but with single digit sample sizes I regard statistics as fundamentally unreliable.
I am also not convinced by the claim of any over-proliferation of neurons in autism during development. It is certainly a highly controversial result. See notes above by “subiculum…” and the Li et al paper he cites.
Like they said, the effect size is large. With a large enough difference, you can distinguish the effect from statistical randomness, even with a small sample size.
As with any study, this result must be replicated. But just waving around the sample size as if every study can be like a live caller poll with n = 2,000 is not helpful.
For my part, the statistician in me rather likes methodologically clean controlled experiments with small sample sizes. You've got to be careful about how you define "methodologically clean", of course. Statistical power matters. But they've probably led us down a lot fewer blind alleys (and, in the case of medical research, led to fewer unnecessary deaths) than all the slapdash cohort studies that we trusted because of their large sample sizes that were so popular in the '80s and '90s.
Huge sample size, but all food intake is self reported, or a tiny sample size where test subjects were locked into a chamber that measures all energy output from their body while being fed a carefully controlled diet.
The later is super expensive, but you can be pretty confident of the results. On the flip side it also miss any conditions that only present in a small % of the population.
You can see this with larger dietary studies where out of 2 cohorts of 100 each doing different diets, 15 or 20% on each group does really well on some "extreme" diet (e.g. Keto) but the group on average has no unexpected results.
If your sample size is 5, it is quite possible none of your test subjects are going to be strong responders to, for example, keto.
So then the study deadline comes out "Keto doesn't work! Well controlled expensive trial!"
Meanwhile the large cohort study releases results saying "on average Keto doesn't work".
But in reality, it works really well for some % of the population!
Some non-stimulant ADHD drugs have a similar problem. If a drug only works for 20% of the population, you need to be aware of that when doing the study design.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8583264/
I recognize the Catch 22 that the diagnosis is not possible until several years after birth. But a prospective study of this sort is “in scope” at UCSD. They already have big MRI studies of kids with hundred or even thousands of scans.
It seems you have an issue with that the researchers reached this conclusion from experiments with what you call “some odd organoid derived from blood cells”. I’m not an expert so I wouldn’t know if that is a valid way to make the conclusion but once they do it seems the summary in the article is correct.
What do you feel is wrong with the article and what do you feel is flaky with the research?
Autism spectrum issues are associated with overgrowth and then deceleration more than normal. This seems like a hyperexperimental version of it. Still interesting and good to see corroborating evidence, also useful as a model for therapies and other things.
A huge weakness in autism neuroimaging research is the un-representativeness of their samples. Nearly a third of individuals with autism have severe intellectual impairments (IQ's < 70) yet represent less than 1% of neuroimaging samples. Individuals with other immense behavioral, sensory and language challenges are also rarely make it through the rigors of imaging protocols.
A rare exception has been imaging research that performed brain imaging in very young children during natural sleep. and thus can hold still enough for quality MRI images to be acquired. This has allowed imaging of autistic children aged 2-6 years to include autism over a whole range of severities, challenges, and intellectual abilities.
This presents a problem though. The research that suggested there is brain overgrowth in early childhood sampled from a wide range of autism phenotypes and severities, while the normalization evidence in adolescents and adults came from autistic participants with normal ranged IQs and less severe challenges, a clear cross-sectional sampling bias that threatens the validity of the overgrowth normalization story. Moreover, research indicated that disproportionate brain size in autism was associated with slower intellectual improvements with development.
I and my colleagues thus hypothesized that the discrepancy would be removed if we can follow the same children from childhood into adolescence longitudinally. Using a number of behavioral techniques and a lots of care and dedication, our team managed to acquire brain data in a broad spectrum of autism phenotypes and severity levels from early childhood into early adolescence.
We reported the results of our study in Biological Psychiatry Lee in 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8089123/ (open access).
Our conclusion: Longitudinal evidence does not support the notion that early brain overgrowth is followed by volumetric regression, at least from early to late childhood.
Now if we can just find the grant money to get the DNA sequences read for all those samples...
But, I wonder if it is at all related to Neanderthal lineages. They had bigger brains and were basically autists: the species. Since we are a bastard of them and early Sapiens, maybe some of us present with more of their genome than others?
And it seems that the prevalence of autism is actually fairly even, but might actually be lower among white people.
https://www.cdc.gov/ncbddd/autism/addm-community-report/spot...
You would also expect autism to be nearly completely absent in Africa, East Asia, and native Oceania and North and South American populations.
I’m not an expert, but I don’t believe any of that is true.
It’s a fun “theory” but it doesn’t survive even casual analysis.
(I don't know whether that's the case or not.)
Neanderthal genes have had a long, long time to do so.
(Note the key "favourable")
(IIRC this is why Asians have straight hair.)
I posit that the "runtime environment" i.e. epigentics, among other things, has a far traceable cause than the smidge of related species. The nature and consequences of autism land me to believe that it's more likely a consequence of a compiler error, although shoddy source code could be a secondary/compounding cause for it. Take Down's Syndrome as an prime example of genetic disorder, and it becomes clear why such categorization does not work for autism: autism is too broad, it describes the effect rather than cause, and I'd argue that autism is far less debilitating (pronounced) and definitely not inherited.
Autism being "too broad" is why it doesn't have a genetic cause?
Autism's nomenclature not being descriptive enough is why it doesn't have a genetic cause?
Autism not being as debilitating as DS is why it doesn't have a genetic cause? (developmental logic aside, are you familiar with Type 2 and Type 3 autistic individuals?).
Extra dings for not for over-use of CS analogy, "unwarranted fixation", and "we no longer live in the world".
Analogies aside, they were arguing it is a mix of genetic and epigenetic factors and that, generally, we only pay attention to the genetics.
https://en.wikipedia.org/wiki/Epigenetics_of_autism
I think the real problem here is this can potentially be a politically heated take. I don't believe it is in this case, or they were making an effort to not make it so. Of course, that is just my reading of it.
There are ideologues who like to police others in every divergent group that falls in a normative IQ range. Try going to a deaf sub and happily announcing your pending cochlear implants (don't do this).
