The overloading of the term autism has had a real damaging effect on some people. My cousin is profoundly autistic: he's nonverbal, and will never live independently. In the 90s most autism research was focused on helping people like him. He was involved in some pioneering studies at John's Hopkins University.
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.
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.
Unfortunately, many autistic people also get misunderstood to be irresponsible and lazy. They are also unable to understand other person's feelings and are thought to lack empathy, even though it is just that they are unable to recognize social cues.
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.
This is good advice - I always struggled but managed, then one day I just broke. Decided to do the thing everyone says and get some help. The therapist after a session was suggesting autism and some other stuff mixed in, because of the internet arm chair mental health crowd I was skeptical. I also know some people that are obviously autistic, and a good friend who's autistic and schizophrenic which made me feel like I have nothing to complain about, I'm obviously "fine." But, since the shrink kept mentioning it, I opted for the neuro-psych exam to get a more concrete diagnosis and indeed high functioning autism is there.
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.
Yes, it’s similar with ADHD as well. You really should seek a professional diagnosis before going around claiming it.
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.
In many places getting an adult ADHD diagnosis is near impossible. I was diagnosed at age 8 personally, but I now live in a country where adult ADHD is borderline not acknowledged as even existing, and I know people have to fight very hard to get diagnosed and even harder to get access to medication if they can get it at all.
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.
Guidance definitely can be helpful. Of course it's important that the possibility exists; Ihhave high functioning AuDHD and without extra support I probably wouldn't have made it as far as I have, but there's shadow sides to "support" as well. From a very young age I had to constantly play manipulative games one way towards social workers to present myself as adequately dysfunctional to qualify for financial support that my (poor, single parent) family desperately needed, and on the other hand as more "normal" than I really was to counteract my elementary school that was convinced I should go to special education and went out of their way to contact my prospective middle/high school and try to talk them out of accepting me for instance (I ended up doing the honors track in secondary education and getting a BSc after).
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 ;-).
I think that part of the problem is fear of discrimination if your permanent medical record contains a diagnosis of autism. Its very conceivable that, now or in the future, a diagnosis could inhibit ones ability to immigrate, hold certain jobs, or get affordable health insurance.
Anyone who has experience with an autistic person can figure out pretty quickly that they have empathy if they try. When you tell an autistic person that you are feeling some way or another explicitly they will usually respond with empathy. But if you are just dropping subtle hints or using body language they will assume everything is okay.
I don't see the point in asking that question as his friend self-diagnosed himself as "autistic". Jsbi, I assume, is expressing doubt in the self-diagnosis rather than diagnosising his former friend.
I get it. Mental health issues have not been taken seriously in the past to say the least. And we're better off when people can openly talk about them without being ostracized. But you can definitely swing too far in the other direction. I keep meeting people who are almost bragging with their claimed collection of mental illnesses as if it's a lifestyle choice.
This still aligns to what I said no? He himself is expressing doubt with his own reasoning why. Either way it doesn't matter as the assumption shouldn't be his former friend is autistic by default.
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.
No, he pointed out how over-saturation of autism awareness has resulted in people self-diagnosing as a way to absolve themselves of shitty behavior.
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.
No, he made a diagnosis - neither party appear to be in a position to do so.
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.
Not to justify it but 1) your responses have been misunderstanding their point, even after a good explanation of it and 2) they had some of their comments down voted (IMO, probably because of how they expressed their perspective rather than because of what it is).
So it is (or rather, seems like to me) a double whammy psychology of having their point be demonstrably misunderstood while it is also (seemingly) being rejected by down votes. (Again, just explaining, not justifying.)
(Also, I cannot help but notice the irony(?) of this misunderstanding and the necessity of this explanation in a thread on a post about autism. No shade to anyone, just making the observation.)
First of all, I firmly believe you're a sock puppet.
Where is the "good explanation"?
The first thing he did was demand qualifications of the poster. Exclaiming he's diagnosing something. He started aggressive.
