It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person. That's called a partition, and its in an entirely separate thing.
When I tell this to people they understand immediately that I am in fact on that "spectrum".
1. A linear continuum (like wavelength for light) from "no autism" to "really bad autism".
2. A collection of disjoint sets (like individual named colors like "cyan" and "puce") for cases like "really into trains autism", "freaks out at parties autism", "non-verbal autism", etc.
3. A continuous mixture of different properties (like rgb(.1, .2, .05)) for symptoms like "10% social dysfunction", "20% repetitive behavior", "5% sensory overstimulation".
When people describe autism as a spectrum disorder, they generally mean the third metaphor. It's a mixture of different symptoms and different autistic people have different amounts of those symptoms but all people diagnosed with autism have a significant amount of them and their symptoms will have some amount of overlap with other autistic people.
Number (3) has better explanatory powers than (1).
However, for the purpose of assessing social and family impact, it is rendered to (1). Both schools and state (US) programs use (1) to assess if a child qualifies for support. This is not always related to how to parent or educate the child.
Fortunately, the US school system with IEP (individualized educational plans) are developed along (3). (Source: two of my kids have ASD)
None of that necessarily helps in informal social contexts or in professional workplace settings. I think the American Disabilities Act covers reasonable accommodations for people with autism spectrum disorders, though I am not sure if it requires legal disabled status.
Lastly: I met a Native (Navajo) family with a child that seems to me, have some developmental disabilities — but I think they take a very different approach. For one, they don’t seem to have the usual social stigma associated with this, and are baffled why I would suggest getting state support for early childhood intervention. If anything, I would not be surprised if they thought I was, yet again, someone unthinkingly pushing a colonialist worldview.
I don't think it's quite the same as calling yourself or someone else a "friend of Dorothy". People who say they are into trains usually precisely mean they are into trains.
Within the community it's a bit of an in-joke. It's not a coded message or anything, just an acknowledgement that autistic people are disproportionately into trains.
Strictly my anecdotal observation but, as someone who attends train shows regularly, they definitely, absolutely are.
Not an ounce of complaint to be clear. Honestly seeing them flip out and flap around and giggle excitedly is delightful. I'm glad they're having a good time and I'm also glad that all of these experiences have not involved some self-involved asshole leering, criticizing or yelling at them for being happy.
> Also, it is known thing or are "trains" a euphemism now like "friend of Dorothy"?
I meant it only as a reference that one of the common characteristic symptoms of autism is a deep focus on some topic of special interest. In boys with autism, trains, cars, or other machines are a common one.
(1), (2) and (3) aren't mutually exclusive either. It can be disjoint sets and a spectrum, which is modelled by (3), and (1) is a special case of (3) where the other axes are fixed to a constant. But you're right that (3) is the most powerful.
I like this answer, it’s concise and comprehensible, and among these options, (3) exceeds all others. I’d argue (4), (5), (6) and so on are even better, if not all always readily available.
>When people describe autism as a spectrum disorder, they generally mean the third metaphor.
Yes, but that's not what a spectrum technically is.
It's also not a very good idea descriptively, all the various properties people pile into this "spectrum" don't have nowhere equal weight with respect to relative importance to warrant the equal weight they get in such 'diagrams'.
A small difference in quantity can become a radical difference in quality. (Look at what happens if you cool or heat water! Or the effect that small amounts of lag have on UX, it goes from interactive to not.)
i.e. #3 here can be approximated as #2, and this can be helpful.
But the really interesting thing is, with neuroplasticity and skill training, you can make tiny adjustments to #3 which produce a change in the set of #2, i.e. real differences in quality and enjoyment of life.
No. #2 is bad analogy and the way you are describing is misunderstanding of what ASD means as spectrum. It is not RGB, but more like list from tens of different diagnoses - probably ranging to 20 or 30 in number, so more than 4, that colors are offering and that also means more dimensions, but could include more, that some people manage to get as some kind of collection - some people have collected nearly 20 of those to illustrate the problem, that people diagnosed with ASD are similar but at the same time different in their own way. Another issue is because of ASD you do not get to collect other Autistic-related diagnoses, that would narrow your condition.
On top of that, if you have ASD diagnosis, you definitely have other issues that describe your condition more, especially mental issues. Also, some of them are going to change - some can go away, because environment changes or simply because your understanding of issues have changed. A lot of the struggles are because diagnosed people even after diagnoses do not understand what exactly they have to deal with.
The issue is how these conditions are diagnosed - there are some similarities with LGBTQ+ that initially was labeled as a disease. And there is cautious fluidity in labeling because of that as well, because ASD is not completely understood, as we are really in the very beginning on mapping both of our brain functions and DNA - what those genes are responsible for. Also, the number increase of ASD might have other factors involved in the way how we as modern people are using our brains by dealing with all that information that humans previously did not need to do and most probably ASD is species wide change that we are causing as our behaviour has changed, especially when our unwritten beaviour rules are breaking down. When we have to compare this to how species are described, humans alone would be consisting of different species - the only difference why we are not different species is because of mixing.
"Spectrum" works too in that if you take white light and split it in a prism, it is spread out into its separate but overlapping components of light at different wavelengths.
The top comment chain on the front page 'Plane crashed after 3D-printed part collapsed' is nothing more than arguing about metaphors. This happens all the time in just about every story.
> 1. A linear continuum (like wavelength for light) from "no autism" to "really bad autism"
This is the least helpful metaphor, when applied to anything with more than one dimension. "Really bad autism" can describe a multitude of unique symptoms.and is nearly information free, similar to describing someone as having "A really serious illness"
Generally under "really bad autism" is not meant as part of the spectrum of conditions, but a very narrow behavioral problem that parents have to deal with. The difference between what makes autistic person a "really bad autism" also differs for various social situations, so let's not go there...
> a very narrow behavioral problem that parents have to deal with
Let's not define autism in relation to what other people have to deal with. For years, autism has been discussed not in terms of what the autistic person experiences but what the people around them experience. That's kind of BS. Someone else being autistic isn't about you, it's about them.
You're welcome to talk about people with "high support needs", or people who have certain struggles in social situations, but discussing "really bad autism" just reinforces that negative stigma that autistic people shouldn't be thought of as people but rather as problems that "normal" people have to deal with.
I don't think the 3rd metaphor fits. rgb values still points to a single color, which maps back to a single value on a 0 -> 1 or red -> violet continuum. It's more apt to describe it like a multi channel audio mixer. Many different channels ("really into a specific topic", "freaks out at parties"), each with their own value (10%, 20%).
Metaphors often fail though, so it might just be best to say what we mean plainly.
> rgb values still points to a single color, which maps back to a single value on a 0 -> 1 or red -> violet continuum.
No, it doesn't. Wavelength is unidimensional, but color can mix many wavelengths, and RGB is a 3d color system which doesn't cover all combinations of visible light but does approximate the way most human vision works, and is therefore useful as a description for human-perceived colors (and more accurate than picking a single point on the unidimensional wavelength spectrum for that purpose.)
An RGB value points to a single color, but if R is "really into trains" and B is "repetitive behavior" and G is "susceptibility to sensory overload", then it's basically the same metaphor as a multi channel audio mixer, except understandable to a different (and likely bigger) pool of people.
It doesn't have to be exact, but it's counter productive when it is clearly and meaningfully incorrect though. That's the problem with the two dimensional [0,1] scale as well.
That's just the limits of it being a metaphor. Audio mixers also only have a finite number of channels, but are also much less familiar to most people.
Humans range across such spectrum that actually match all 3.
We range from being blind to having exceptional eyesight, so we are all on a continuum.
But there are various subsets, such as color or light sensitivity, far/nearsighted, better tracking of motion or text - and these have their own subsets, such as the ability to scan text quickly (or dyslexia), read a room better or see things that require training (such as the details a race driver immediately sees that you wouldn't). Someone with an issue of vision usually finds himself in a cross of these sets, borrowing tools form one to compensate for another
The same can be said for hearing, for height and weight, and for any other physical, psychological or mental property we have.
(I've always felt it odd that "spectrum" usually refers only to Autism.)
>(I've always felt it odd that "spectrum" usually refers only to Autism.)
It depends where the term is in use, when you get in to more medical like fields then people will use the ASD term to separate it from other spectrum disorders like OCD or different types of schizophrenia.
To be fair, I have a bit different impression from specialists, where ASD as spectrum overlapps with other conditions, like ADHD, OCD, BP and I have a bit of linguistical background to extend and call it spectrum spectrum... also, I'm too lazy for that.