One might imagine how this may be worse in the autism group.
Heck, observe how politically oriented "totally normal" types at Psychology Today pretend to lecture the autism community on the only acceptable way to think of themselves. They're obsessed with the topic, and it'll change only every few years if lucky.
It's pervasive and annoying.
Humility favors the first. Pride favors the second.
As Satan famously says in "Paradise Lost", "The mind is its own place, and in itself can make a heaven of hell, a hell of heaven." It's not an accident Milton puts those words in the lips of that particular character.
#aspergers guy: Haha scalpel go brrrr
This research has a very small sample size (n=31)
Also indicated by the scatter plots too.
From the research: “total of 10 toddlers with ASD and 6 controls ... In a 2021 batch, we measured BCOs from 10 ASD and 5 controls.“
https://www.researchgate.net/publication/380876463_Embryonic...
I haven't read the paper yet, but if its like what our team is doing, we take blood, and turn the cells there into neurons, then organoids.
however, then correlating the consistent organoid attributes back to attributes of a small parent sample group is weaker on small sample groups than larger ones. here the parent group is tiny… and the severe ASD sufferers is even smaller (n=2 or 3 by my understanding)
great foundational research! but surely larger group sizes are required before correlation is confirmed
This theory, especially if the outcome is effectively random bias in cognitive development, would fit that.
They are not our superhero abilities and they often come with extremely debilitating consequences.
I know many people on the spectrum and they suffer.
But that's not really any different from how people vary from one another in general. It just so happens that the way in which I vary is shared with many others and has a name.
I'd say the same about ADHD. I don't know if I have ADHD, specifically, but I certainly have some form of related executive dysfunction. It makes it very hard to focus on something tedious (I spent a solid hour trying to type up a few paragraphs of interview feedback for someone earlier while getting constantly pulled off onto other things). But it also means I temperamentally have to constantly be learning and growing because I'll wither and die if I don't. That has made some things (like doing repetitive daily tasks) hard, but it makes other things (like the fact that as a founder I have to do about seven different jobs at a time) fun and easy when they would crush many people.
I agree with you that we don't need to pretend that things that hurt us don't. The difficulties matter, in part because acknowledging and understanding them is a part of finding our own personal brands of excellence. But I also don't think we need to treat the ways in which we're different as a curse, either. It's just how we are, and we have to figure out the best way to live within those constraints, the same as anyone else. Sometimes that means tolerating the things that we can't change, sometimes that means routing around them, sometimes that means figuring out ways to make them work in our favor.
I can't speak for everyone, but I can say that my life has gone far better starting from the premise of "this is the way I am and I have to work with that while recognizing the realities of interacting with a world that operates on different rules from mine" than it has from the premise of "I'm broken and I need to fix myself so I'm like others". In that sense, I think that acceptance, and even celebration in the right ways, can be good. It's just a way to say "it's not wrong to be what you are, and you should try to be the best version of that thing, not the best version of someone else".
One may accept without either self-hatred or celebration. This is the way things are, this is what there is. No need to embellish either negatively or positively. I think either path leads to poor outcomes societally.
I might sound like a stoic, but I am definitely not one. The reason is that I spent a lot of my life trying to pretend I was above my emotions, unperturbed by such forces in my higher realms of logic. This...uh, wasn't true. I was feeling as much as anybody, and my actions were being guided by my feelings as much as anybody. I just wasn't listening to my feelings or aware of how much they were dictating about my life.
Emotions are as essential a part of a person as cognition is. The Universe doesn't prescribe any particular things as good or bad, praiseworthy or evil, interesting or boring. In the world of pure logic, there is no difference between me deciding today to not drink any water and dying in a few days versus me living a long, full life of rich goodness to my fellow man.
The problem is not having emotions, but confusing them with beliefs. Emotions aren't there to tell us what's a good idea, they're there to tell us what's a fun one. Both are important. So we use our reason and our emotional regulation to make better decisions about how we may have the most fun (where "fun" here is standing in for whatever broader notion of personal utility you might choose). Even the literal Buddha was pretty clear on the idea that there's not much value in depriving oneself of one's human pleasures - only in not being controlled by those impulses.
And I would say that taking satisfaction in the positive traits you have is a pretty basic human pleasure.
One can reason their way through a lot of things, even a lot of the why's of emotion over time. To recognize when you are going into a state of reacting on emotion over reason. It's hard.
My daughter faces a lot of similar issues and it's harder for her than it was for me. The best I can do is try to instill a sense of drive to adapt and overcome as opposed to just giving up and/or wallowing in things. I wish my parents were better equipped to do this for me. I was close to 40 before a lot of things started to fit together. A few years ago, working with someone that had similar personality issues dialed to 11 so to speak that a lot of things became much more clear.
Being on the ND spectrum (and having been through the ringer of medical professionals, with god knows how many diagnoses) I know I have a different set of tools in my toolbox and I have painstakingly found my "niche" where I excel, and have worked hard to strengthen my weaknesses.
That's not to say I haven't seriously considered killing myself numerous times in the past due to foreseeing how hopeless and painful my life was to be. But that was primarily the trauma, and its effects on my executive function and the inability to adapt to my unique circumstances (ADHD being one).
However, I'm not blind to the fact others are not as lucky as I am to be able to have not only some semblance of free will and favorable circumstances to exploit to the best of my ability. Others are less fortunate, but I have to ask what portion of that (debilitating consequences) is simply a helplessness bestowed upon them from repeated trauma and a lack of favorable environment? I believe a good portion would fall under this camp. Ergo, their unique physchological makeups have not found an environment that fits.
I think this is similar. Literally everything we pathologize around mental health (that isn't a direct deficit) is "normal at lower intensities"
I think it's more a matter of degrees than a wholesale one view vs the other.
well, since a pathology is a negative, there's little chance they'll become positive. We shouldn't pathologize all differences.
Even despite that, I still find the idea hopeful and worth discussing. Whether something should be considered a strength or a weakness _does_ depend, at least in some cases and to some degree, on your perspective and actions.