I then pointed out that his friend also made his self-diagnosis with the same qualifications.
He then got all huffy and basically said "So you agree his story is rubbish", which is also rather aggressive. And all through this, he's been dismissive and condescending to people. And everyone else has been rather polite to him even with his attitude.
And I don't think anyone is misunderstanding him. Everyone acknowledges his point that the poster is likely not a qualified professional. However, they are pointing out that neither is his friend. And I also pointed out, diagnosis or not, there's no excuse for being an asshole. Being autistic does not give you carte blanche to treat people like shit.
So it's more like his refusal to understand everyone else's point. And likely why he's getting downvoted. But that shouldn't matter. So, you know, stay awesome, dude.
It was in the comment four up from my first one in this thread.
> No, he made a diagnosis - neither party appear to be in a position to do so.
(They also gave other explanations elsewhere in the thread but that is what I was referring to because it is enough for a reader to understand the point and you actually replied to it.)
Their point is that the other commenter should not have written "The dude isn't autistic" because that is a negative diagnosis rather than an agnostic statement.
> So it's more like his refusal to understand everyone else's point.
Others were failing to make substantive points against the commenter in question because their point was going misunderstood. It took a few back-and-forths to get to the actual point (in fairness, that's because of the vagueness in their initial comment) but that point is consistent with what they've written in this thread.
> I firmly believe you're a sock puppet.
Genuinely, I read this as feedback that I empathized well given that I'm not. But especially because I disagree with their point. (The presumption that the first commenter meant "The dude's not diagnosed" is very reasonable and obviates the other commenter's point, except as a general reminder to be more careful with phrasing, which their question wasn't.)
> Genuinely, I read this as feedback that I empathized well given that I'm not. But especially because I disagree with their point. (The presumption that the first commenter meant "The dude's not diagnosed" is very reasonable and obviates the other commenter's point, except as a general reminder to be more careful with phrasing, which their question wasn't.)
FTR I read your initial comment as being critical (but fair) of my posts. How the person you are talking to missed that and jumped to you being me is quite the jump.
Honestly, re-reading everything, I think that paragraph is too harsh. In particular, that presumption of their intended meaning is not reasonable. They clearly meant "the dude's not autistic", which you correctly called out as a diagnosis. I appreciate your thoughtfulness.
Saying “the guy isn’t autistic” isn’t a diagnosis. Mostly because he isn’t a doctor. So harping on people making diagnoses ignores the larger issue of the person using a self-diagnosis of autism to excuse his own shitty behavior.
> Saying “the guy isn’t autistic” isn’t a diagnosis.
Actually, this is how a diagnosis could be phrased by a particularly informal doctor. You mean to say it's not a valid diagnosis because he's not a doctor, which is rather the point.
> ignores the larger issue
Indeed, they wrote a comment in reply to what I can only assume is a pet peeve (I do hear and read a lot of careless negative assertions like that where they are not warranted; it's a worthy pet peeve) to bring up a smaller issue in the context of the bigger picture, while otherwise not addressing the other point. I think it's a reasonable assumption that they meant to do that.
I guess to this point, didn't you notice me also doing that? I'm just commenting on the things I want to comment on. I haven't mentioned what I think of the friend in the story because I haven't seen a reason to. Everyone knows being entirely self-centered is shitty.
But since I'm here, I guess I should comment on it. I wonder about that person and what their problems are. Why would they do something so anti-social? It's likely there's something else going on. Perhaps more to the point, it's unlikely there's nothing going on. Maybe it's actually autism. The idea that it's nothing and they're "simply terrible at accepting responsibility" is naive and, frankly, disrespectful. It's sad to me that nobody's wondering about OP's friend and everybody just takes OP's story at face value. I mean, if OP isn't qualified to diagnose but readers just roll with their diagnosis anyway, it's rather obviously unfair to the friend who has a similarly-qualified claim but is assumed by their former friend to be a scumbag.
