Autism Should Not Be Seen as Single Condition with One Cause, Say Scientists
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Scientists argue that autism should not be considered a single condition with one cause, but rather a complex spectrum of different conditions, sparking discussion on the implications for diagnosis, treatment, and advocacy.
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In what reality would we be living if we listened to knowledgeable people?
Edit, since I can't make a post right now since HN thinks I've posted too much, here's some examples of technoracies:
"The former government of the Soviet Union has been referred to as a technocracy.[20] Soviet leaders like Leonid Brezhnev often had a technical background. In 1986, 89% of Politburo members were engineers.[20] "
"Many previous leaders of the Chinese Communist Party had backgrounds in engineering and practical sciences. According to surveys of municipal governments of cities with a population of 1 million or more in China, it has been found that over 80% of government personnel had a technical education"
"Since the 1990s, Italy has had several such governments (in Italian, governo tecnico) in times of economic or political crisis,[27][28] including the formation in which economist Mario Monti presided over a cabinet of unelected professionals."
"The term 'technocratic' has been applied to governments where a cabinet of elected professional politicians is led by an unelected prime minister, such as in the cases of the 2011-2012 Greek government led by economist Lucas Papademos and the Czech Republic's 2009–2010 caretaker government presided over by the state's chief statistician, Jan Fischer.[3][31] In December 2013, in the framework of the national dialogue facilitated by the Tunisian National Dialogue Quartet, political parties in Tunisia agreed to install a technocratic government led by Mehdi Jomaa."
"The Syrian Salvation Government, the predecessor to the Syrian transitional government,[33] was characterized by observers as an authoritarian technocracy"
https://en.wikipedia.org/wiki/Technocracy
Of course, it is always easy for a backwater to play catchup after someone else has already figured out how to advance. It is difficult to attribute that success to technocracy, and it is likely that any system could have allowed the same forward momentum, but the correlated track record is quite good regardless.
The USA flirted with the idea of technocracy around the time of the Great Depression. That is, perhaps, where the "bad record" idea has come from, but that's a pretty big leap.
Just as the king of england is the head of state yet not the source of power
The king of England doesn’t run Britain in any sense.
American oligarchs exercise more political power than he does.
the point being, official institutions are not always the strongest in the state, a state can be practically ruled by lawyers while having a functioning government
So by “running things” you mean person whose ancestors ran things. Q. E. D.
Your top comment does not describe “organizations ruled by lawyers.”
The british king example is how a country can evolve from one point of power to another over time, while keeping the existing institutions.
When imagining a system of government ruled by lawyers, I see it similar to an organization ruled by lawyers. In such organization/government the leaders are afraid of doing and thus are using lawyers as their excuse not to do anything.
Because of the vacuum of power, essentially the only policies actually being enacted are decided by the lawyers, which is whatever makes their job easier (minimum legal risk, minimum interpretations)
My point is you're not describing an organisation ruled by lawyers. You're describing one ruled by nobody.
It would be like me saying organisations led by engineers don't work because if I imagine an organisation where the engineers aren't actually in charge, but someone asks an engineer whenever they don't want to make a decision, it doesn't work.
But sitting back and doing nothing on the basis of their worry wouldn't fly in the real world. If such a hypothetical government existed, the leaders would have to act, else be quickly overthrown. Power is only able to be held if the people want to give it to you.
Can you provide any examples?
They’re not perfect, but frankly they humiliate the US in a lot of areas because the US system is too sclerotic to adapt and improve.
However there ARE questions that can be neutrally evaluated, or at least where neutral evaluation can narrow the field of reasonable decisions. Medical policy is replete with decisions like this, and so we really should be consulting experts and strongly listening to their decisions in this field.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9671112/
Which seems kinda strange. If we dont know the cause and the symptoms are entirely different then what makes it the same thing?
Like myocarditis or auto immune diseases.
They announced that Tylenol could be linked to neurological development issues, including autism.
That's what they said, which is fucking stupid.
The existing guidance is to discuss use with your doctor and to take the minimum necessary. It is not "fight like hell", ostensibly through fever and significant pain, to avoid it.
There is no good evidence to substantiate this belief, and if there were, then it'd be part of the guidance and we wouldn't need somebody who learned acetaminophen == Tylenol at 79 years old saying things like "Don't take Tylenol" on national TV.
The FDA decisions to update labels said:
>The U.S. Food and Drug Administration today initiated the process for a label change for acetaminophen (Tylenol and similar products) to reflect evidence suggesting that the use of acetaminophen by pregnant women may be associated with an increased risk of neurological conditions such as autism and ADHD in children. The agency also issued a related letter alerting physicians nationwide.
https://www.fda.gov/news-events/press-announcements/fda-resp...
This is stupid and bad, actually, and absolutely should be viciously criticized.
FDA's communication came after the press conference.
> The announcement __followed__ President Trump’s announcement from the White House in which he repeatedly told pregnant women, “Don’t take Tylenol.”
https://thehill.com/policy/healthcare/5518478-tylenol-acetam...
The claims are that Trump gave people the impression that Tylenol causes autism, which is a claim we've failed to substantiate 100% of the dozens of times we've tried, and that FDA put out guidance that is much, much softer in direct controversion of Trump’s claims.