Some superhero fiction even covers this aspect. A quite interesting example would be One Piece, where a number of people ate a special fruit that gave them superpowers, but they lose the ability to swim. Since the world is mostly ocean, that's a huge deal, and the main character is initially depressed about having made that trade, until he learns to appreciate his new powers.
So I guess this neurodiversity-is-a-super-power narrative can be both be bad (proper help and understanding is denied) and good (e.g. increased self confidence).
I don’t think your parent was doing that. As I understand this theory is that societies which take care of their disabled have a survival advantage over societies that don’t. Even though diversity is debilitating to the individual, it still benefits society as a whole.
A short description of the mechanism could be something like: Variability is the raw material for evolution through natural selection. Having a high cognitive and behavioral variability offers greater opportunities for societies to benefit from natural selection. Societies which take care of neuro-divergent individuals have a greater cognitive and behavioral variability.
There are likely many genetic and environmental factors that all contribute to ASD. A gene that is generally helpful, even if debilitating when paired with an unlucky combination of other factors, might still be very strongly selected for. Some people on the spectrum deeply suffer, but for every such case there are many more moderate cases, to the point we might not even recognize them as being on the spectrum, that can be very successful under the right circumstances.
That kind of perspective is narrow to the current human environment, which is not permanent. We're living in a tiny infinitesimal speck of the spectrum of the whole biological timeline of earth, let alone entirely different planets we might someday inhabit. Her constant worry and distractedness might be disadvantageous in a world that requires you to concentrate on unstimulating tasks and in which the threats you see yourself surrounded by are largely imagined and extremely unlikely to be realized. But that is because we currently live in a society of laws and stability, presumably somewhere near the height of civilization. There is no guarantee it will always be this way. When shit hits the fan and the threats get real, my perfectly well adapted to the current world self who fixates for days at a time on narrow tasks, pays little attention to surroundings, and worries about almost nothing, will get killed off within days if not hours. It'll be up to people like her and you to give humanity a chance to make it into the far future.
This is why we need diversity. Because even if it sucks to be you who isn't well adapted to the current moment, the current moment is short. It doesn't mean you're a superhero. It just means we have no idea what sorts of traits and behaviors might keep us going under drastically different future pressures and we may as well keep as many different traits around as possible just in case.
It impacts everything: healthy regulation of emotions, satisfaction in relationships intimate and platonic, frequency of damaging behavior like substance abuse, and addiction to novel sensory media.
It's novelty-seeking that is broken, that's all there is to it. We are lucky medication is available. Others who struggle with other mental pathologies are not so lucky.
Self-hatred is not the answer. So is any attempt to make it a virtue. You can just be with the acknowledgement of a maladaptive state.
Also quite frankly just about everyone suffers in one way or another. How do you know your issues were more than average?
As with ASD and neurodivergency at large, ADHD is a spectrum, with differing impacts for differing people.
I think the concept pairs really well with the idea of social selection as a derivative of natural selection in which social structures create natural divisions in a population's gene expression to disfavor traits that don't benefit the population even if they benefit the individual.
Can you please explain what you mean by this?
seems a decent summary
Being a neurodiverse, or more commonly known "on the spectrum", is a guaranteed way to get bullied (or worse) by your peers who are not. How is that supposed to help with survival?
Some neurodiverse kids and even adults get bullied so hard they commit self termination (to avoid using the 's' word). That's exactly the opposite of helping with survival.
Helping with survival to me means having features that help you get accepted by the heard and with finding a mate to reproduce, not features that get you shunned and outcasted till you end up wirtten off the gene pool.
Is it? Hardly. I have been diagnosed, but was never bullied. I don't bully my neurodiverse peers, and I think new generations are, in some cases, more kind than our predecessors in this particular area.
I think unkindness towards neurodiversity is a particular facet of particular societies, and not a general aspect of the human organism.
Well, human life doesn't begin and end with school and bullying, nor was bullying like that necessarily as much of a thing in other eras (or other cultures), especially since we're talking prehistory.
It's easier for someone with ASD to have social relations and be accepted when everybody is part of small tribe or village and sees each other everyday for example - like for most of human history.
Also for the most part of history "being cool" wasn't really a preoccupation of people, even kids.
>Helping with survival to me means having features that help you get accepted by the heard and with finding a mate to reproduce, not features that get you shunned and outcasted till you end up wirtten off the gene pool.
It can also mean having traits that benefit the tribe, like problem solving and inventing things (or as researched regarding ADHD, "be better at hunting"), even if you're not very socially adept.
https://www.wired.com/story/autism-ancestors-evolution/
In many cultures even the "mad" were respected - considered touched by the spirits, samans, etc. Not just some ancient tribes either, all the way to modernity, including in aspects of Christianity ("holy fools").
Schools as a concept are a relatively new thing, historically speaking. Most children outside of those recruited by/given to the clergy used to be homeschooled, either by their parents or for privileged families by dedicated servants, and when they were of age, they went to trades training or the military. And that was fine, because most jobs were manual labor and didn't require a lot of actual knowledge - not even the ability to read and write, literacy rates were abysmal in the utter majority of the population [1]. Side note, that was also why religion got so entrenched - oftentimes, the local clergy were about the only people in town that were actually able to read the Bible and to speak/translate Latin. That gave them a loooot of power.
Only at the beginning of industrialization came the realization that societies and economies needed at least some common basic standard set of knowledge and that homeschooling could not provide this, so schools were introduced for efficiency reasons.
[1] https://www.weforum.org/agenda/2022/09/reading-writing-globa...
Just my own take on this.
One aspect you're discounting is obsession. Imagine the stereotypical person who knows everything there is to know about trains. Now imagine they were born a millennia ago and focused instead on the weather or soil or logistics or taxes. I can see that being quite valuable, not just to the individual, but to society around them! Value can drive success (particularly if you obsess about it), and success is attractive.
As an extreme example, Elon Musk is autistic. I'm positive he got bullied in school, but I'm also sure he has more kids than you and me.
We don't get to have variation without also having the potential for too much of it.
Welcome to the messy stochastic search algorithm that is online approximator for Causal Entropic Force.