DSM-V [1] describes criteria / symptoms in two groups (caps from document, sorry):
> A. PERSISTENT DEFICITS IN SOCIAL COMMUNICATION AND SOCIAL INTERACTION ACROSS CONTEXTS, NOT ACCOUNTED FOR BY GENERAL DEVELOPMENTAL DELAYS
> B. RESTRICTED, REPETITIVE PATTERNS OF BEHAVIOR, INTERESTS, OR ACTIVITIES
For criteria A, severity is more or less measured by how much social impairment is observed --- that's a measure of social acceptability in some fashion.
For criteria B, the severity criteria is about "interference with functioning in contexts" as well as observed distress of the patient. Interference with functioning can be related to the patient resisting the desired function, but it can also be because the patient is socially excluded due to their behavior.
Although, I should point out clinical criteria in general and the DSM in specific are a formalization of arbitrary judgements that describe observable characteristics grouped into a diagnostic category; this can be useful, but it's not really an understanding of the underlying condition(s), it's a handbook of things to look for when a patient comes asking for help and what things to try to help them. If someone has the same underlying conditions but manages to pass as socially acceptable, they may not come in for help, and that's fine too. When multiple underlying conditions result in similar observable criteria, the DSM gets pretty confused; there's not much in the way of attaching traces and getting debug logs for mental processes though, especially out in the world, so this is the best society has, I guess.
If I persistently ask awkward questions, that might "inhibit social interactions". If my community was tolerant and even accepting of this behavior it might not inhibit social interactions quite as much. They are different things for some behaviors but extremely closely related for others.
A specific behavior could qualify as both unaccepted by society and inhibiting social interactions. But that doesn’t mean that being unaccepted by society and having inhibited social interactions is the same measure.
It is not just about societal tolerance. It is also about autistic person having complete emotional meltdown with yelling abusive things or even hitting things because something was not exactly to his/her liking. You can "tolerate" that, but then you are just allowing someone else to be abused.
And even in milder cases, the "does not understand social rules" is sometimes or even frequently euphemism for what would be labeled as abusive or cruel or simply selfish behavior for non autistic person.
> It is also about autistic person having complete emotional meltdown ... because something was not exactly to his/her liking.
This usually happens when the person's needs have been repeatedly ignored, either because the person isn't aware of their needs, and thus isn't able to communicate them; or because the person has tried to communicate their needs but not been understood; or because the person has tried to communicate their needs and had their needs disregarded.
This isn't unique to people with neurodivergence.
> with yelling abusive things or even hitting things
Eventually communication fails and all that's left is violence. History (and the present day) is full of examples of this happening on an individual, national, and planetary scale.
> This usually happens when the person's needs have been repeatedly ignored, either because the person isn't aware of their needs, and thus isn't able to communicate them; or because the person has tried to communicate their needs but not been understood; or because the person has tried to communicate their needs and had their needs disregarded.
This is not true. Low emotional control is one of symptoms and for many autistic this is just a default response. It is literally part of diagnosis. There is no space for needs or rights of others. This is response to someone putting a cut into drawer wrong way or disobeying one of thousands weird rules the autistic person have for themselves and the world.
This frequently happens as a first response to the situation, before any communication could possibly occur.
> Eventually communication fails and all that's left is violence.
Autistic person being violent is violence as any other. And there was no attempt at communication, because man autistic dont understand why the thing needs to be communicated in the first place. They dont understand other dont see the word the same way.
And even more importantly, it is an emotional meltdown having nothing to do with what went on with communication before or not.
I suspect part of your parent comment's point is that this is an implicit bias in the way the spectrum is defined and thought of, so it wouldn't be clinically defined in those terms explicitly.
In other words, the "spectrum" doesn't exist to capture the variation in the autistic person's own experience - if it did, it would look very different. It's a remnant of a time when autism was seen as just a "problem" for the people around you, and the spectrum measures how much of a problem you are and how weird you are seen by their measure; which does map onto a continuous line in the same way.
That does capture something useful, but only a small part of what autism actually comprises, and is much less useful at capturing the autistic person's own experience of it, and makes it a less useful tool to them than people might assume.
It's not unusual for diagnostic criteria to hinge on the impact the thing is having on your work/family/school life.
Alcoholism, for example - we don't define alcoholism as drinking ≥2 bottles of wine a week, or say that 1 glass of wine a week is part of an alcoholism spectrum.
Instead, we ask whether drinking often interferes with taking care of home and family; or leads to job/school troubles; or has lead to getting arrested.
How much of a problem an alcoholic is for others being roughly equal to how much of a problem alcoholism is for the alcoholic.
> Instead, we ask whether drinking often interferes with taking care of home and family; or leads to job/school troubles; or has lead to getting arrested.
We don't ask just that, and the diagnosis doesn't hinge on those - in fact those account for only 3 (or 4 depending on how you count) of the 11 diagnostic criteria for alcohol use disorder. The others are about the person's own experience with alcohol, the difficulties and psychological problems caused by it to the person themself. And that's for alcohol use, an external behaviour-based problem with a specific narrow scope. Autism is a much wider construct with much more varied impact and experiences, and yet in practice people are placed somewhere on the spectrum based mainly on external interactions and troubles.
Historically this came about because people who were "low-functioning" caused more difficulties to others, whereas "high-functioning" folk didn't - even though they might have comparable amounts of difficulties and psychological anguish internally and in need of similar help too. This simplistic view is changing slowly within the field and with some therapists recognizing it better for what it is, but it's still not nearly as widely recognized as it needs to be.
> It's a remnant of a time when autism was seen as just a "problem" for the people around you
I think it still is the current approach, and is not a bad thing per se:
People can have their own specific conditions, but if they are considered fully functional they will have no business getting clinically diagnosed. It will only be relevant when it reduces social functions, and becomes a problem, so that's the part that will be diagnosed.
To put another way, there is the biological/research part to understand how people work and how they think and behave, and the medical part to "fix" things. The variation of people's experience belongs in the former, the autism spectrum belongs to the latter.
Of course we do this for most conditions: for instance people's voice are all different, if yours is just "weird" but intelligible you won't go get a diagnostic, if half of the people can't understand what you say you might need one, whatever the biological cause is.
As someone who has "successfully" masked for the majority of their adult life, all the while suffering in silence, I can say that this is a problematic take at best.
I am considered a "fully functional" adult from all outward appearances, even to friends and family. I'm lucky enough to be capable (with great internal effort) of typical "normal" things like participating in meaningless smalltalk, holding down a job, and doing all of life's chores just like "everyone else." However, unlike everyone else, I had to practice and endlessly rehearse things in my head to achieve the outcomes I desired. A charitable interpretation of your words would mean that "it's a problem", but who is it a problem for? The folks around me? Certainly not. This is invisible to others. It's akin to running monte carlo simulations of all permutations of outcomes before acting on decisions that others would consider trivial. For years I thought that was what everyone was doing. I eventually learned that "no one" did this, and I trained away all "problematic" characteristics of myself just to keep up the act.
So in lieu of your implications that 'passing' autistics "have no business getting diagnosed", I'd rather propose this instead: seek a diagnosis if your condition is debilitating in any way shape or form and would benefit from treatment, _regardless_ of whether or not your condition is externally visible or even apparent to others. A "fix" should be sought if you are suffering. There is no cure for autism, but there are many programs and medications that can help.
PS That said, it may be unwise to disclose your diagnosis to say your employer, unless you need specific accomodations for your set of symptoms at work. I speak from experience.
I didn't mean to imply masking doesn't come with a disadvantage, and I sympathize with the efforts needed in places where others have no stress.
Still IMHO the bar to treat it as a medical condition is higher than that. To take another example, one can be hyper reactive to dust, and that has surprisingly wide impacts on everyday life. House maintenance becomes critical of course and interior furniture will reflect that (e.g. a long fur carpet and other hard to clean convoluted forms are out of question). It also bars the person from whole categories of shops ans places, old libraries is often a no go, some shops/restaurants using encent or heavier room flagrance will also trigger a reaction. There will be whole categories of jobs that are also not an option.
This kind of predicament will make everyday life a lot tougher and require significant effort, yet IME will not be categorized as a medical condition until something critical happens. Like an asthma crisis that ends at ER for instance.
It is not "fair" in the sense that successfuly dealing with the health/mental issue is kinda taken for granted, but I also understand why we draw a line between conditions the person can deal with alone, and other conditions that require external intervention.
I could "deal with it", until I couldn't. When a seemingly fully functional person with no warning signs suddenly breaks down (often catastrophically), providers scramble and tend to misdiagnose since they're missing key criteria. Without a formal diagnosis, it can look like severe depression or psychosis or a number of other similar conditions that have very different treatment plans. Autistic burnout treatment is something entirely different, although it can present the same. A prior diagnosis would at least point them in the correct direction for treatment.