In other words: Trump’s statements weren’t in response to the FDA decision nor was the FDA decision in response to Trump’s statements. Both were distinct responses to the head of HHS (a scientific illiterate and world famous grifting conspiracy theorist) deciding that vague gesticulating about Tylenol could help him meet his self-imposed September deadline to solve autism.
Why didn't they say it earlier? Didn't they say they were going to release the cause of autism earlier?
I think that it might be a real thing is because nobody really knows how acetaminophen even works. All the theories involve influencing the brain‘s chemistry. Who knows, maybe influencing a fetus’s brain chemistry can be bad.
https://hsph.harvard.edu/news/using-acetaminophen-during-pre...
https://www.thecrimson.com/article/2025/9/24/autism-dean-pub...
And yes, these links exist all over the place. The problem is that we have failed to establish causality 100% of the times we've tried.
Belief is one of the methods by which we demonstrate loyalty - and to the person affected, it's indistinguishable from any other belief.
Look, I get it and somewhat agree. However, the reason for the diagnosis (and any diagnosis) is treatment.
Maybe there are two different conditions that require speech, occupational, and behavior therapy to different degrees, however, in terms of convincing insurance companies in the US to cover those having a single diagnosis makes everything easier.
It's not as if a separate diagnosis would change how a speech therapist interacts with a child.
I applaud efforts to figure out what is going on and to categorize. But I also think that practically the ragbag diagnosis makes treatment a lot easier to access for patients.
We can't let Lawyering/word smithing/insurance manipulation restrain our access to the truth.
Therapists need to understand that many disorders can produce "autism-like" downstream effects, just like many things could cause anxiety or depression. Not understanding the disorders doesn't "help patients".
https://www.princeton.edu/news/2025/07/09/major-autism-study...
This is the really big part that a lot of people seem to miss when complaining about the changes in DSMV.
Previously there were dozens of conditions that had nearly the exact same symptoms and super similar treatments that may work.
The change basically said, for these given symptoms here's a bunch of treatments that may work.
I've known a few people that were diagnosed as something that would now be under autism, but because they had that diagnosis that didn't happen to include some of the treatments that actually ended up working for them they ended up not finding them until they happened to get a doctor that said "you know these diagnoses are really close, lets try this instead".
From talking with doctors I don't think I've heard anyone disagree that autism is almost assuredly a cover term for many different things similar to cancer not being a singular disease. The difference right now is that we don't have any concrete test to differentiate between any of the autisms yet, just various sets of treatments that work to varying degrees for different people.
Today most of the money and advocacy is for high-performing or moderately-performing people with autism. Not just in relative terms, the amount of funding for people like my cousin has gone down. It makes sense; they are the larger group by volume and are able to advocate better than people like my cousin.
I wish it weren't a zero-sum game, and we recognized that autism is just a word for a broad series of conditions. It would be like if we called everyone with poor eyesight 'blind': yes, your vision is impaired. But the solutions you need are very different than the solutions Stevie Wonder needs.
See also: https://www.nytimes.com/2025/10/01/health/autism-spectrum-ne...
Is this true? I think it's important to distinguish between social media (and other sorts of) discourse and where money is actually flowing.
Did the diagnostic criteria in DSM 5 change as a result of social media, was it the other way around, or was it hidden variables affecting both? Regardless, the money and attention tend to follow what the common people are saying. See: https://pubmed.ncbi.nlm.nih.gov
You're right that there are external variables, including non-medical variables, influencing the DSM-5's diagnostic shuffle, I just don't see them as particularly well "hidden".
Asperger's was eliminated as a diagnosis because differentiating it from autism was hard to do. Two different evaluations could land a kid as either autistic or asperger's depending on the day and the evaluator.
And, importantly, Asperger's qualified for less therapies and treatment than autism did. That meant that even though your kid likely needed more treatment, they'd be denied it because they had a good day when being evaluated.
The crossover for treatment was largely the same with autism qualifying for more.
Even if it was the "Nazi link" they'd simply have changed the name to something more acceptable.
TFA is suggesting that there are probably multiple conditions which cluster around similar symptoms which makes it hard to identify the exact cause of autism.
This isn't to assert that the clinical reasoning offered didn't have merit, just that institutional consensus-forming behavior isn't immune to the macro backdrop of the sociopolitical winds of the day.
Committee member A thinks: "These diagnostic categories aren't reliable" (true, clinical concern)
Committee member B thinks: "Honoring Asperger is ethically uncomfortable" (true, historical concern)
Committee member C thinks: "Hierarchical categories are problematic" (true, equity concern)
Committee member D thinks: "Spectrum model reflects current research better" (true, scientific concern)
No single person needs a "primary political motivation." No conspiracy needed. No explicit coordination required. Yet the outcome eliminating Asperger's and collapsing categories - emerges from a system where:
- Progressive ideology shapes what problems become salient
- Shared epistemic frameworks determine what solutions seem natural
- Professional incentives reward what can be publicly justified
- Social proof operates through "everyone reasonable agrees"
"The clinical rationale was legitimate" doesn't contradict "political ideology shaped the outcome."
Again, it does not because the treatments as a result of diagnosis remain the same. The primary role of diagnosis is to inform treatment.
If patients are seeing worse outcomes because of arbitrary "nuance", that indicates that the nuance carved out wasn't what needed to be carved out.