[1] Article [2] https://medicine.wustl.edu/news/in-autism-too-many-brain-con...
That’s why autistic people like to do repetitive behaviors (it’s easy to predict the outcome), don’t like change, and so on. It’s why autistic people tend to be highly sensitive to certain senses (loud noises, bright lights, touch). And it’s why they struggle in social situations-there is too much complexity to process it and decide what to do.
The research about too large brain size and too many connections seems consistent with this, being a physical explanation for these effects.
Edit: sorry, wrong chat
It's not 'normals' that shake and bake society. It aberratics that do.
In other news, I have a big head and as a kid my older sister would bully me and call me "King Tut." She would also mock me by pointing out my long eyelashes and say, "You know, in ancient Egypt, long eyelashes were a sign of beauty in men." She was 10 or 11? Anyway, we're close now. I just wanted to share what bullying is like in an extremely dorky family.
It was a mix of movie and book trivia, but even if it had been all deep cut Silmarillion stuff it would have played out the same way. I can now never forget about the Uruk-hai Lurtz, invented for the first movie.
Put differently: Autism is not something to be managed away.
> I don't think anyone who was somehow given the choice of autism or no autism at birth would choose autism would they?
I test in the statistically-likely range for autism on multiple diagnostic tests, though I don't carry a diagnosis from a psychiatric professional, so grain of salt, etc; but I find this kind of hypothetical offensive and degrading. It rings so much of how we approached queer identities throughout the years: blindly assuming that because wider society has difficulty interacting with autistic or otherwise neurodivergent people that THOSE PEOPLE would prefer to be like those more neurotypical members.
I like my brain. I don't want it to change. I don't want to be different. I don't want to be treated as someone suffering some condition, or like there's "tradeoffs" in my experience of the world that're any more significant or worthy of commentary than anyone else's experience of the world.
I wouldn't wish real autism on my worst enemy.
Unfortunately, I feel like the autism community's search for acceptance often puts on blinders to such individuals. That is particularly frustrating because those vocal about autism acceptance often do it while castigating therapy as if it's always a horrible thing aimed at hiding their true selves. We are working as hard as possible so that our child can hopefully advocate for themselves when we are worm food. If that means "breaking" their true selves to teach them to communicate (speech therapy), or using behavioral therapy to get them to brush their teeth (even though they hate everything about it), so be it.
I get why the DSM widened the definition, but what it means to have severe autism is very different from what it means to have mild autism. If my child has deep thoughts, they have very little ability to express them.
I'm sympathetic to much of your comment, but the "if" in this sentence really made me wince. Seems to me there's a lot of evidence that almost everyone with autism (including those with very "severe" autism) do indeed have deep intelligent thoughts and just can't communicate them (i.e. that autism is primarily a sensory disorder rather than a cognitive one). The best example I have of this is someone who was entirely non-verbal their entire life, but managed to write an entire book when taught to communicate via pointing at letters on a printed "keyboard" (perhaps someone else can find the reference- it was on HN a few years ago)
Which also points to something which I think is really key to helping those with autism: that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively.
That might mean writing instead of speaking. Or using mouthwash instead of brushing their teeth. You might well have tried all of these kind of things, but if you haven't then please consider it!
I find the practice abhorrent and somewhat abusive.
https://www.facilitatedcommunication.org/blog/clever-hands-s...
This is a true statement because almost everyone with autism does not have severe autism.
Like, I'm sorry, but the research I've read about autism does not paint such a rosy picture about the intellectual capabilities of kids with severe autism. That doesn't mean I'm going to treat my kid poorly because there are cases of kids with severe autism and no intellectual disabilities. That, however, is the exception and not the rule. Severe autism is very frequently accompanied with intellectual disability. [1]
I've read the same books authored by kids with no verbal communication. I've heard the stories of lawyers with severe autism. However, those are the exceptions. I certainly hope my kid is one of those exceptions, they are on border of severity which gives me a lot of hope. However, I do have to accept the fact that the most likely outcome for the rest of their life is needing support. It's a fact I've come to terms with over their life as improvements in communication have slowed.
> that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively.
Sorry, but this severely misunderstands what we work on. It's not about doing the "normal" thing. My child, for example, has extreme food aversion problems. They have a very limited diet which ultimately is not healthy. We do food therapy because expanding their diet and tolerance to eating foods in non-preferred ways is super important. They attend school and unfortunately if the wrong aide is in charge of setting up their meal, they will frequently simply go hungry.
I'm not working on "normalizing" my kid. I'm working on getting my kid to be able to advocate their needs and to be self-reliant as much as they are capable.
> That might mean writing instead of speaking.
Already working on that. They have an AAC device and have been to therapy to learn how to use it for the last year.
> Or using mouthwash instead of brushing their teeth.
Or sedating them when they inevitably need to have cavities drilled? You can't replace brushing your teeth with mouthwash. Feel free to ask your dentist if that's acceptable on your next visit.
[1] https://www.verywellhealth.com/what-is-severe-autism-260044
100% agree. It’s not something you want. I’m completely over being polite to the people who spout this “I have the symptoms but no diagnosis” line then try to speak about it.
Most undiagnosed child Asperger's, which turns into undiagnosed adult Asperger's, will never be diagnosed by the individual nor a professional. There's a lot of it out there.
My main reaction is due to all the undiagnosed people who swear they have it and attack me for giving my son the help and treatment he needs. It’s an ongoing issue, stemming from ignorance on their part. Hence my lack of patience or sympathy any longer.
A large part of the neuro-devergency community is not fan of the Asperger’s term. The primary reason is that the distinction between Aspergers and Autism was based on outdated—and frankly, problematic—believes around IQ.
The term Asperger's was simply a holdover from the man who brought the condition to light. Period. Anything else is inference, and I hold with malice.
See the fact that the new categories still imply a categorical difference and there is therefore still a categorical difference. In fact, the difference between autism categories is generally massive. Whether or not that difference includes IQ would be down to the individual, but often it will. The term Asperger's having nothing to do with it.