Has social acceptability in any context ever been defined, beyond say, rules of etiquette? It's a free market and everyone is arguably entitled to test to see what it will bear.
The entire nature of the field of psychology and mental health treatment is relative to pain and dysfunction.
If people fit in well and didn’t have issues (either internal pain/suffering or society interaction pain/suffering), they are not applicable to the field.
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person. That's called a partition, and its in an entirely separate thing.
Hmm, what are these 'colors' in your framing? I don't think anyone feels that ASD comprises totally distinct, 'disjoint' descriptions. It's true that there are multiple parameters along which one may vary, but that's true of any human syndromic disease, and probably true for any human disease, in general.
Here's a popular press article that talks about a very recent framing of autism that uses clinical and genetic data:
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person.
Wasn't Newton making the point that we normally perceive and treat colors as qualitatively different, but that they're in fact caused by a single underlying mechanism that can take on any of a continuous range of quantities?
Thus using the term "spectrum disorder" would be making precisely the same point, to describe a set of apparently qualitatively different disorders that are in fact caused by some underlying mechanism with a range of quantities? (To be clear, I don't know if any so-called spectrum disorders actually meet this criterion, and it's probably more complicated than that, but it seems to be the reason the term was chosen.)
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors"...
I get what you mean but I feel compelled to point out that colors are on a spectrum. A partition can be a quantized spectrum.
GP’s concern is that the quantisation scale is not representative of linear severity. It’s more like classification of disjoint characteristics tagged with colour
Numerous people don’t realize this or that there’s not some simple consistent blood test to say “yep, he’s got autism.”
Moreover, people have no idea how difficult this makes it to properly test anything related to it because control groups are so difficult. It’s why any type of study that claims something does or does not, definitively “cause autism” is highly unlikely.
You can identify potential contributors, but that’s about as good as it gets.
People in absolutes about this stuff can’t be taken seriously.
What you are witnessing is the process of "mystification" where it requires an "expert" annointed by some organization to interpret arbitrary criteria to make a politically or economically important determination that can't really be challenged on any objective basis. Since you are not an "expert", you are not permitted to do your own research and therefore by rule are incapable of being able to access the special mystified knowledge that only the "expert" has access to.
If no outsider can't explain why the expert is right and the non-expert is wrong, besides saying they're not an expert, then it certainly has the appearance of being a mystical power of the expert. After all, mysticism requires only faith in the mystic prophet to be true.
There's a whole genre of viral social media posts that amount to lumping anyone who appears to have cared quite a bit about something that's not obviously exciting (to most other people) into the autism spectrum. Especially historical figures. "This guy made tons of detailed beetle drawings and cataloged them in books! See, there have always been autistic folks, because he definitely was!"
Like I mean maybe, but also he was a bored rich aristocrat before TV was invented, and sometimes there are no parties going on or everyone's hiding in their country estates because of a cholera outbreak or whatever, and "making shitloads of drawings and organizing them" was like 50% of scientific work at the time. So. Maybe he just had a lot of time to kill.
Going by randos posting online, "liking things" and "knowing stuff" and "caring about things" are all autistic traits when present in any but the tiniest of degrees. It's ridiculous.
It's getting a tad out of hand. A friend "jokes" that I'm on the spectrum fairly often any time I speak with any sort of passion on topics in interested in or care about.
I feel social media has conditioned people to think of you're anything other than bland and "normal" in your personality and have any degree of uniqueness about you then you're on the spectrum.
I generally try to avoid tossing disorders around as a way of describing personality, because I don't want to trivialize somebody's experience for whom that disorder is very troubling.
Actually, I'm allowed to be persnickety about language without it implying a diagnosis of any kind.
But I thought it was kind of funny to share it the way I did, so I made an exception.
Perhaps this is just a different mental model thing, but in a spectrum each of those colors would be, maybe, a frequency of light or maybe even a range of frequencies measured at different intensities. Autism might be thought of as a band in the larger spectrum (think of the infrared or ultraviolet spectrums as subsets of the electromagnetic spectrum), and any one person might emit a different spectrum, like a combination of these different colors. An autistic person, specifically, would exhibit higher intensities in that named spectrum, and conversely the spectrum is identified as a part of the larger spectrum of human experience where people often show similar combinations of colors.
It's always going to be a metaphor, but that's the way that I best understand it.
Isn't a spectrum limited to a single dimension? If yes, that doesn't sound like Autism disorders (Asperger's, ADHD, verbal, non-verbal, violence, exacerbated sensitivity, social abilities...). They all suggest that there are multiple more or less independent/orthogonal. dimensions. And everyone scores differently on the combination of these dimensions. Which puts us on different coordinates in a vector space. Is this still a partition?
It definitely acknowledges our biases better than "spectrum", although I think they want varying degrees of each component, and we don't usually take a little of this star and a little more of that one.
I might've recommended "palette" if asked before spectrum got traction.
Or maybe we don't need a better word at all, maybe we should try grouping the characteristics differently such that they're no longer all together under the same heading. (I'm not qualified to say, just a hunch).
This is a misconception I see pop up frequently online. In terms of the color spectrum, there are plenty of things—even things that have qualities in common with color—that aren't on the color spectrum. And while there are colors outside of what humans can see, we generally use it not to refer to the entire electromagnetic spectrum, but only to the subset that makes up light visible to human eyes.
Likewise, when we talk about the "autism spectrum," we're not including every exhibition of traits associated with autism. You can have some traits associated with autism without being "on the spectrum."
Also, perhaps as importantly, "spectrum" isn't a term that generally applies only to color, or even electromagnetism.
I would argue that for the average person, therefore, 'spectrum' is an unfortunate choice of analogy, since most people believe that it encompasses every possible color. One should not need specialist knowledge to discuss an issue of this kind in common terms.
The more correct way is to think about it as a prisms. It is multi dimensional.
Also it is for autistic people. It grinds my gears when people say "everyone is on the spectrum", no, just no. Again it is only for autistic people and you need to have support needs to be diagnosed with autism. You don't get a diagnosis for being quirky and a little weird.
And no, just because someone is verbal and seems to be very articulate does not mean the person has low support needs or vice versa.
I find this take quite challenging, although I know it is one shared by a lot of autistic people.
I understand that if a person has no support needs, they cannot be diagnosed with autism. But that person may still be neurodivergent, and therefore to me it seems to follow that you have folks who are autistic with high support needs, and folks who are autistic with low support needs. Then, you have neurodivergent folks with no support needs. But this seems to me like a difference in degree, rather than category, and which would mean that the “spectrum” analogy works quite well.
With a clear understanding that I am not trying to minimise the struggles autistic people face, a sincere desire to learn, and an open mind, would you mind trying to help me understand?
Autism is something you are born with. It is simply who you are.
Support needs can change over time. You can need less help because you learn better coping strategies and have a stable environment or you can need more as you get older. It is not fixed.
Support needs are denoted in level because that is what system like schools and the like need. They don't really map to reality. Like for example a autistic person can have really bad sensory issues, being really sensitive to sounds, restricted diet and the like but decent social skill. Another autistic person might not have any sensory issues but really struggle with social stuff. Who needs more help? They need different kinds of help.
Thanks for replying! This above fits in much better with my previous mental model of autism: it’s intrinsic, it describes a “difference” in someone’s way of experiencing the world.
I’m still struggling to understand how this meshes with what you said above about only being autistic if you have support needs.
I don’t understand what implications that would have for someone who (for example) develops enough coping strategies that they no longer have any support needs. As far as I understand it, there’s no way to “cure” autism, so those folks would still be autistic but without support needs, which doesn’t seem to fit?
I don't think having zero support needs is realistic. If you have for example sensory issues like being sensitive to bright light or having trouble eating certain food then this doesn't go away. And just living in a world made for neurotypical people will always be a bit distressing and cause social problems.
Yes, there is a bit of a contradiction in advocacy because on one hand we want to spread awareness about the natural diversity of how humans brains work and remove prejudices and celebrate that diversity but also we don't want to minimize that it is a disability and people do need help.
> you need to have support needs to be diagnosed with autism. You don't get a diagnosis for being quirky and a little weird.
The problem is the people who actually have support needs are often not in a stable job with great insurance, and then they don't have access to the "get an official diagnosis" machinery. At which point you have to choose between respecting a self-diagnosis even if they're often wrong, or not respecting it even if they're often right.
It is still important to get a official diagnosis if one can but yeah the reality is that it can be a very long process and not in reach for some people.