> isn't immune to the macro backdrop of the sociopolitical winds of the day.
This is conspiracy thinking.
You don't have any evidence that it was "progressive ideology" that eliminated the diagnosis, you just surmise it based on some people not liking their diagnosis being named after a nazi.
Slamming in reactionary politics in where it doesn't fit and a reasonable explanation does fit is just silly.
Sure, nobody is immune from politics. But I'm going to need more than "feels, vibes, and makes sense to me" before I start second guessing why a well respected diagnostic committee (and others besides the DSM like the ICD) decided to merge the two diagnosis.
Diagnoses for mental disorders, by their nature, are almost always going to have a level of arbitrary lines that could be drawn. That's why we have 5 versions of the DSM and will likely have a 6th in the future.
If empirical reliability of outcomes were based on social standing of the committee, you'd have a great point, but alas, there's a trending new paper on Nature explaining the precise mechanisms of how and why DSM-5's category elimination between Asperger's and ASD is a measurably less accurate approach than the DSM-4's categorical differentiation of the two conditions. TFA is saying that we should've been moving towards more categories with more nuance and detail, even back when we were at just 2 categories, not towards fewer categories with even less nuance, as the DSM-5 chose to do.
Regardless of your opinion on influence of the politics involved, the hard fact of the matter is that DSM-5 made moves in the exact opposite direction for increasing understanding of autism-family disorders relative to DSM-4, and some of the newest, most comprehensive empirical science ever done on the subject is trending on Nature right now stating exactly that: we need more categories, more nuance, more differentiation, not to paint everyone under one broad brush of "it's all a spectrum of the exact same underlying pathology".
It seems abundantly clear to me, and to I think anyone else who's had any amount of meaningful exposure to or working with both groups: nonverbal autism looks much more like profound, pervasive developmental disabilities - think down's syndrome - than Asperger's does. The latter has a bunch of people that can generously be called eclectic, but writ large, are generally capable of supporting themselves and leading independent lives: emotionally, financially, socially, mentally, physically, maybe with some therapy, some counseling, some CBT, and maybe reasonable workplace or school accommodations, like being allowed to wear noise-cancelling headphones during solitary work. The former, categorically, tend to not be capable of that level of independence. It seems facetious and absurd to allege on any level that these two groups are substantially or meaningfully similar, especially if such similarity is being used to justify a treatment approach that is as identical as you purport it to be. These are, very obviously, so obviously even a child could grasp it, at least two dramatically different groups, with at least two dramatically different sets of needs and courses of treatment.
I say that as someone who grew up with more or less all of the hallmarks of (and was indeed diagnosed with) what we used to call Asperger's Syndrome, but also as someone who volunteered at events like the local Special Olympics chapter, and I'm firmly in agreement with in_cahoots's chief concern: 'Today most of the money and advocacy is for high-performing or moderately-performing people with autism.'
There are a lot of people who need a lot more support than people like me, and those with that greater need are getting less of it than they need, because people with well-managed conditions like mine are being lumped in alongside people like in_cahoot's cousin who genuinely need much more support. These two groups are a difference of kind, not a difference in degree.
TFA explicitly says the opposite
> “The term ‘autism’ likely describes multiple conditions,” said Dr Varun Warrier, from Cambridge’s department of psychiatry, senior author of the research. “For the first time, we have found that earlier and later diagnosed autism have different underlying biological and developmental profiles.”
> The scientists are *not* advocating for a move towards two diagnostic categories, saying that this could be unhelpful for the many who fall somewhere in the middle.
> “It is a gradient,” said Warrier. “There are also many other factors that contribute to age of diagnosis, so the moment you go from averages to anything that is applicable to an individual, it’s false equivalency.”
The Nature article and the guardian article are both just saying that these are likely multiple genetic disorders with similar symptoms and treatments. Classifying and understanding them is useful valid research to do, nobody doing this research is suggesting that actually DSM 4 had it right.
These will split into different diagnoses if it's found that significant differences in treatments can yield better results. Otherwise, they are just going to call it autism. Much like, for example, we call uncontrolled tumor growth cancer even though it's really 1000 different diseases that all manifest the same way.
Even with cancer- the diagnosis and treatment vary tremendously depending on what type of cancer you have, how far along it is, and more recently how your particular genome responds to that version of cancer and each version of treatment. We don't just say, "whoops you have cancer" and start chemotherapy on the targeted area. Your argument doesn't make any sense.
The study "speaks to the need to be a bit more fine-grained in our approaches to diagnosis" with subtypes rather than a single condition, as one of the authors put it, there. Additional context: https://www.scientificamerican.com/article/four-new-autism-s...
Nobody's making the argument that the DSM-4 had it right: the argument being made is that the DSM-5's direction of fewer categories and more generalization was the wrong direction, and going instead towards more categories and less generalization was and is the right direction for increasing understanding, treatment attempt outcomes, and greater efficiency in diagnosing and serving those with greater needs.
"Advocacy" I could see more clearly, and I question how much of this "advocacy" is actually doing for "high-performing or moderately-performing" people.
IMO, the only way to really "resolve" the anxiety over prioritizing one group over another in either discourse or in resources in the long term is finding a way to integrate non-productive people into the daily lives of productive people. This seems difficult to imagine in today's America, where community is largely based around interests and careers that will self-select these people away.