What they didn't like was the implication that Asperger's isn't tightly connected to the other autism categories. It may or may not be. They don't know, either. The renaming was a weird point of focus and highly political. What is true is that almost anyone would have a difficult time observing that Type 1 autism (formerly Asperger's) bears any resemblance to Types 2 and 3.
Wikipedia has this to say:
> Disagreements persist about what should be included as part of the diagnosis, whether there are meaningful subtypes or stages of autism.
And cites a paper [1] claiming:
> The elimination of subcategories was controversial for various reasons, including concerns over the removal of an important part of an individual’s identity and community, specifically related to Asperger’s disorder, as well as concerns over losing services due to an individual no longer meeting more stringent diagnostic criteria. However, the evidence for the existence of subcategories within ASD has continued to be very weak (Miller and Ozonoff 1997, 2000). Furthermore, the shift from multiple subcategories to a single dimension resulted in improved diagnostic specificity and good diagnostic sensitivity, with over 90% of children with PDDs meeting DSM-5 ASD criteria (Huerta et al. 2012; Mandy et al. 2012), and with the remainder likely captured by the new social communication disorder diagnosis.
It looks to me that if they would have kept multiple categories, that would have been a political decision (in particular, identity politics for thous which identify as Asperger’s). It seems like the current single category / multiple dimensions has proven it self to be a much better approach for diagnostic. That is evidence suggest this is a successful change, with both autism advocates and psychiatrists preferring the current single category approach.
These severity levels do not specify intellectual impairment, only social communication impairment and restrictive and repetitive behavior. Intellectual impairment is specified as a boolean with or without. So basically—as I understand it—what was previously described as Asperger’s is basically Autism spectrum Disorder with this boolean set to false.
I actually went ahead and did some further reading and it turns out that people (both psychiatrists, researchers, and autism advocates) are very happy with this arrangement. Intellectual impairment does not correlate (or correlates rather barely) with other required specifications of the disorder (including impaired social communication) and the accommodations required are vastly different.
ICD-11 has 8 subcategories of Autism Spectrum Disorder, and what was previously called Asperger’s is probably 6A02.0 - without disorder of intellectual development and with mild or not impairment of functional language. (pp. 36)
Note that psychiatrists and researchers alike are no fans of the ICD-11 approach, claiming things like:
> As ICD-11 defines ASD in a broad constellation of symptoms or behaviors that can hardly be differentiated from other mental disorders and autism-like traits, the risk of false positive ASD diagnoses increases significantly. This will lead to further limitation of access to ASD-specific services for individuals with a true positive diagnosis of ASD and likewise disadvantages individuals with a false positive diagnosis of ASD due to delays in access to or even missing out on disorder-specific care (e.g., dialectical behavior therapy for borderline personality disorder). Further, since ICD-11 draws particular attention to high-functioning (adult) individuals with ASD, there is concern that “prototypical” as well as low-functioning cases increasingly become neglected in research and clinical practice. [3]
1: https://iris.who.int/bitstream/handle/10665/375767/978924007...
2: https://www.autismalert.org/uploads/PDF/INFO--DSM%205%20Diag...
This was in the UK though.
Also—since I talking about this—I think many in the neuro-divergence community don’t like High Functioning Autism either (and it is not included in any of the diagnostic tools anyway). The reason cited is that it is rather ableist to call it “high functioning” and would much rather focus on the specif disabilities which needs accommodating.
I was reading about HFA, and I don’t think that exists in the diagnostic tools either. I think the focus instead is to just diagnose people with autism spectrum disorder and then enlist the disabilities which needs accommodating. The more sever cases has a larger set of disabilities. I’m guessing you would have had a pretty limited set.
I think this is the right choice as there is a little bit risk of ableism in separating a disability as high functioning. The reason we give diagnostic is that some people need accommodation for their disabilities, being accurate about which sets of disabilities need accommodation is better in every way, as opposed to a blanket term like high functioning. The term also risks people perceiving some superiority (intended or not) when it is referred to as such.
Of course you are free to disagree with people who’s actual job it is to diagnose autism. But I don’t see what that brings to this conversation.
As far as I know there is no solid evidence he was involved in that, though there seems to be evidence it did happen.
The problematic beliefs I was referring to was the notion of high IQ. IQ is a very controversial term in psychology, and has a very problematic history. Even though it was initially conceived exactly for the purpose detecting individuals which may have learning disabilities, it has since grown into something which was integral to the eugenics movement. Today we know that IQ has some racial and class biases which we should probably avoid when creating taxonomies which are then used to describe people with disabilities.
Kranner also intentionally set up his referral network to filter out the lower end of the spectrum of cases, such that he missed what Asperger has correctly identified before him: that is, that it's a spectrum.
Being a spectrum means that there is an extreme end where things are really, really difficult. I'm sorry to hear you're experiencing that, but that's not to say the spectrum isn't real or there hasn't been a battle to get to the point of recognizing that it exists.
As to the GP's comments specifically, NeuroTribes provides a lot of evidence that searches for autism "cures" have almost universally hurt autistic people, and I mean this is a very practical, and frankly horrifying, sense, not in the "my feelings are being hurt" sense. The piercing irony of a lot of these cases was that Kranner's own follow up to some of his methods indicated that his own techniques were actually making children's lives worse, not better. Some of the children who did the best were frankly just left alone---which says a lot about what we've done for them.
So, I don't know what the answer is, but I think it's worth being at least aware of the history, because a lot of it is frankly really dark.
Modern treatment and therapy are not focused on "curing" autism. It's pretty much all about building out life skills. It doesn't do that by slapping the kids for doing the wrong thing.
For example, part of my kid's therapy has been around tolerance for brushing teeth. Are you seriously going to try and argue that my kid would be better off if they never went through that therapy? Even though they can now tolerate teeth brushing and even having the dentist poke around in their mouth.
Autism is a spectrum and so are the therapies for it. Certainly, kids with more mild forms of autism don't need as much therapy, but it's really frustrating to see "Look at the time a guy tried slapping kids with autism, all therapy is this bad".
In the short term it looks successful, in the long term it's the reason why meltdowns even exist and why so many autists unalive themselves.