The more helpful way to think about is that the neurotypical brain is like RGB(63.32, 12.3, 73.02) but with thousands or maybe millions of variables. If certain values are significantly lower or bigger it might cause you trouble.
Having Autism is one cluster of values you can have. So is having ADHD. So is having Trauma. And many more things. And you can and often have multiple things at once and their symptoms overlap.
Everyone is on the spectrum, but only some are diagnosed with autism spectrum disorder. So there’s a tipping point or dividing frequency in the spectrum that moves people into disorder.
Having Covid is a spectrum from having nearly no or even no symptoms to having really bad symptoms. Just because everyone experiences having a running nose from time to time, does not mean everyone has Covid.
Autism is not the only way your brain can be different from other people.
Not exactly - there are very clear areas where everyone agrees the dividing line exists when you look a full spectrum map. Even most colorblind will agree with the areas in general (there are lots of specific color blind types but most will agree what area of the map is which colors even if you don't put any scale indications on the map)
No. Babies don't know how to color bin. They learn the color binning of their language. There are a few languages with different color bins and people who grow up in those languages bin colors differently--having a hard time telling apart colors we obviously see as different (but which map to one bin in their mother tongue) but telling apart subtle stuff we see as one color but they see as more than one.
Within a particular culture that may be true, but for example the Japanese concept of blue/green is decidedly different from most Western concepts which consider blue and green separate colors.
I argued over a color names with a guy who later admitted he is color blind. So, no, we don't agree on zones. I mean, it was rather clear he is off. Basically, he has seen different color.
It is because how system works. You might be upset about label, but this is least worry for me but even people with great ability to perform as part of work team and no ability to form relationships need that help to get back into workforce and figure out what is actually going on with them.
Actually, the original word has nothing to do with continuity. That's a later adoption of it from Latin to English. So to be precise, you don't need continuity. It's just a re-adoption of the same word form the original Latin.
But many without autism don't have that need for precision so they get confused by mixing up later word use in different contexts like you did there.
The present day meaning describes a continuum. The term could indeed be defined in the anachronistic terms you describe so it is anachronistic, which is a reasonable complaint when something enters common usage. We see terms redefined all the time thusly
UPDATE I have exceeded my grace with HN spam controls
The confusion arises from the direct import of a medical Latin term which means what it means in Latin, into the modern colloquial- this is important information
Well, if one is being pedantic about a loanword one must admit the possibility of the word being loaned twice with different meanings. If one doesn't want to be pedantic, all manner of things are admissible, of course.
My dad likely had Asperger's. (Undiagnosed, but pretty much 100% he did). I have close friends with children who are very autistic. (Not completely non-verbel, but they say very few words and are still more likely to have a screeching meltdown than talk.)
My dad was highly successful; a leader in his industry and did a great job supporting us. His life was relatively easy (as easy as life can be in general) and he was a contributing member of society.
We love my friends kids to death and they do have many positive things going for them, but they will likely never be able to live on their own. Even if they do, they are in for a very hard life. They will likely always need to be supported by family and will likely never be contributing members of society.
To lump both those together is insane. It drives me crazy when people who are functional members of society run around laughing about how they are "autistic". I can't think of anything more disrespectful to those who can never have a "normal" life.
With that being said, I do recognize that medically there is a spectrum. I, as someone with ADHD am likely on that spectrum somewhere as well, from how the science is sounding these days. We need to make this spectrum obvious and respectful though. Why can't we classify a level or something? For example "Autistic level 1" for Asperger's, "Autistic level 2" for barely verbal, "Autistic level 3" for non-verbel... Something like that, so we can unite the cause, but still differentiate the effects and potential outcomes.
> It drives me crazy when people who are functional members of society run around laughing about how they are "autistic".
A lot of us low-support-needs autistic people are functional members of society right up until we aren't (i.e., until we've been masking for too long while dealing with sensory stressors and One More Little Thing pushes us into the "screeching meltdown" or renders us temporarily nonverbal). And a lot of us have "normal" lives only in as much as you only see the normal parts.
It's kind of fair to divide things up by support level, but you then also have to understand that there are a lot of different support needs people have and they can look very different at the same "level".
These levels exist since the DSM-5, which is not yet in use everywhere:
The DSM-5 introduced three ASD levels of severity: level 1 (“requiring support”), level 2 (“requiring substantial support”), and level 3 (“requiring very substantial support”).
The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.
I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs (e.g. severe intellectual disability, nonverbal, severe self injurious behaviors). Those autism are very very different with very very different lived experiences....and yet, well-meaning autistic advocates often bristle at that idea, almost as if it is an attempt to divide and and destroy autistic advocacy. The neurodiversity vs profound autism battle for hearts and minds continues to rage, and even threatens how and what autism research gets conducted...sometimes with good consequences, sometimes with poor consequences.
I am a proponent of finding neurobiological bases for subgrouping autism into different clinically meaningful etiologies so that the debate can move forward productively. Its one reason that more and more I'd rather forgo acquiring non-autistic controls in my studies, but just look within the autism sample for how to parse the heterogeneity into homogeneous subsets
> I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs
You think a parent without any autism is more qualified to speak than someone who has autism but a different cluster of symptoms? Because being a parent makes you an expert on what exactly?
The is a video of the spokesperson of autism speaks. Her autistic child is in the room and can hear everything. She talks about how bad it is for her to have an autistic child. How she wanted to kill herself by driving down a cliff. Again, while her autistic child is in the room. She is acting like her child is not even a person.
Autism Speaks is a hate group of abusive parents.
Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Not by speaking for them but by taking down barriers so that they can advocate for themselves. Because guess what? High Support needs autistic people are still people.
Just because someone is non-verbal does not mean they can not communicate in other forms. They can advocate for themselves if given the tools.
Support needs are multi dimensional, one person might have sensory issues, another no sensory issues at all but more social issues. Who has more support needs? They are different. And they can change. You can learn better coping skills, you can need more or less support as you age.
1. I am not claiming that low support-need autists cannot advocate for hight support need autists. I am saying that I have encountered little evidence to support the idea that low support-needs autists have more insight into the needs and interests of someone who is nonverbal, intellectually disabled, and has severe self-injurious behaviors than others, including those who know and support those individuals daily.
2. Sometime being non-verbal is about trouble with expressive communication. But for others, it is an all encompassing impairment and communication, if much at all, has huge subjective/interpretative component by the observer. fMRI in these indivuals show near absence of activation differences for contrasts between passively listened to language and random noise. They absolutely cannot advocate for themselves, and to not understand this, which occurs in 10-20% of autism, suggests a blindness to the full spectrum, because those people are not seen, they are not on Twitter, they are at home with their loving and hardworking caregivers who should have a seat at the table.
The parents you talk about just seem like assholes.
> Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice.
Having low-support-needs autism is neither necessary nor sufficient for being a good voice for others. In fact, it can be a very bad thing, if they imply that the problems they face are similar to problems faced by high-support-needs folks. The focus in the media on low-support-needs individuals gives people the wrong impression of the autism spectrum's individual experience and broader societal impact.
I think a better form of advocacy is the YouTube channel "Special Books by Special Kids," which doesn't make a point of the channel's author having a disability (no clue whether he does), but rather just introduces viewers to a broad variety of people.
I'm pretty sure, that parents, that have autistic kids have not only autistic genes, but also some autistic behaviour. My mother is not diagnosed and she is quite unhinged female and sometimes also very logical. And she also have been talking about me crap with other people, so it perfectly describes autistic parent.
Unfortunately, but the main issue is that people, that are trying to take control of talking space are acting like humans do and in autistic circles they are most efficient at taking over... also, the obsession levels in activity is quite high, as that is topic that they are interested in.
> Autism Speaks is a hate group of abusive parents.
It's an indicator of the current state of affairs in the social media autism space that the only organization focusing on reducing the suffering of individuals with higher levels of dysfunction (i.e. requires lifelong support for basic needs) is demonized to this degree. Though it also makes sense as the most disabled autistic individuals do not post online.
It’s understandable that people with a milder form of autism would find it reprehensible that people want to “fix” them rather than simply accept a different type of person exists, but this really just ignores people at the harshest end of the spectrum who might be able to live an independent life if a cure were developed.
That’s kinda the whole argument behind more subgroups. Mild autists don’t need a cure. A subgrouping would help explain this.
There are plenty of conditions which are just “part of who you are” that still probably should be cured if possible, if for no other reason than to improve their quality of life.
This is a complete lie. Autistic advocacy group care a lot about people with higher needs.
Meanwhile autism speaks spends money for anti-scientific research to find out whether vaccines cause autism and how to find a "cure" for autism. Such a cure can not exist. Autism is something you are born with and that is part of you.