The main difference is that we don't immediately institutionalize kids with severe autism, which does save a lot of money.
For my kid with severe autism, about the only real impact of more people getting therapy is that sometimes it's harder to get an appointment (triage is more first come first serve and less needs based).
Realistically, that simply translates into a month to a half year waiting for an opening.
I have a former friend who listened to too many podcasts and self-diagnosed himself as autistic right around when his relationship was falling apart. The guy couldn't handle his girlfriend asking him to step up on some things so he decided his "out" socially was to call himself autistic to garner sympathy. The dude isn't autistic, he is simply terrible at accepting any responsibility for himself and doesn't care how that affects others. That was my first exposure to how out of control autism labeling was about to become and it's gotten a lot worse since then.
My step-son is diagnosed. He is on the spectrum. He was non-verbal for longer than most children and low-verbal for years after that. He has fine-motor challenges and operates on an emotional level behind those of his peers.
If he's being an ass, we let him know. He knows his condition is not an excuse for his behavior. He needs to know how to cope with and navigate the world around him. Autism awareness and advocacy is about not shaming people for wearing ear protection in public. It's about recognizing that texture aversion is a thing. It's about knowing to extend grace when appropriate. It's not about letting people be shitty.
He may be autistic, but he does not get to interrupt us. He does not get to derail conversations into his interests. He does not get to ignore his hygiene. Instead, we try to teach him to be patient. To be polite. Strategies to make necessary things a part of his routine.
The biggest difference is that we do these things with compassion and with the realization that some things are more difficult for him. Rather than what we did in the past, which was browbeat autistic people into masking.
You can disagree with someone's self diagnosis all you like, but there's absolutely NO WAY for you to make a diagnosis yourself unless you are actually qualified to do so.
Please try to understand the difference.
Only now are you even acknowledging that it could be in error as well.
And without an actual medical diagnosis, we shouldn't treat him as autistic.
There, you have your out for your poor responses.
Did you miss that?
Unless either party has an actual set of qualifications to diagnose, then neither should be pronouncing one way or the other.
It could be, it could also be that people are finding a "reason" for their behavioural issues/predicaments.
It's far too complex (even for qualified professionals) to be making broad statements.
The poster is claiming without any evidence other than the "friend" was "self-diagnosed", which doesn't tell us if the "friend" was right, or not, and adding that they knew the diagnosis was wrong because of other claimed attributes.
I'm honestly shocked at the response to me pointing that out.
If you want to go round making judgements on peoples' mental health without any qualification to do so, and post that judgement on social media (which Hacker News is) then I will call you out for that, every time I notice.
People come to these comments claiming to be all about science, all about serious thinking that's not found on other social media, but then this trash gets posted and people calling it out get attacked.
This might as well be on Reddit, or Facebook.
So with just this information it is hard to say if your friend is indeed autistic or not. It would need a more professional diagnosis to say either way.
Even then you’re not free of the consequences. Sometimes just have to push yourself and say learn to bite your tongue to not blurt out an insensitive thing. What a diagnosis does give is knowing that yes it’ll be harder, to have patience with yourself, and to learn coping mechanisms.
Ironically, sometimes the worst criticism autistic or adhd people get though are from family or friends with undiagnosed autism or adhd themselves. Because they have to work so hard to mask they become very critical of people with legitimate diagnosis.
There can also be palpable downsides to having a diagnosis at all, eg in my birth country everyone with an ADHD or Asperger's diagnosis is legally required to pay for medical evaluation out of pocket to be allowed to get a driver's license and will face medical reevaluation on renewal as well.
It's not always great in the US despite it being acknowledged and somewhat accepted. It's gotta be really rough in a country that doesn't accept adhd. Ouch, a medical evaluation might make sense, but to have to pay for it out of pocket, ouch.
Though on the flipside in some countries the doctors don't care what meds they prescribe. It's very strange how things vary by coubtry. Some are absurd.
I guess my comment assumes the US where it has perhaps become a bit "trendy" as the OP suggested. I will say that when possible most ADHD'ers or aspergers do benefit from professional guidance.
I'm sure a lot of those shadow sides disappear in adulthood when one is more in control over one's own destiny but so do a lot of the benefits (eg workplace accommodations aren't nearly at the same level as school accommodations and unfortunately I'm convinced the vast majority of ADHDers/Aspies are better off not telling people at work).
It's hard to say what to make of the whole "trendy" thing, for every such person I know I know several others who are definitely on the spectrum but undiagnosed. I do think in our culture we have an unhealthy tendency to jump from "this is difficult for me" to "something is wrong with me" but on the other hand executive function or sensory difficulties are something many people experience from time to time and if "I'm a little bit autistic/ADHD" is people's best way of describing what they're going through then I don't want to silence them, because I know those difficulties are real and I have a lot of sympathy for that.
In an ideal world we'd be able to talk about the symptoms without having to reach for the syndromes, but that requires a level of experiential insight and standardized nomenclature and especially sympathy on a population level that's just not really there yet.
If you just tell people you struggle with procrastination or have analysis paralysis or get too sensorily overwhelmed by sounds or smells or the office environment to function people do still often treat each other like they're snowflake wusses that need to grit their teeth and pull their bootstraps or whatever.