Well, you came here to defend another poster. Your initial address wasn't to the story itself, the poster in question, etc.
And I even mentioned that even if he were autistic, it's never an excuse. A diagnosis is a tool for self-reflection, not a get-out-of-trouble-free card. So he's still shitty for using a diagnosis as a reason to be shitty.
People are taking OP's story at face value because it doesn't warrant investigation. It's minor enough that even if he were lying, it doesn't matter. The story is banal enough that it's likely happened to someone at some point. It doesn't require the display of credentials or anything like that. And no one is asking us to do anything about either side. Dude was just sharing an anecdote. That's why people are taking it at face value. Because to do otherwise is to dedicate too much energy to something that doesn't matter.
> People are taking OP's story at face value because it doesn't warrant investigation. It's minor enough that even if he were lying, it doesn't matter. The story is banal enough that it's likely happened to someone at some point. It doesn't require the display of credentials or anything like that. And no one is asking us to do anything about either side. Dude was just sharing an anecdote. That's why people are taking it at face value. Because to do otherwise is to dedicate too much energy to something that doesn't matter.
Whatever it's worth to someone else to tell a lie, it's worth to me to correct it.
> So he's still shitty for using a diagnosis as a reason to be shitty.
You're getting one side of the story and saying that doesn't warrant investigation. Empathy is literally the opposite of that. You do not have any reason to believe the friend was being shitty. OP didn't provide that.
> First of all, I firmly believe you're a sock puppet.
Please don't post insinuations about astroturfing, shilling, brigading, foreign agents, and the like. It degrades discussion and is usually mistaken. If you're worried about abuse, email hn@ycombinator.com and we'll look at the data.[1]
Long before this was mainstream a misdiagnosis of ADHD and then autism led me on a decadeslong course of therapy and treatment that ultimately didn't address my issues. It was even worse since I was a child at the time labeled by people I was supposed to trust and could not comprehend the true meaning of these terms, so I grew up into an adult assuming what they told me was the truth, the whole time. Because of their actual role in my issues, I now know that nothing they could have labeled me with would have helped me and allowed them to take responsibility for my poor treatment.
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.
Same with my little brother. I've seen autism turn into an ignored subject to being hijacked by higher-functioning autistic people who are controlling the narrative. It's good to have more autism awareness, but they're the top 1% of people with discernable autism and can hurt large numbers of lower functioning people with autism who basically have to be taken care of by their families for the rest of their lives.
Social media is not disconnected from society as a whole. Influencers are called that because they have actual influence. You only need to look at and truly understand the MAHA movement to know this. It's not a movement by RFK; it's a movement of people (often moms) who are dissatisfied with their current situation and trying to do something to change it. They may be flat out wrong, but they have influence nonetheless.
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
I don't disagree with this at all; but I do question if there's been a lot of research for what kind of resources even help "high-performing or moderately-performing people", let alone directing these resources to this demographic over autistic people who struggle to meet society's expectations for individual productivity.
"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.
Topically relevant: the DSM 5 eliminated the distinction between what was formerly called an Asperger's Syndrome diagnosis from an Autism diagnosis, in part because the name "Asperger" came from a Nazi scientist, and therefore, per then-current political winds, the only morally correct action to take was to erase the name. Of course, this motive needed some kind of non-political justification to not come across as what it was (an example of non-medical political partisanship aimed at erasing history that was disfavored by the political partisans pushing the agenda), which is where the idea of re-categorizing what were and still are clearly at least two distinct clusters of diagnostic patterns as one grand, unified "autism spectrum" that functionally resulted in little more than muddying of waters in the field, which now need to be cleared up again - as pointed out by TFA.
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".
How much does the DSM actually matter outside of clinical contexts? Labels have a life of their own, and people were linking aspergers and autism many years before the DSM did.
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.