If you knew anything about autism then you would know that we speak about levels of care needs, not "low/high functioning". So either you are ignorant or did choose to use hurtful language.
> Such a cure can not exist. Autism is something you are born with and that is part of you.
Signs of autism generally show up in early childhood, but it has not been proven that it is something a person is born with. Vaccines have been studied enough to rule them out, but there are still a zillion other things that babies today are exposed to that could be a factor, from antibiotics to endocrine disrupting chemicals to microplastics to viruses or even something we're not even considering medically today.
Also, tons of birth defects and inborn diseases can be cured. We cure cleft palates and spina bifida routinely. We manage diabetes and Phenylketonuria effectively enough that patients can live regular lives. Here's a paper published in the prestigious Cell journal covering 700 different genetic disorders which can be treated today: https://www.cell.com/ajhg/fulltext/S0002-9297(25)00110-7
It's possible that in the future autism will have a cure, a preventative measure or a highly effective treatment.
there's a bunch of BS going on with autism that I find very obnoxious
1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that.
2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too.
3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.
I think “neurodivergence” is a better label if the goal is gaining strength in numbers. It fully encompasses autism and autism spectrum related conditions, plus ADHD and others. A lot of people don’t want the label “autistic,” but share experiences with people who do, and would love to offer solidarity as an “inside” rather than “outside” member of the community. We now have “AuDHD spectrum” as a thing, but really, I think optimum numbers might come from including folks who identify as “broadly neurodivergent.”
It also leaves room to start distinguishing/separating out more subtle variants of what we currently umbrella as “autism,” perhaps making it better defined in the future. And I kind of suspect doing this with “less profound” neurodivergencies could help folks with “more profound” (and rarer) cases.
To look at a historical case: Gay Rights didn’t make a lot of headway. But adding lesbians, trans folks, etc. ultimately did a lot of good for that community in the US.
I was recently labelled neurodivergent by a colleague at work, as far as I can tell this is simply because I am good with numbers and don't like parties. I'm not sure how I feel about this, I wouldn't say I am Autistic or show any representative characteristics.
Autism or well any form of neurodivergence are about how you work on the inside. It is not possible to observe how a person behaves and just diagnose someone. That is why getting a diagnosis is a whole process involving a trained professional.
Your colleague is full of shit. Generally, neurodivergence is for everyone who regularly experiences that the way their brain works causes them trouble.
Self diagnosis is surprisingly accurate but people also tend to under estimate the severity of their symptoms.
Or so you think. Humans aren't any good at that whole "self-awareness" thing.
Even the "no empathy" sociopaths can spend decades thinking that they're perfectly normal, everyone is like them, and people just pretend to be sad and grieving at the funerals because that's some kind of established convention and breaking it would be very rude.
What I'm saying is: maybe you just think you don't show any signs of autism - because you think your experience is "normal", and you think that everyone has the same struggles as you do, even when it isn't true.
Or maybe you genuinely aren't autistic at all! It's just very, very hard to say at a glance.
> The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
Seeing it as one single conditions is established scientific consensus not some advocacy thing.
The diagnosis "Asperger's" was invented by Hans Asperger, a Nazi scientist that was responsible for the murder of many autistic children. It was never about science. It was invented because he thought that some autistic children might have a potential to become scientist and the like and therefore useful to Nazi Germany and some might not.
Hans Asperger decided which autistic children should be murdered and which one to be spared purely based on ideology.
Autism is something you are born with but support needs can change over your life depending on many factors like you environment, if you are diagnosed early and so on. They are not fixed.
> The diagnosis "Asperger's" was invented by Hans Asperger
No, it wasn't. The diagnosis of “autistic psychopathy”, which loosely corresponds to much of the range of the modern diagnosis of autism spectrum disorder was invented by Hans Asperger (Asperger does not seem to be the first to have described the condition, though he invented that name; a Societ doctor seems to have recognized a similar condition a couple decades earlier.) The distinct separate diagnoses of “Asperger’s syndrome” was invented later (the term seems to have first been used in 1976), and roughly corresponded to the “higher-functioning” individuals within his diagnosis of “autistic psychopathy” that Asperger described as potentially socially useful.
This is highly accurate.
Presently its a whole set of entirely different diagnosis make up
"the spectrum".
They even eliminated "Asperger" and then just folded that into the
spectrum as well.
I sometimes think about two women sitting on down on a bench.
Once says a bit uneasily "my son, well he is on the spectrum"
The other responds with "Oh I know what you are going
through my daughter is also on the spectrum"
At this point neither has any idea whatsoever about
what the others experience is like.
One may be highly functional, socially awkward and doesn't think
like normal people and processes sight and sounds the same.
I find myself moderately down this path.
If you have met one person with autism you have met one person with autism.
This is true for anything else and no argument against the current diagnosis.
There are people with Covid that ended up in the hospital and people with Covid who barely had any symptoms. Both have Covid.
Autism doesn't work from "little autism" to "a lot of autism". One person can have strong sensory issues but decent social skills. Another bad social skills but not sensory issues at all. And care needs can change over your life, they are not fixed.
The crucial difference is that we know the etiology of COVID and so are justified in treating those two people as having the same disease. Autism is much more complicated because we don't have a thing to define it other than a bunch of disparate symptoms.
It might turn out like if we treated the cold, COVID, tuberculosis and lung cancer as the same thing because they all involve coughing.
Furthermore we employ differential diagnostic and check whether your symptoms could be better explained by another condition. You don't just diagnose people with autism because they have a few symptoms.
Furthermore autistic people can generally relate to each other. Even if two autistic people show very different symptoms there is often a feeling of belonging together.
It is always possible that we will learn more in the future and maybe we will have other diagnosis criteria or discover some people currently diagnosed under autistism would fit better under something else.
However the current diagnostic criteria for ASD is the current state of our scientific knowledge. A lot of clinical research is baked into it.
> It might turn out like if we treated the cold, COVID, tuberculosis and lung cancer as the same thing because they all involve coughing.
Well there are 200 different viruses that cause the common cold. We lump them together because they all involve coughing.
Basically all cancers are unique, even for the same type of cancer. Again, these are lumped due to shared symptoms.
Tuberculosis is caused by 9 different species of bacteria, but these are at least related species.
Covid is basically exactly the same disease as SARS, just caused by a particular strain of coronavirus, though that strain divereged into multiple ones that now produce quite different symptoms. In addition to SARS, other coronaviruses are among those 200 that cause the common cold.
Diseases are historical groupings that someone at some point thought would be useful, nothing more.
I’ve long thought that autism is basically a few thousand very normal, small neurodivergencies (which may each be compounded with social effects). The absence of any of them is “perfect functioning human cog/prime chunk of workmeat.”
The presence of too many/particular ones of them is notably disabling for certain tasks, or makes perceiving some things difficult (and other things easier). But I think the presence of some is preferable to having none, and implies “can think abstractly for/about oneself.”
(And yes, a lot of the “problems” that arise with folks on the spectrum happen because, well, being aware of yourself as a cog/workmeat creates friction… It’s important to keep in mind how much of our history of psychological medicine that created the label “autism” is ultimately oriented towards “fixing the cog/workmeat.”)
I agree with your take but interestingly it seems to be both an argument for, and against, calling it a spectrum. Humans are so good at adapting/conforming/masking, and we adjust ourselves toward a common accepted way of behaving, which further confounds the difficulty in understanding the problem.
I think the "spectrum" analogy has reduced stigma overall, especially toward people with poor social skills. But it isn't always helpful.
> presence of too many/particular ones of them is notably disabling for certain tasks
Setting asside the very clear science of neurodevelopmental causes, in practice your description is very helpful way to describe it.
(Ive often myself described it as a standard deviation beyond 2 sigma in a normal distribution with 500 dimensions.)
The traits associated with autism are naturally present in the population in healthy and useful ways.
Matching a large fraction of the definition may pose no problem for alot of people. But another smaller deviation in another sub permutation may be detrimental to live a normal life.
So it's really difficult to draw a line between "condition" that need assistance and just outlier human that like trains.
I mildly match a significant fraction of the diagnostic criteria myself, but have had a rather easy time. I don't need special resources, and feel wierd to count under a medical term.
But recognising the traits of ASD had allowed me to find quite a lot of good practical advice that improve my life significantly. So the broad definition has been helpful.
Yeah I agree. I see it something like this as well. I often feel like calling it an "illness" or even "disability" is kind of a misnomer, because having traits that are encompassed by the definition of "autism" are often actually strengths and advantages (to an overwhelming extent, not in just some weird edge case situation).
Approximately 50% of people with autism have intellectual disability.