I was an extremely autistic kid, barely able to exist in regular school, constantly hitting my head against walls, often nonverbal or having meltdowns.
To teachers, parents, caretakers therapy seemed to "fix" me, but it didn't, it caused even more trauma.
In reality, I didn't need fixing. What truly helped was an environment where I can manage how much stress I experience. Where I can take a quiet break whenever I need to.
20 years later, as an adult, I'm living a genuinely happy life, because I'm not forced to live according to a neurotypical schedule anymore.
The first several years of schooling are really just teaching them to sit still, listen, and do a bunch of work you hate instead of playing.
That’s breaking their spirit but it’s essential for them to become adults
Perhaps you can appreciate that 20 years is a long time and therapy/medicine has changed a lot since then.
I'm really sorry that therapy was terrible for you. That sucks. However, you do need to realize that not all therapy is ABA and that ABA itself has changed substantially in the last 20 years. A lot of the therapy that my kid gets has built in breaks for the kid to make sure they aren't overwhelmed, there are certainly days when the session is basically "we couldn't do anything today because your child seems overwhelmed".
School is also different. My kid's school has a dedicated room for kids to volunarily go to when they are feeling overstimulated. Most IEPs (US) provision that for kids primarily in general education they get pull outs as needed if they are feeling (or appear to be) overstimulated. My kid wears headphones most of the day because noise bothers them.
The goals of my kid's therapies are life skills, Communication and personal care. We aren't trying to make them not autistic, we are trying to make sure they can brush their teeth and dress themselves. Do you really think those sorts of therapy goals should be abandoned?
Yes, some people are hit real fucking hard, some of us improve into adulthood, some of us don't get hit that hard in childhood but suffer more as adults.
You don't get to decide what real autism is, especially as an outsider, and excluding people who have that diagnosis is shitty, petty behavior. Grow the fuck up.
Tradeoff is such an intrinsically correct term to use here. People with autism/adhd are worse at some tasks, and better at others. That’s what a tradeoff is.
There are similar discussions around deafness. Deaf people often don’t like to see their deafness as a disability, but as something that defines their culture and experience. That’s still a tradeoff. You can decide to give your child cochlear implants, and integrate them into mainstream schooling - or you can opt out of that, and integrate them into the deaf community. That’s the very definition of a trade off, and it’s a very valid and difficult question.
The issue I have with your take is that its adoption can reduce people’s feelings of agency around their way of life. What works for you isn’t necessarily universal. The idea of a tradeoff is that the same decision can have different meaning to people in varying contexts. You might suggest that people have been conditioned to want to be ‘normal,’ but that is an oversimplification that ignores individuals’ agency, and again, unique contexts.
The main exception seems to be deaf parents of deaf children, but I don't know what the data says about what they usually choose.
> You can decide to give your child cochlear implants, and integrate them into mainstream schooling - or you can opt out of that, and integrate them into the deaf community.
I feel almost lucky - sure, life has sucked and I’ve missed out on so much, but I have a few things that really get my juices flowing and I feel bad for those who don’t. One of those things is currently in demand by society, and I am happy to take their money in exchange for software that came from my brain.
Edit: thanks for that link, I’d never heard that term and I like it.
Maybe you can go about daily life and relationships with no major hurdles, but plenty of us have gone though a lifetime of suffering to barely scrape through daily life on our own. Even more cannot live an independent life and require a caretaker forever. Some can't talk, can't feed or dress themselves.
I don't think it's necessarily wrong for people to say they are autistic and would stay autistic given the choice. I don't think it's wrong to say the opposite. I get much, much more uncomfortable when that choice is external. If my parents knew I would be autistic, they would have aborted me. I think I've been a force for good in the world even with my trauma. I dunno, that makes me sad to think about.
As someone with an autistic niece, it seems very much a condition that requires management
Our options aren't just "cure", and status quo. We can choose to adapt in other ways.
> If we structured society to provide that management and support, would that change your opinion?
And even then it's often uneven or comes with stigma.
> Put differently: Autism is not something to be managed away.
That's an abominable take. It only makes sense if you're willing to ignore the massive suffering and ongoing trauma.
I'll refrain from explicitly invoking Godwin but the comparison is obvious.
This isn't always the case, but much of the time the trauma is due to an ill fit rather than being inevitable.
An example of inevitability might be the trauma experienced due to unexpected deaths of loved ones. An "ill fit" needs no elaboration. The few people with autism who manage to succeed and thereby improve their environment seem to suffer less frequent trauma, if any unless it is of the inevitable type. And then, for example, would people with autism have such an unusually difficult time with loss if their support network wasn't so tenuous? Maybe, or maybe to some lesser degree.
I think that a reasonable starting point would be the question: if someone with type 1 autism could have everything that they wanted including socially, would they still want to change their nature? I think that responses would be mixed.
For example, take the young autistic woman who just underwent assisted suicide in the Netherlands. Does it seem more likely that her nature was fatally flawed or that her society didn't think to get off of its ass, sing to her in unison, and then make room?
Without my ADHD meds, I have ZERO ability to actually leverage the "gift" part...
> It's already hard enough for people outside of the USA to access treatment for things like ADHD when they want to
https://www.cnn.com/2024/04/02/health/adderall-shortage-pres...
> About 1 in every 10 people in the US who uses Adderall or similar combination drugs to treat attention-deficit/hyperactivity disorder (ADHD) has been affected by an ongoing shortage, a new analysis suggests.
> The US Food and Drug Administration announced that Adderall was in shortage in mid-October 2022, and the share of people with ADHD who filled their prescriptions for Adderall and related medications plunged in the following months.
> In an exclusive analysis for CNN, data from the health data platform Truveta shows that the prescription fill rate for amphetamine/dextroamphetamine medications fell from nearly 49% in October 2022 to a low of less than 41% in February 2023. Overall, the average monthly prescription fill rate was 11% lower in the first half of 2023 than it was in the first half of 2022, and it did not show steady signs of improvement through the end of 2023.
And yet, it's completely illegal for me to travel to Japan for even a day with my ADHD medication. I could be carrying my script, a letter from my doctor, and have literally only a single days supply, and I'd be risking a very serious prison sentence.