The diagnostic reliability criteria even back then painted a picture of the details of the condition space being more nuanced than what were currently being captured, not less nuanced, so the idea of reducing nuance and distinction still seems questionable by an empirical and epistemological standpoint. However, that decision remains defensible and supported by the social justice / equity / de-hierarchicalization / eponym erasure motivational drives. These, besides the eponym erasure specifically, also explain many of the other changes in the DSM-5, like the elimination of many other more-detailed diagnoses, like PDD-NOS.
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."
> so the idea of reducing nuance and distinction still seems questionable by an empirical and epistemological standpoint.
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.
>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.
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 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.
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.
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.
Do blind people and nearsighted people have the same treatment? Saying people with profound autism need the same treatment as people with autism commenting on Hacker News is patently absurd. Go ahead and try offering therapy and workplace accommodations to nonverbal people living in a residential home. You're proving my point for me, we've lost sight of these people.
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.
> Do blind people and nearsighted people have the same treatment?
Yes, they both need to see optometrists on a regular basis. They get the same therapy even though a blind person won't get glasses.
It's the same for autism. Someone with profound autism will still see occupational, behavior, and speech therapists. The therapy will be different from what someone with mild autism gets, but the specialists involved will largely be the same. The OT for someone with profound autism can be identical to mild autism because there are many different aspects. Profound autism simply means several aspects have severe problems.
That's my point.
Very similar to how with an oncologist you might have a specialist for your cancer but ultimately you deal with a team that often treat different cancers. For example, people to draw your blood and run labs.
That's why hospitals have an oncology department and not a lung cancer department.
They see the same people but definitely don't get the same treatment. The insurance codes are different and the body of research is different. Putting $1 of research into genetic blindness does nothing for preventing astigmatism, even though patients may go to the same doctor.
Saying that everyone who goes to a therapist, or an oncologist gets the same treatment and therefore should be lumped together is absurd. Most other specialties are moving toward taxonomic differentiation, not away from it.
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 think one of the major mistakes in this was folding in what used to be Aspergers into the Autism Spectrum diagnosis.
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.
I disagree. The problem is that the Aspergers-vs-Autism distinction was largely "looks normal at first glance" vs "doesn't", which is almost entirely unrelated to the many axes of actual symptoms.
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.
Some candidates include: sensory processing (including keen senses, overload, and undersensitivity - sometimes different for each sense!), trauma when unplanned/unexpected actions or lies occur (part of "patterns/routines" in general, but I exclude mere "pop-sci OCD"), difficulty reading facial/social cues (and the sheer terror of how people can read your mind if you meet their eyes).
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.
> if you're still in the "the problem is other people" phase
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.
The thing is even in it's earliest days, there were examples of autistic people able to live independently. The first person diagnosed with autism was employed as a banker.
I’d like to piggyback on your comment to get your (and broader audiences) opinion on a situation I’m facing:
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?
I am way way out of my wheelhouse here. But you asked, so I'll share my experience and opinion in a roundabout way.
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.
The school system needs an Official™ medical justification to grant your kid extra accommodations for whatever his behavioral issues are. They are less interested in whether he "actually" has autism than in a rubber stamp that gives them more options for managing him. Which might indeed be a good thing for your son! It's hard to say without being closer to the situation.
But is it the profound autism or is there something else? I think we actually need to define the term a little differently for mental retardation and bring it back. Is he profoundly autistic with an average IQ? Or is he profoundly autistic and essentially incapable of communication? It's not the autism that's the problem. He might also be autistic but a lot of people started labeling retardation as autism. Which really tainted the term autistic for normal people. So I do actually agree with the shift. Not that they should take anything away from the profoundly autistic. They should offer them more. But there should be a program for that type of person. Assisting them greater than the autistic programs. Autistic help should be more about understanding the internal issues we face on a daily basis and how to deal with them. How does that help someone who can't communicate? The help he needs is probably different and more extreme than what an autistic person needs.
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.
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...