The people without intellectual disability are more convenient to recruit for studies. As a result, across a wide variety of studies on autism, only 6% of autistic participants had intellectual disability.
Autism isn't a symptom because Autism Spectrum Disorder isn't a singular "thing" it is a combination of features that manifest in various "symptoms" - eye contact avoidance (or the opposite), sensory processing (over- or under-stimulating), restrictive interests (singular focus), etc.
A stomach ache is a single manifestation of something happening. A stomach ache can have varying degrees and reasons behind it. The stomach ache is the signal. The disorder that causes it could be psychological (GAD) or external (someone punched you, and the flesh is bruised) or internal (someone fed you a weeks old egg salad sandwich).
In autism the 'symptom' could be model train enthusiasm or being nonverbal. There are a lot of symptoms the fit under the umbrella of the disorder.
From my lived experience and also from the preprint I love very much https://www.thetransmitter.org/spectrum/untangling-biologica... the autism spectrum is basically a collection of ways a brain can largely work differently than "normal". There's a limited number of these (4 according to current research). It's not that there's just individual small features that manifest in things like eye contact avoidance, over/understimulation, etc. it's that the entire brain will work a specific differently and result in a certain set of symptoms consistent with an autism diagnosis. I feel like autism helps form the basis that other neurological differences happen on top of, because it has such a large impact on how thinking and learning even works in the first place. Even in conditions like schizophrenia, psychosis, etc. you see thought loops or detachment from reality or delusions or any number of those kinds of dysfunctions but it all still happens on a base where there can be basically one of the four autisms; the autism seems to be a difference in the foundation that the rest of the brain is built on top of. It's very fascinating to me (I am very autistic). Of course I don't mean to say at all that each autistic type always results in the same brain function but just that usually other difficulties or differences are less fundamental than how autism changes practically everything.
I definitely agree. It shouldn't be "autism spectrum", it should be "autism syndrome".
When we have a cluster of symptoms that travel together we can see there's an underlying issue without knowing what that underlying issue is. And we normally use the word "syndrome" for that. For example, AIDS or IBS. And society tends to dismiss it for as long as possible because to face it is to admit there's a problem with no answer. For an example that's still in the denial phase, look at long Covid. There's clearly something there, like AIDS it's a slew of apparently unrelated issues. Which says that, like AIDS, there's probably some underlying issue that is itself very hard to see and we are only seeing the secondary effects.
To me autism is defined by how some of our genes work(or doesn't work). I'm not into analogies, but the difference between normal Aspie and nonverbal person is not that big - by using your analogy both of them have stomach pain, but the result seems to be wildly different - one of them is able to communicate almost like other normal humans and they can't even tell that Aspie has a stomach pain.
As for different medical conditions - imagine, that previously mentioned Aspie in different environment can have stomach pain, because it is caused by environment and not by stomach pain. Yes - there are some medical conditions, that also comes from genetical conditions and those just happen to be in neighbourhood to autism for no other reason than just general damage to DNA. And the issue here is that we actually do not fully know how DNA functions - only some of the bits.
I didn't realize these archive links were still working. Ever since the FBI order in November, these links have just been hanging for me. https://downforeveryoneorjustme.com/ had been saying it was down so I just thought it actually was down for everyone, but I continue to see these links posted. Is the site still working for some people?
The blocks tend to be implemented at the DNS level, so you can usually connect by using a different DNS server. The Tor onion link works fine as well, and that URL is on the archive.today Wikipedia page.
I’m kind of glad it’s happening so that folks here have to reckon with being the world being full of copyright trolls rather than having some easy “let the nerds have it only for us” solution.
I think the popularity of the description of autism as socially awkward supergenius hurt a lot the children with the variant "I can't tie my shoes or even speak" and their family
I'm concerned that the identification of genetic subtypes of ASD, as mentioned in the article, will lead to more terminations of pregnancy. We need people that see the world differently.
There are 8 billion people from a multitude of backgrounds and experiences. We’ve got plenty of viewpoints.
People get abortions because it’s financially inconvenient or a bad time or something else trivial constantly. Surely a lifelong affliction isn’t that hard to understand the motivations behind.
The most easily identified "autism genes" (eg "fragile X") tend to lead to severe variants of the condition, which probably don't benefit anyone. We may eventually have a "Gattaca problem" but this isn't that, at least not yet.
You are obviously a male - when it comes to providing best genes from rich individuals, there seems to have been no shortage of females that wanted to have babies from Elon Musk with his autistic genes...
I am forgetting how serious ASD people can be without having able to make any jokes. Relax, dude - by the time when government will be able to provide such services, all the humans will have autistic genes - there clearly are some natural advantages to people, that are multiplying with those genes and spreading them around. And unfortunately to say this, but natural selection is the only thing that will weed out those so called "heavy autistic cases" and they will cease to be a problem in time.
Yup, autism spectrum tends to strongly mess with your ability to find a romantic partner. And that is decidedly selected against.
However, I don't think the random nature of evolution will have a meaningful effect on humanity going forward. We will soon reach the point of selecting for more desirable genes. Done badly it would be Gattaca.
> Robert F. Kennedy junior, America’s health secretary, thinks that autism has become an “epidemic” in his country. His concern stems from figures from the Centres for Disease Control and Prevention, which shows that the condition now affects 32 per 1,000 eight-year-old children in America (see chart). That is in contrast, he says, with the near-absence of the condition in his childhood. Mr Kennedy was born in the 1950s, and studies estimate a prevalence of autism to around two to four per 10,000 in the 1960s.
Read any old book (like from the 1800s), or look into anyone's family history. There is always some version of "Larry never leaves the farm". Nobody every diagnosed "Larry" so we don't know what he had and often we only have a small fraction of the symptoms recorded, but what we have sounds suspiciously like Autism (and one of a dozen other things we now have names for)
> The tunnels under the estate were reputed to have totalled 15 mi (24 km), connecting various underground chambers and above-ground buildings. They included a 1,000 yd (910 m) long tunnel between the house and the riding house, wide enough for several people to walk side by side. A more roughly constructed tunnel ran parallel to this for the use of his workmen.
> The duke was highly introverted and well known for his eccentricity; he did not want to meet people and never invited anyone to his home. He employed hundreds through his various construction projects, and though well paid, the employees were not allowed to speak to him or acknowledge him.
> He ventured outside mainly by night, when he was preceded by a lady servant carrying a lantern 40 yards (37 m) ahead of him. If he did walk out by day, the duke wore two overcoats, an extremely tall hat, an extremely high collar, and carried a very large umbrella behind which he tried to hide if someone addressed him.
> He insisted on a chicken roasting at all hours of the day and the servants brought him his food on heated trucks that ran on rails through the tunnels.
I think this explains at least some of it. In my childhood (1970s) as best I recall, these kids were hidden away. They went to separate special education schools or a separate classroom in the main school and didn't really mix with the rest of the kids. Today the attempt is made, for better or worse, to mainstream everyone as much as possible.
It still feels like there is more autism today compared to then though. I would guess that it's some combination of more people waiting to have kids until they are older, environmental factors, mania about cleanliness and sanitizing everything, maybe social factors such as putting more kids in daycare at a very young age, IDK. I'd say the same thing about asthma and food allergies too, seems that half the kids today are allergic to something, need inhalers, etc. It was unusual among my friends as a kid, at least I don't remember it being common.
(read the other replies first, they make good points)
I knew plenty of kids in the 1970s that were "a little off" (probably including me), but they were not so bad that we would remove them from society which was the only option back then so we called them normal. Now that we have treatment we give it not only to those so autistic that they can't function in society at all, but also those who could function but not well and treat them.
No real argument, but I'm not talking about that long ago. When I was a kid, lots of parents smoked, in the house, in the car, everywhere. My father did. Yet I don't remember any of my friends having asthma or using inhalers. Peanut allergy is very common today, among my kids friends, several of them had it. Was almost unheard of when I was a kid, schools served peanut butter often at lunch. Nobody was ever asked what food allergies they had.
It's possible my anecdotes are not representative, but this is just what I have observed.
I think the argument still applies on a shorter timescale. The child mortality rate in the US fell from 26 per thousand in 1970 to 7 in 2020 [1]. It seems reasonable that some portion of kids that now have treatable but persistent illnesses such as allergies/asthma would have died just a few decades ago.
> Asthma was recognized in ancient Egypt and was treated by drinking an incense mixture known as kyphi. It was officially named as a specific respiratory problem by Hippocrates circa 450 BC, with the Greek word for "panting" forming the basis of our modern name. In 200 BC, it was believed to be at least partly related to the emotions.