The fact that this is all just part of "the human condition" often just hardens people more ("I had to grit my teeth and bear it's only fair you do the same"). Putting people in an exceptional "disease" bucket gives some respite from that, would that it be otherwise.
Better to acknowledge that there's nothing special about being diseased, there's nothing wrong with being diseased. We are all diseased and we all deserve and benefit from care. Those that don't think so should try talking to an older person ;-).
It's been interesting to see the therapy (and meds for the other problems) working. Now that we know, my wife has had some therapy to help support her and help her support me - and it's been wonderful. Understanding wtf is going on made it easier to talk about, address, and improve. It's an on-going thing but talking to qualified people was the first step.
I received an Aspergers diagnosis back when it was still separate. To me it still doesn't feel right for my condition to also be lumped in with people like your cousin. I understand that it can still be a "spectrum" but the spectrum is far too wide now.
Your cousin has very different struggles and needs compared to someone with a more high functioning autism, or even someone with (formerly known as Aspergers) like myself.
An glaringly incorrect division is more harmful than a lack of division. If it had been a "good enough" division it could've been kept.
The best-attested actual axis is "has epileptic seizures?"; partitioning by it gets rid of most of the bimodalities in the data.
My estimate is that there are around 5 individual axes but many of them are continuous and it's not perfectly clear if some are actually correlated to others. And since the others are usually not bimodal it becomes difficult to choose different diagnoses based solely on symptoms, in the absence of knowing and testing actual mechanisms.
I'm unsure about "difficulty expressing yourself clearly even when you know exactly what you mean". Nonverbality is a possibility but I'm actually skeptical of it, though it does give a very useful hook for experiments - there are some toddlers who are initially verbal like normal, then gradually become nonverbal and can recognize "something is happening to me!". I specifically exclude intelligence-vs-retardation; though both are common, neither seems intrinsic to autism itself (though perhaps they are potential causes?). Despite their correlations, I also exclude general introversion, ADHD, special interests as being either external or secondary. And "making repetitious movements" or even "throwing tantrums" is clearly on the side of "coping strategy" rather than a part of the disease.
Many autism quizzes split the questions into categories which somewhat align with the axes, but as I said before it's not clear what's actually independent and forms a meaningful difference.
Two axes outside of autism are also clear: schizophrenia is the formation of the patterns too detached from the world (as opposed to autism which where internal patterns result from the real world being too strong in some way - it's quite striking that for all the comorbidities autism has, diagnosis of schizophrenia in the same individual is exceedingly rare and probably wrong in at least one of the cases, though they intermingle at the family level); dementia is when the brain fails to build enough patterns (where autism builds too many).
One opinion I hold vehemently: if you're still in the "the problem is other people" phase, you aren't claim autism, you're just an asshole. Doing anything useful about autism requires recognizing: "my brain (my body?) is the reason I am suffering"; the best others can give is palliative care.
While I'm sure there's plenty of people who adhere to that theory, I'm worried you're getting that confused with the theory that a bunch of handicaps (among which is autism) are mostly just handicaps because the world isn't accommodating them.
You can imagine if everyone in the world was in a wheelchair it'd be real easy to get around in a wheelchair. Similarly if everyone in the world had autism it'd be much easier getting around having autism.
Whether you like it or not, to people with autism "other people" are a large part of the problem. Having sensory issues around shaking hands isn't inherently a huge problem, but fuck me if people don't make it a huge problem. Your options are basically to either have people think you're a gigantic asshole or to be deeply deeply uncomfortable whenever it comes up.
All to say that the map is not the territory, and leaping to conclusions at the first label that sounds like it fits the bill can have devastating consequences.
And as in my case, labels can be used to shift the blame away from the caretaker responsible for trauma/etc. by medicalizing the consequences, or onto an existence that is perceived to be unchangeable/futile to address.
That you actually had a different condition that superficially presented as ADHD/Autism.
I’ve recently learned my 5 year old is exhibiting behavior problems in kindergarten. His teacher has put the notion in his mother’s head that he may have autism and has provided his mother a fast track referral to have him tested/diagnosed. I feel strongly that he does not have autism; aside from being disruptive in class he doesn’t have any other characteristics—-he is very verbal, social, doesn’t avoid eye contact or physical contact. I’ve spoken to his Sunday school teachers, daycare workers, etc and they were incredulous that he potentially has autism.
‘Well if he doesn’t have it what’s the harm in having him tested at a facility that specializes in pediatric autism? If you’re right they’ll easily determine he’s not autistic, right?’ Is the question I can imagine being asked at my reluctance to consent to the testing and diagnostics. Frankly, I’m suspicious of the (potential) conflict of incentives that a clinic specializing in pediatric autism may have; I positive diagnosis is only good for business in the way that a men’s clinic is incentivized to find every patient that walks through their door has low testosterone. Especially considering the subjectivity and ‘spectrum’ that falls under the blanket term ‘autism’.
On a scale from likely to incredibly unlikely, how rooted in reality would you characterize my concerns? Also what harm, if any would come from a false positive diagnosis? Would it outweigh the harm of a person being an undiagnosed, high functioning person with autism?