Outside of North America, even in places like Europe and Australia, ADHD is still close to non-recognised. Take Australia for example, if you assume 2-3% of the population has ADHD, and that every single one of them has to see a psychiatrist once a year to get their medication permit renewed so that their normal doctor can proscribe their medication (which is the legal requirement for ADHD in Australia), it would consume 2x the entire Australian psychiatrist workforce to deliver that many consultations... And that's if they were EXCLUSIVELY seeing ADHD patients...
> And yet, it's completely illegal for me to travel to Japan for even a day with my ADHD medication. I could be carrying my script, a letter from my doctor, and have literally only a single days supply, and I'd be risking a very serious prison sentence.
English language policy from Japan gov't: https://www.mhlw.go.jp/english/policy/health-medical/pharmac...
Scary US embassy page: https://jp.usembassy.gov/services/importing-medication/
Still, that page provides an email address. Try it with your medicine, and see what happens.
More from a US-based non-profit: "Japan Focus: ADHD and Traveling with Medication" -> https://www.miusa.org/resource/tip-sheets/japanfocus/
They recommend to ask in advance. If denied, skip it for the trip (I know how people will react on HN to that suggestion!) or carry an allowed alternative.
Your last paragraph feels like it was lifted from a non-profit that advocates for ADHD disability rights. It is incredibly specific. Also, I'm really tired of repeating myself on HN: Saying "Europe" doesn't say much. Europe is huge. It is (at least) 44 countries and 27 belong to the EU. There are huge differences between each country. Do you really expect us to believe that in the Nordics that "ADHD is still close to non-recognised"? I find it hard to believe.
Untreated ADHD itself is far more dangerous than any of the medications: high rates of mortality, suicide, addiction, job loss, relationship difficulties, car accidents, etc.
There is also some evidence that giving children stimulant medications for ADHD can make it less likely that they will continue to have ADHD as adults.
And you can't quit Intuniv without titrating off for a week or two or you'll feel pretty sick.
They are so unaddictive to people with ADHD that remembering to take them can be challenging.
Just watch your blood pressure, but you should do that anyway.
> Research has shown that those with attention-deficit/hyperactivity disorder (ADHD) have an increased risk for addiction disorders like alcoholism and substance abuse.
Wait, I forgot to take mine.
There have been studies done that show therapeutic doses of amphetamines over a multi-year period actually INCREASED the level of dopamine receptor expression in the brain.
It was by a very small amount, don't get me wrong (3-4%). But it absolutely debunked this entirely assumed theory that long term therapeutic amphetamine use would result in some kind of pseudo-addiction.
There are cases where drugs might be used, for teens with severe emotional problems or kids with seizures (which are common in people with autism). However, that's not what treatment looks like for everyone (or I dare say most people diagnosed with autism).
By and large, treatment for autism is centered around therapy. Occupational, food, physical, and behavioral are all common treatment routes for someone with autism.
There's no prescription drug regimen for autism.
There is nothing that treats ASD directly. But there sure are a whole host of charlatans that will try to convince desperate parents otherwise. As with pretty much every psychological problem the best we have is treatments to make the symptoms livable. Even what you mentioned earlier could be considered a treatment that addresses the symptoms not the underlying issue.
For some people, meditation and exercise only go so far. Shaming people/parents for needing medication and going with the "You just need to try harder" is what gets people killed. Medication isn't a personal failing.
Would be super cool if there could be found a way to enlarge the skull size during growth to have enough space for that special autism brains.
I'll pass, thanks.
It reminds me of trepanation, the old-school mental health procedure to just drill a hole in the skull. Some people still do it and swear by it [0], saying that it relieves pressure.
It’s not because of “skull pressure”
TIL that our heads grow by about ~8% (in circumference) after we're tweens [0]. Cool!
[0] https://www.craftyarncouncil.com/standards/head-circumferenc...
But I don't think it's a reasonable comparison -- autism has a much wider variability in how it expresses, from relatively benign (but still impactful) to fully incapable of self sufficiency.
I'd also argue just because we practice eugenics in case makes it ok to generalize to other cases (and furthermore, just because we practice it doesn't necessarily make it ok even in that case).
People abort babies for reasons far less than "lifelong disability requiring constant care". I'm not saying it's done lightly but surely that kind of issue is as valid a reason as any.
What we don't yet understand is the complex set of genetic interactions that result in ASD.
Here's one study: https://www.pnas.org/doi/10.1073/pnas.2215632120 but there are dozens if not hundreds more like this.
Your claim that ASD is not genetic is extraordinary and counter to the prevailing scientific understanding, and requires significant evidence to back up.
Just curious, would you feel comfortable if someone gleefully told you that from now on people like you will no longer be permitted to survive birth?
Putting aside that this isn't exactly "clear", you qualified this statement with "some" twice - ignoring the vast majority of other contexts where it is decidedly not an "advantage"
The choice of the word disease comes hand in hand with the desire to eradicate this. Then I just wonder how much tech we would actually have in this world, I think that everyone would be too busy out at parties to get anything done. Then everyone would be like the people in Bridgerton :) OMG!! Probably the state of technology would be about the same still as well :)
I don't think anyone who was somehow given the choice of autism or no autism at birth would choose autism would they?
I tend to form stronger empathy and justice models, and commit to them wholly. This has allowed me to, for instance, work on improving access to benefits or healthcare for others while other people around me burn out. But I often fight way too long, and I get upset when people disagree.
I often hyperfocus on projects I'm interested in and can produce a high level of output if given an interesting task.
I enjoy counting, categorization, and organization tasks. Find all bugs that meet these rules, or, double check every unit test to check we're meeting coverage goals. Give me those tedious, repeatable, rules based gardening tasks and I'll churn through them all day every day.
I believe I have a more systemic way of thinking than my peers, and while this does cause problems sometimes it also enables me to decompose systems more easily.
I tend to maintain my cool under pressure or bullying. I simply do not notice nor care about emotionally loaded conversations. This causes problems often but also helps often, I can mediate with "we're here now, let's focus on how to improve".