Peanut allergies might be caused by poor advice in some cases. There was a period where people believed that babies should be protected from any food allergens, in case they were allergic. Later research suggested that early exposure to allergens might actually prevent allergies.
You don't notice nearly as much as a kid as you do as an adult; nor do you get a representative picture of your friends.
Beyond that, there's a question of, while maybe they didn't have an inhaler, how many needed one but didn't get one due to awareness or whatnot? Or how many people had allergic reactions, because we didn't ask about their allergies?
> I think this explains at least some of it. In my childhood (1970s) as best I recall, these kids were hidden away.
Depends. My childhood was in the 70s. Autistic kids with low support needs were labeled "gifted" and sent to the "gifted program" classroom one day a week. Autistic kids with high support needs were labeled "retarded" and kept in the special ed classroom all week.
In the 1970s it was still easy to just abandon the school system. Kids who didn't obviously thrive were usually treated as family burdens, and still mostly removed from society.
They also usually died young.
People with ADHD for example, are more prone to abusing drugs and alcohol. How many people died from alcoholism who were untreated ADHD cases?
>It still feels like there is more autism today compared to then though.
This is objectively true, do you know why? We changed the name of really poorly functioning people in some cases from "Mentally retarded" to "Autistic".
That's it.
Look at a graph of generic "mental retardation" diagnosis and it's fall coincides with the "rise" of autism diagnosis. Those people were always actually autistic, but we did not have the institutional knowledge and tools to know that, because the science of psychiatry and psychology is still in its infancy and struggled with rampant a-scientific thought even into today. Jordan Peterson for example is a "Jungian" trained psychologist even though that's not science, and he was fired when his college discovered he was leaning more on that unscientific worldview than actual hard science in his college courses.
>I'd say the same thing about asthma and food allergies too, seems that half the kids today are allergic to something, need inhalers, etc.
The food allergies is real because a bunch of doctors were "nervous" about babies with peanut butter allergies, and without any scientific study or consideration, spent over a decade recommending parents not expose kids to peanuts.
Now that we have actually done the science, we know that was dead wrong, completely irresponsible, unscientific, and directly responsible for something like 8 million fully preventable peanut allergies. That's what happens when you let even medical professionals use their "intuition" rather than hard data. This is why medical studies blind those professionals. Doctors are not usually scientists.
There is no education that removes human biases and cognitive missteps, and it is impossible to cure yourself of the standard human fallacies. Statisticians can still become gambling addicts, and can still suffer from gambling fallacies when not being rigorous.
>I would guess that it's some combination of more people waiting to have kids until they are older, environmental factors, mania about cleanliness and sanitizing everything, maybe social factors such as putting more kids in daycare at a very young age, IDK.
The only one of these with any real evidence is that Geriatric Pregnancy is a known risk factor for autism. Everything else is nonsense.
Don't feed into the rampant misinformation and malicious refusal to learn what is already known by throwing out baseless guesses and letting them carry any weight. How often has one of your customers correctly guessed what caused a bug without understanding, access, and rigor? You are doing the same.
> In the 1970s it was still easy to just abandon the school system. Kids who didn't obviously thrive were usually treated as family burdens, and still mostly removed from society.
> They also usually died young.
> People with ADHD for example, are more prone to abusing drugs and alcohol. How many people died from alcoholism who were untreated ADHD cases?
Or suicide. Look at the suicide rate amongst those with autism even now. And when people take themselves out of society with drugs or alcohol we don't put much into figuring out why they chose that path. I recall a bit in a book by an ER doctor--one of the frequent fliers, brought in because they were found unconscious. When asked if he knew what brought him to the ER, responded alcohol. And one time he admitted why: he had been a sniper in the Serbian war and it was the only way he could keep from killing himself.
I believe that to a large degree the "drug" problem is a manifestation of other issues.
> This is objectively true, do you know why? We changed the name of really poorly functioning people in some cases from "Mentally retarded" to "Autistic".
> That's it.
> Look at a graph of generic "mental retardation" diagnosis and it's fall coincides with the "rise" of autism diagnosis. Those people were always actually autistic,
Exactly. There is no epidemic of autism, there is an "epidemic" of better diagnoses.
It could be, but the Wikipedia article notes that she may have also suffered a birth injury from hypoxia.
Rosemary's story is so tragic and heartbreaking. Her life was filled with what would today be considered multiple instances of medical malpractice, and heartless, unethical behavior on the part of the Kennedy family. Her father didn't even tell her mother about the lobotomy until after it was done.
Incredible that she lived to the age of 86. The nuns taking care of her might have actually cared, which could hardly be said of the Kennedy family.
Those are not unrelated. Both from my family and from looking at the research, there's a strong correlation between long/difficult births (sometimes explicitly hypoxia) and autism.
Not that long ago (in the last decade) I spoke to a researcher working to identify autism in the womb. Seems odd thing to chase if it’s caused by birth difficulties.
Would you mind pointing me at the research you found? I've been looking for studies that correlated hypoxia and autism (and related interventions that might help) but I haven't been successful.
JFK was great in some ways, but that political dynasty had serious problems even before RFK Jr.
The Wikipedia article paints this as partly driven by the political aspirations of the patriarch. I suspect this is yet another example of we'd be in much better shape if the US didn't have quasi-royalty, nor families aspiring to that.
The only reason JFK was JFK is because his older brother was killed in an aircraft mishap in WWII. Joe Kennedy, Jr. would have gotten the big political push if he'd lived.
I got my diagnosis shortly after the DSM-5 release but my psychologist also gave me the DSM-IV Asperger's diagnosis at my request. I tell people I'm an Aspie, and that it is considered to be on the autism spectrum. I prefer the Aspie label because it is more specific. My interpretation was that the DSM-5 grouped it under autism spectrum distorders. I've never met a psychologist or psychiatrist that considered the autism spectrum to be a single condition.
One thing that interests me is the overlap between ADHD and ASD. My family seems to have a mix of different strengths of both. Some overlap of problems, e.g. executive function, emotional regulation, hyperfocus on topics of interest, suggests to me there needs to be a re-assessment of both conditions.
The overlap also makes it difficult to diagnose ADHD when both are present.
The co-diagnosis of autism and ADHD became possible with the DSM-5 in 2013. According to the scientific literature, 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD).
To compare: Three profiles of people with diagnosed Autism.
Blindboy Boatclub: An Irish satirist who wears a plastic bag on his head in public appearances. Formerly of a band called The Rubberbandits. Today he is known for his podcast and has authored three books of short stories. He comes across as eccentric, but he's quite capable of managing in society otherwise.
Side note, one of the other members of The Rubberbandits went by the moniker of Mr Chrome, but is better known to people as Bobby Fingers today.
My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
Wife's student: My wife is a special education teacher and she has a student who is completely non-verbal. However, he is noticeably intelligent and can form complex thoughts and can attempt to express them. Managed to use his visual communication device to insult one of his teachers based on her appearance. He will likely have issues for his entire life and will likely need constant therapy.
Now, what one thing can we do for these three very different autistic people?
There's a reason people say "When you've met one person with autism, you've met one person with autism". While there are some commonalities and typical comorbidities, what we regard as autism presents in so many different ways, it's incredibly difficult to construct a single program to address it.
And I can see why we'd want to break it up. But that gets difficult as well. My stepson started low-verbal. Didn't speak for a while. Spoke rarely for a while longer. And now he speaks a lot. And he's learning when it is appropriate to speak and to handle people speaking around him but not to him. So he was non-verbal. But then became verbal. But not all autistic children cross that border.
> My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
As someone with some similar issues, a) my motor skills are fine, b) the focus on tieing shoes is so frustrating; velcro shoes are everywhere, you can even get Dr. Martens high boots with zippers so you don't have to tie them... like sure, try laces and if it works great... but just provide the accommodation and move on. :P
On the plus side, everyone said playing video games would help my fine motor skills, so I got an out to play a lot of video games, which I enjoyed. :D And my atrocious penmanship hasn't been an issue in adult life, because nobody writes anything anymore (and have you seen the penmanship for kids that were in 2-4th grade during covid ... it's worse than mine!)
Reacting to the headline, I understand the basic concept of medicine is you treat a patient who presents with a condition, not a condition in isolation like some kind of abstract math problem. I think it's a mistake when doctors say to each other, even as a shorthand, I have a gallbladder to deal with, when it's a real person, and the best results come from considering the whole person when pondering how to care for them and which treatments to administer, with the medicine being only a part.
It is perfectly reasonable for the doctor to have "a gallbladder" to deal with--there are few failure modes and a standardized response to them. In specialized fields you will find professionals describe situations in terms of a baseline and any deviations from said baseline--just about completely unintelligible to anyone who doesn't know those baselines. To describe a patient as "a gallbladder" is saying it's a standard presentation of the problem. And doctors are not supposed to identify patients if not necessary.