When I was a kid, my parents' nicknames for me were Spock and Ms. Literal. I was gifted, at the top of my class, and my parents advocated for me every single year so that I received a high-quality education. The school was receptive, and I thrived academically. I struggled socially, but being a girl it demonstrated in a lack of friends rather than behavioral disruption. So in every way I was the ideal student. Today I would easily be diagnosed as autistic, but in the 90s that wasn't in the conversation. Especially given our experience with my cousin. I don't think of myself as autistic, I'm just a person with strengths and weaknesses.
Today for better or worse we live in a society that thrives on labels and categorization. Your kid gets a label and all of a sudden the school is able to give him an IEP and the support he deserves and should have been getting all along. In the cynical perspective, your kid gets a label and that affects the way he sees himself and relates to the world. The label becomes a justification instead of just a descriptor.
From the educational perspective, I want the school to do everything possible to help my child succeed. If that means jumping through hoops to get him support then so be it. But from the identity perspective I want my kid to be unburdened. To learn from the world around him without getting pigeonholed. And if a diagnosis was going to lead down this path I would be very intentional about when and to whom I disclosed this information.
This isn't getting into the world of false positives. In my experience (2 boys similar in age to your own) teachers tend to be good referrers just because of the volume of kids they deal with. So if your teacher recommends this there's a good chance they will fall under some diagnostic criteria at some testing facility. The question is what to do with the information.
It's like saying I can't run. My arm hurts. Then you say. What do you mean? You're a quadriplegic!! He's like oh yea that too but I can feel a tingle in my arm. Treating the arm isn't fixing the problem lol. If that person was an advocate for treating tingles in their arm. You would think it's kind of silly because if they were to treat that. It doesn't really help the quadriplegic part. But he keeps saying it will. It's not that I don't believe he has a problem with his arm. I'm sure he does. But the problem on why he can't run isn't that.
It also shouldn't be a binary classifier. Some people are definitely "autistic", and some are definitely not, but many of the personality traits that define autism are continuous: e.g. some people are barely distracted by loud noises (normal), others are distracted by loud but not quiet noises (normal), others are distracted by specific quiet noises like chewing (autism?), others are very distracted by any noise even with noise-cancelling headphones (autism?).
I think people should just say "I have sensory issues" (or clarify "noise really distracts me"), "I'm bad at reading emotions", "my mood is really affected by others". And accommodations maybe do need to be binary (or graded), but should ideally be informal, and definitely be for specific traits instead of "autism": e.g. don't give someone who thinks methodically but isn't bothered by loud environments their own room (unless you give everyone that), but don't assign them vague tasks or they'll perform poorly.
"I'm autistic" could mean "I'm non-verbal and can't function without constant care", "I'm very good at hacking, but need help with basic things", "I can function independently, but tend to over-think and over-explain and can't read people's emotions", "I can read people's emotions but am overwhelmed by them, I'm also unusually soothed by ASMR", "I'm unusually irritated by ASMR"...and there's no boundary that separates "real" autism from almost normal with certain traits slightly elevated.
I would agree with you that there are issues caused by the wide range of presentations. It seems as though there's a tension between differentiation and unification at the various levels of scientific research, social understanding, social accommodation, etc. I expect things will get teased out over time.
DSM summary: https://www.cdc.gov/autism/hcp/diagnosis/index.html
DSM and ICD summary: https://www.autism.org.uk/advice-and-guidance/topics/diagnos...
ICD-11 direct: https://icd.who.int/browse/2024-01/mms/en#437815624
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Essential (Required) Features:
Persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the expected range of typical functioning given the individual’s age and level of intellectual development.
Specific manifestations of these deficits vary according to chronological age, verbal and intellectual ability, and disorder severity.
Manifestations may include limitations in the following:
Understanding of, interest in, or inappropriate responses to the verbal or non-verbal social communications of others.
Integration of spoken language with typical complimentary non-verbal cues, such as eye contact, gestures, facial expressions and body language.
These non-verbal behaviours may also be reduced in frequency or intensity.
Understanding and use of language in social contexts and ability to initiate and sustain reciprocal social conversations.
Social awareness, leading to behaviour that is not appropriately modulated according to the social context.
Ability to imagine and respond to the feelings, emotional states, and attitudes of others.
Mutual sharing of interests.
Ability to make and sustain typical peer relationships.
Persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the individual’s age and sociocultural context.
These may include:
Lack of adaptability to new experiences and circumstances, with associated distress, that can be evoked by trivial changes to a familiar environment or in response to unanticipated events.
Inflexible adherence to particular routines; for example, these may be geographic such as following familiar routes, or may require precise timing such as mealtimes or transport.
Excessive adherence to rules (e.g., when playing games).
Excessive and persistent ritualized patterns of behaviour (e.g., preoccupation with lining up or sorting objects in a particular way) that serve no apparent external purpose.
Repetitive and stereotyped motor movements, such as whole body movements (e.g., rocking), atypical gait (e.g., walking on tiptoes), unusual hand or finger movements and posturing.
These behaviours are particularly common during early childhood.
Persistent preoccupation with one or more special interests, parts of objects, or specific types of stimuli (including media) or an unusually strong attachment to particular objects (excluding typical comforters).
Lifelong excessive and persistent hypersensitivity or hyposensitivity to sensory stimuli or unusual interest in a sensory stimulus, which may include actual or anticipated sounds, light, textures (especially clothing and food), odors and tastes, heat, cold, or pain.