These, of course, are not the upsides of every autistic person. They are my upsides for me. Again, I am medically diagnosed and do require support to operate as an adult. My childhood was... not good.
I do not want to say it's only upsides, but I do think for some autistic people there are things those people do consider up sides.
Edit: if I could choose to not be autistic, even with the massive burden it has for me, I would choose to remain autistic and I would fight tooth and nail against anyone who tried to change me to remove it.
But it's also not clear what "being you but not autistic" would even mean, since it's an exercise in an imaginary hypothetical.
It turns out there are lots of groups who have greater than median barriers to access even basic care (trans folks, Black folks, immigrants, neurodiverse folks, disabled folks, etc). I happen to have a "I'll just keep calling and escalating until I've called every person in the company" attitude that doesn't seem to find that exhausting.
A strong sense of right and wrong, ability to use the outside lens on allistic societal structures, a rich internal experience, deep interests that actually give you something to talk about other than "the weather" and "the football" and gossip.
These can all, of course, be framed as downsides: difficulty acting immorally / being a bystander, tendency to confuse others in what "should" be formulaic social interactions, Theory of Mind® Deficit™ (#NotPseudoscience), "specific and limited interests" / deficit in "small talk" ability.
What does it even mean? You don't know what is going inside other people's head.
What I was referring to is hard to explain, but it is apparent after a few hours of observation and conversation. I'm not saying allistics are in some sense lesser,¹ but you can tell, when talking to them, that most allistics just… don't have anything going on between the ears except future plans, the occasional daydream, and worries about their positions in status hierarchies – that is, when they're not actively engaged in a task. (When they are, they can have insights into what they're doing as deep as anyone else.) Most allistics need to explicitly meditate in order to pay attention to anything beyond their narrow internal subjective experience – and, not coincidentally, most allistics who sing the praises of "meditation" and "mindfulness" actually have no clue what it is or how it works or even how to do it.
¹: Yes, I am being deliberately provocative. No, this isn't an acceptable way to talk about entire categories of people, but in my experience, most allistics don't notice what they're doing to other people until somebody does it to them. The Golden Rule is, it seems, a heuristic that they have to deliberately and consciously employ, rather than something they have an intuitive understanding of: undeliberated-upon allistic morality is "do unto others what your neighbours are also doing unto those Others". So: if this wording upset you, that was deliberate. I'm still sorry for it.
This obviously isn't true, since finding a partner and raising children doesn't neatly fall into any of those categories.
> “Everything in human life is really about sex, except sex. Sex is about power.”
It's salacious daydreams and status hierarchies! All the way down!
I do find it really hard to imagine how raising children could fit into these categories – I was figuring out how to word my concession on that point from the moment I read your comment –, but then I turn to my fiction books, and what do I find there? So much talk of honour, or parents projecting a desired future on their children, and such little mention of anything else except when it's actually happening. In the real world, too: how often do we see people hurting their children "for their own good", where the only possible good is to the future plans or social status of the parent?
I'm sure many allistics are capable of loving their children for their own sakes, but from what I've seen, it's not the norm: it's something that has to be learned, and actively practised ("engagement in a task"), rather than something that comes naturally to most. (And there's nothing wrong with that – provided that one puts the effort in. There is something wrong with being a self-absorbed, neglectful parent, too absorbed in the Proper Way of Parenting to let the village make up for one's own deficiencies.)
> people don't talk about the weather because they are super interested in the weather
Meteorologists do.
I get that small talk is a social bonding exercise, and that "the weather" is just a common example of an inoffensive, vaguely-relevant shared experience. I understand why people would default to this if they didn't have much else to talk about, and they felt an instinctive obligation to prioritise perceived inoffensiveness to society-at-large over the actual joy of the actual conversation participants.
I just don't understand why this limitation is considered a good thing. Surely people would prefer to talk about something they enjoy talking about, and hear about something they enjoy hearing about? The fact that people can't – or feel they can't – is surely a bad thing… or, at least, morally neutral. The downsides of autism are paraded around everywhere, yet the downsides of allism are, via Tall Poppy Syndrome, somehow transmuted into downsides of autism? Like, do people not notice they're doing this? Clearly not, if https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4296736/ (2006) is anything to go by.
It's not necessarily about winning a social power battle, but it can be used to discover what sort of person someone is so you can interact with them easier.
The suffering wasn't caused by my autism, but by society forcing me to behave in a way that was unnatural to me.
Now that I'm living on my own, able to shape my environment according to my needs, I'm not suffering anymore. I'm genuinely happy, and I've got a successful career in software engineering. And every day I experience situations where my autism helps me understand logical issues much more deeply, care for order much more (refactoring is <3), and allows me to speak out when needed.
Punching yourself in the face is a sign of unmet needs. Sadly, the usual response to something like that is to (1) restrain the person, then (2) not try to figure out those needs, much less address them. I don't make a habit of blaming caregivers, but if an autistic kid's punching themself in the face enough for it to count as a character trait, there have been significant failures at multiple levels.
I'll repeat that. Punching yourself in the face is not an autistic trait. It's a caged lion trait. Put an allistic kid in the right (wrong) situation, and they'll do the same.
Given autistics don’t even seem to have the same symptoms, severity of symptoms, or etiologies, and opinions on what treatment even constitutes, I also hesitate to make any strong statements about what may or may not be effective medical treatment for them. There’s a reason Americans research on autism has to use RDOC domains which at least gives some insight into specific symptoms and their severity so hopefully this heterogeneity problem which results in really bad treatment options and guidance for autistic patients will get better.
https://karger.com/neo/article/113/4/305/227927/Vitamin-D-an...
"the vitamin D-deficient infants have a greater brain mass than pups born to vitamin D-sufficient mothers, indicating impairment of appropriate neuronal pruning"
"deficiency early in pregnancy is more likely to affect brain structure during the period of organogenesis whereas the pruning of neuronal cells occurs later in gestation, so later deficiency would likely present with differences in brain size. "
That also dovetails with that Sweden study that autism is more correlated with vitamin D deficiency in the 3rd trimester.