The onset of the disorder occurs during the developmental period, typically in early childhood, but characteristic symptoms may not become fully manifest until later, when social demands exceed limited capacities.
The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning.
Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others.
A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.
> To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).
Example (A.1):
> Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions
The medical diagnostic criteria, despite using technical language, are still vague: "deficits in..." has a wide interpretation. Furthermore, "at least two of the four" permits two people diagnosed with autism to have different symptoms: one child may only have limited interests and insistence on sameness, while another may only have "stereotyped" motor movements and hypersensitivity (and the specific interests, "stereotyped" behaviors, and hypersensitive stimuli can vary).
> some people are barely distracted by loud noises ...
It's not an argument for a non-binary classification. The whole point is that that a symptom, even a group of symptoms, doesn't define autism. Sensitivity to noise is just one of those things that some group has managed to be associated with autism.
Its definition has been expanded significantly. If it continues, there'll be two types of people: autists and psychopaths.
I think a lot of people miss that the changes that combined a ton of stuff into autism was because we had a ton of different disorders that had super similar treatment plans, but it could cause issues when your doctor didn't know all of the related disorders to be able to know to try different treatment plans.
The combining was an acknowledgement that we don't know what causes these combinations of symptoms to occur but they seem to be related when certain combinations of them occur and these treatments can work to lessen the impact on the person experiencing it.
For what it is worth, I have ADHD -- 'cousin' disorder to Autism. Like Autism, ADHD has an array of presentations. I hold the belief that diagnostic labels are simply abstractions for grouping clusters of vague and often arbitrary symptoms. In that sense, many labels are tautological. For example, ADHD/Autism is defined by a set of behaviors, yet people are said to have ADHD/Autism because they exhibit that exact same set of behaviors.
From my perspective, conditions like ADHD and Autism are unusual conditions in terms of their pathology. I suspect some autistic people might agree when I say this: ADHD (and certain forms of Autism) seem to be treated less for the benefit of the individual and more for the benefit of those around them. Compare this to depression -- a condition where the primary suffering is internal -- experienced by the person themselves. With ADHD and Autism, the person is not necessarily suffering directly, but their behaviors often cause difficulty for others, and in turn those others impose suffering on the individual. Treatment, then, improves behavior (somewhat), which first benefits those around the person, and only indirectly improves the individual's own quality of life.
I may be struggling to articulate it perfectly, but I can’t shake the sense that there’s something unsettling about the pathology of these conditions. It has become almost imperative that I take amphetamines every single day. A practice that is far from pleasant, to say the least. Technically, no one forces me to medicate myself, yet the pressures of society make it feel obligatory. I alter myself not primarily for my own sake, but because society has deemed my natural state defective, disruptive, or unworthy. Treatment to me seems less about addressing my own suffering and more about making me tolerable to others.
I am well aware.
> Can't sleep and eat properly
Would be less of a problem if I was not forced to conform to society's expectations. I also have been diagnosed with Delayed Sleep-Phase Disorder, so I am also well aware. Also what are two of the most common side-effects of stimulants? Sleep disturbances and reduced appetite.
Also, what type of eating issues are directly due to ADHD and not a comorbid disorder? I skip meals a lot due to laziness, but I wouldn't say it causes any dysfunction in my life.
> can't focus on your work
Who is more negatively affected by this behavior: your employer or you?
> and hobbies
So what if I struggle to commit to one hobby or finish a hobby? I do my hobbies for my enjoyment, not some ulterior motive. I do not think there is anything pathological about being a jack-of-all trades type or not committing to some hobby.
> can't maintain your relationships
Which I believe is direct evidence of how our symptoms affect others and not inherently oneself.
> everyone I know is incredibly grateful to be on medication
I remember feeling the same way once. I have been taking medication for over a decade now. Grateful is not the word I would personally use. I would say that I made a deal with the Devil just to feel some sense of respite.
> Who is more negatively affected by this behavior: your employer or you?
I like my job. I think I am making the world a better place, and I would choose to do this even if I was wealthy enough to never work. When I am unable to do my job because my ego does not align with my id, it makes me angry and disappointed.
> I do not think there is anything pathological about being a jack-of-all trades type or not committing to some hobby.
Nor do I. I do, however, think there is something pathological about sitting on the floor for three hours doing nothing because you're procrastinating on deciding what book to read next, or debugging a 3D printer, or replying to an invitation (or because you need to shower, or cook, ...). This behavior is not enjoyable at all.
It sounds like you primarily experience ADHD as getting in the way of things you have to do, rather than things you want to do. I'm sure that sucks in its own way, but the grass looks greener from over here.
> Which I believe is direct evidence of how our symptoms affect others and not inherently oneself.
I inherently care about other people, and when I let them down, it makes me sad. Perhaps you prefer to define all instances of your friends having desires and expectations around your relationship as oppression, that when I am upset I missed an important event it is because I am being brainwashed by society. But I think this is a small, selfish way of viewing the world. Many traits can get in the way of being a good friend (surely you know someone who is prone to anger, or envy, or insecurity), and if you are a good friend, you try to mitigate them.
> I would say that I made a deal with the Devil just to feel some sense of respite.
Next time you see the Devil, do me a favor and ask him if he has any other opportunities.
I think it would be helpful to specifically characterize what forms you are talking about. Paint a picture of such a case. Because the forms my mind jump to are definitely suffering themselves and I dont want to strawman you.
Sensory overload, unmanageability, etc. Someone who may be perfectly content to obsess over some niche interest but cant take care of themselves because they are inconsistent at work. Cant pay bills, neglected health issues, etc. I can begin to imagine how someone might characterize this as you have but I think that would be quite flawed and I'm not sure this is what you're talking about.
To be clear, I’m not denying that some people experience direct suffering like sensory overload, daily dysfunction, etc.. Though I would argue much of this is somewhat expected when one lives in a society that wasn't designed around edge cases (nor am I saying such a society is truly possible at our scale).
My point is about a different subset of cases, like mine and say individuals with high-functioning Autism, where the suffering is mainly socially imposed. The pressure to medicate or "fix" ourselves comes less from unbearable symptoms and more from others' expectations that we be more tolerable or productive. That was the unsettling part I was trying to get at. I was trying to make a point about a little compassion from others would go a long way. I was not trying to absolve myself and others like me of our responsibilities/symptoms. Often times, the symptoms of these disorders are not treated as symptoms of a disorder, but rather, direct flaws of one's character. All in all, I find the difficulties hard to describe unless one has lived the same or a similar experience.
Whether or not one has a disorder does not make them less of a human being. Thus, I do not think it is a coincidence that depression, anxiety, substance abuse, and suicide are highly correlated with disorders like ADHD and high functioning Autism, and I do not think a lot of those comorbid issues stem purely from some kind of internal (hypothetical) brain difference.
Does that make any more sense?
There are so many people out there sacrificing their own mental and physical health for their children or their loved ones or their students or patients to simply have a few hours of calm happiness every day.
And you flippantly dismiss them. You paint them with a broad negative brush.
This is an ice cold, selfish, naive and incorrect statement.
That's what disorder means
Every single medical professional is aware of that.
None of the neurodivergent conditions have a single "cause" yet. None of them are "diseases" yet because we don't know what causes them.
Yes, lots of people have small amounts of the "symptoms" that get labeled as a condition. That is not meaningful.
Everyone gets diarrhea sometimes. But if you get diarrhea regularly, or really bad diarrhea, or diarrhea that includes severe pain, then it might be IBD. IBD doesn't have one cause. It's very unlikely that it's even a single problem.
If you eat too much greasy food and have bad shits, you do not have IBD even though you have that "symptom". If you claim to have IBD, you are just wrong.
Yes, some people on tiktok who think they have ADHD or Autism are just wrong. If Americans could afford to go to the doctor for non-life threatening problems, they could get a psychologist to tell them that. Americans self diagnose because they can't go to the doctor.
This is all true of "Cancer" as well, but there isn't a giant PR campaign to convince Americans that we are diagnosing too many people as having cancer. Nobody gives a shit that both they guy who dies in a month from metastasizing brain tumors and the guy who had to remove a benign skin mole both had "Cancer". Every kind of cancer has a name, but people will still say "I have Cancer" just fine.
It's only with Autism and ADHD that people insist we have somehow done something wrong by using the exact same language structures as other medical problems.
Meanwhile, with attacks against Social Security, this admin who claims to care so much about helping Autistic people is ensuring that people who cannot function in society will die miserably and uncared for.
Maybe Tylenol while pregnant is a risk factor for people who are already genetically predisposed to it or something. The data sucks so far, but maybe further study will show something. My sister worked on a study in the 2000s that was looking at this, as well as looking at getting the flu while pregnant. Nothing came of it.
If ASD is comprised of a variety of qualities that may not all be expressed at once, and they are expressed in varying degrees, what does that mean?
For example, it seems unlikely its just the existence of single gene that determines if you have it or not.
Or maybe its cause is continuous as well. More microplastics more autism (massively simplifying here, but just illustrating).
I dont really know... seems like maybe there are more interesting instincts people might have here. The fact that it's kind of an amorphous mess seems to suggest something about the nature of the thing we are talking about here.
https://www.bbc.com/news/world-europe-43820794
Autism is exactly one thing, according to its discoverer, Hans Asperger: a diagnosis to remove the mentally undesirable from society to safeguard the genetic purity of the noble aryan race (translated from the paper by Hans Asperger)
Note: by removing he meant killing anyone with the "diagnosis", child or adult. Hans Asperger signed the orders to kill at least 5 children, probably many more.
In other words: the "discovery of autism" was nothing other than an excuse to massacre children deemed to be a burden on families for whatever reason. If you were diagnosed with autism and weren't hyperintelligent, you were sent away to be killed. It was the absolute opposite of neurodiversity, of tolerance, of neurodivergent people and it was never meant as a real diagnosis of a real condition. It was an excuse for murder.
Of course, psychology sees no problem with this little part of history and still revere Hans Asperger as a hero, as opposed to someone who should have been hanged at Nuremberg along with his colleagues. Psychology has a history of doing this. If you check what happened to Freud's patients, especially the women, you'll see that he was a seriously disturbed person as well. He made (in today's dollars) billions testifying in court that women who accused rich Austrians, often their own family, of rape they wanted to be raped and should be locked up for this deviant behavior ("not" to protect and satisfy the desire for revenge in their rapists). Oh and in a few cases, that male victims of murder by their own family were guilty of their own murder.
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