You are speaking commendably from the point of view of diagnostics but from the point of view of physical operation you absolutely need that specialisation.
Ironically very accurate for an en vogue theory of how autism occurs.
Babies are born with many more neural connections than most adults have. The learning process appears to include a "winnowing" process. OTOH, autistic individuals appear to have a larger number of neural connections, which suggests that they did in fact "not converge" (or not weed out excessive connections that distract from more productive decision-making).
If anyone must be branded atypical (not saying anyone should but am willing to pushback on those who do) and in need of special attention it should be the historical story-mode dependent who cannot move on from childhood allegory.
I will admit that I stopped reading the article because I think the article is completely mixing things up and honestly just did not feel like reading anymore of it.
I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
This isn't a post diagnoses understanding either, it is well understood by anyone I have talked to about this in the last 10ish years? (maybe less, I cant really pinpoint that).
While I feel like there is value for professionals to be more specific about it, from an everyday person prospective I feel like "Autism" is well enough understood to be not just a single thing. Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
The real problem is anti-science people joining the conversation, but splitting up Autism is not going to change that.
Edit: To be very clear here I am not trying to say that most people in general are saying "I am somewhere on the spectrum". I am saying that most people I know which a larger portion of the people I regularly talk to are also diagnosed.
It's not a one dimensional spectrum with just severity as variable. It's a multi dimensional spectrum, you could potentially assign a "condition" to each dimension (hypersensitivity, OCD, rigid thinking, non-verbality, ...)
But virtually everyone in the field does believe there are many different mechanisms behind autism, some of which have little-to-no overlap either in the mechanisms themselves or necessarily even in the presentation.
Many scientists believe that one day we will likely be able to split off at least some of the undifferentiated mass of ASD into potentially completely unrelated disorders that may share a lot of aspects of presentation.
For example, we may find out that one set of genes combined with cytokine storms in utero cause dysfunction in synaptic pruning, while another set of genes combined with gut dysbiosis may affect brain plasticity in the critical period of early childhood. Those would be two completely unrelated conditions, with overlapping symptoms for some (but not all) who have them.
The reason we say "somewhere on the spectrum" is there are a lot of high functioning people who have a few autism like symptoms that benefit from some autism treatments. You can change the name/diagnosis what you want, but in the end we need to get people the treatment they need.
That's the benefit of a broad diagnosis. Narrow diagnoses make it hard to get specific treatments for problems.
That's my main concern about trying to split up autism. It's all well and good for study purposes, but for "can I get my insurance to pay for my kid's occupational therapy" purposes I'm really skittish about such a breakup. All the sudden my kid might have "omegaism" or whatever and boom, it's uncommon for them to need OT so insurance won't cover it.
That's exactly my issue with "autism" because it feels like lumping a bunch of things together just for the sake of simplifying health care. Meanwhile you have a bunch of people that have completely different symptoms, experiences and causes with the same diagnostic.
The vast amount of treatment for autism is therapies.
It really doesn't matter if the underlying cause is very different in terms of treatment because a speech therapist works the same with a kid with autism as they do with a kid with down syndrome.
If there were more pharmaceutical interventions then I might care a bit more. But there's just not.
In terms of the research, the researchers already have tools to sort and filter individuals based on their specific set of symptoms. Just because 2 people share an autism diagnosis doesn't really impact the research.
What objection do you have other than not liking that it's not a "pure" diagnosis?
It's lumping a bunch of things together because they are empirically linked together
People with sensory issues often also have more cognitive rigidity for example.
Autism, and many other psychological disorders, are quite literally just a lump of symptoms and presentations, because we do not have better options.
Sure, it makes navigating american health insurance easier if you can just say "Autism" and get various treatments paid for, but very similar diagnostic criteria and definitions are used in countries with fully socialized medicine.
Those people with those linked issues tend to benefit from similar treatment, and that's the entire point of a diagnostic criteria.
All the complaints come from people who seem to just not like the vibe of that?
Deal with it. Go fund more research into the heritability of neurodivergent pathologies if you want a blood test.
Some day we WILL be able to separate "Autism" into very specific diseases with specific causes, and some of those causes will have a genetic test. Unless we kill the concept of medical research because we elected morons who tear apart our institutions.
I have "Impaired vision", and I share that with people who are profoundly (but not totally) blind, and it does not matter that I can drive with glasses and they can't, and the name of that condition is not the important part.
All this handwringing about "but but but my mildly autistic son is mostly functional and I'm sad that he has the same name of condition as someone who cannot be educated past a 3rd grade level" is stupid. It does not benefit anyone struggling with autism to complain about it.
Are you aware that we have multiple medical conditions called "Palsy"s, and that they have drastically different causes and effects, such that my sister's Palsy which was caused by medical malpractice and prevented her from using her dominant hand in some cases is very different from my schoolmate's Palsy which left her wheelchair bound and requiring professional help day to day? They are both palsy because they are (partially) movement disorders stemming from nerve damage or dysfunction.
I honestly can't help but feel like the main point of people whinging at autism being a broad diagnosis is because they don't like that it makes getting treatment easy (especially coming from "the economist").
Maybe I'm not being charitable. But that really does feel like the only real outcome of trying to piecemeal the diagnosis.
I don't believe research or treatment is negatively impacted in anyway by the diagnosis being broad. If anything, that opens doors so that research isn't accidentally too narrowly focused.
The problem with broad definitions is that it causes false negatives in potential treatments. If you have a treatment that's effective on 10% of your group and useless on the rest you need a sample ten times as large to find an effect.
Or, consider TPA. It is an extremely dangerous drug (used correctly it still has greater than a 1% chance of killing the patient), if you administer it to "stroke" patients you almost certainly do more harm than good. The reality is that if you use it on a bleed type stroke it can (and likely will) only make things worse. Use it on a clot type stroke and you might save them. We of course know this and only use it when a CAT has confirmed it's a clot--but what would happen if we didn't distinguish the two cases?
> The vast amount of treatment for autism is therapies.
> It really doesn't matter if the underlying cause is very different in terms of treatment because a speech therapist works the same with a kid with autism as they do with a kid with down syndrome.
> If there were more pharmaceutical interventions then I might care a bit more. But there's just not.
There are a limited set of drugs involved in autism therapies, but they are general drugs that would be applied regardless the diagnosis (for example, antidepressants.)
In fact, it's much like depression in that sense in that it's a very broad definition with a number of causes. Some antidepressants even work better or worse for people.
I can't help but notice people want to define 'real autism' as only those who are impaired to the extent that they can't advocate for themselves, which conveniently means never having to listen to an autistic person's opinion on things. If you're communicating clearly, even through text on the internet, then you're just a quirky adult who is talking over the people with 'real problems'.
I'm rather dismayed by the recent outpouring of articles about splitting the diagnosis up by people who don't even have a horse in this race but have somehow become qualified to weigh in on psychiatric diagnosis.
Yes, but the whole point of diagnosis is we have treatments for those things that usually [sometimes] work and so we need to diagnosis people because that is the first step in getting them treatment.
My point is, if it is commonplace to refer to Autism as a spectrum we are already acknowledging that it is not a single thing.
Which seems to be the entire basis of this article while also mixing in the rambling of someone anti-science that frankly won't change even if it was split up.
I don't know enough above the subject (and what I could make of the article isn't helpful) to know if I agree or not. We should split Autism if we can conclusively separate people into the different diagnoses and then give them the correct treatment (which would be wrong for the other). However if we still give the same treatments in the end there isn't any point even if we can find different symptoms to result in a different diagnosis.
As science learns more (or I learn more) I reserve the right to change my position.
If a person can take care of himself, hold a job, and generally not burden anyone else why does he need treatment? To try to make him into whatever we consider "more normal?" Just let him be who he is.
The entire point of diagnosis is because a person needs help.
The point of treatment isn't to "fix" or "make normal" someone. It's to give them the tools needed to participate.
For example, someone with autism might be more prone to having a meltdown. What therapy does is give them the tools to both identify that they are on the verge of such a meltdown and to de-escalate themselves.
The point of treatment is to help someone take care of themselves, hold a job, and generally not burden anyone. It's also to help a person feel better about themselves.
Look at the percent of those with autism who never marry. You think that's because they don't want to?!
Look at the percent of those with autism that commit suicide. (And how many slow suicides of drugs or alcohol?? I don't think we even have a ballpark for this.)
It's not just whether they can take care of themselves.
Because deficits in social functioning often lead to the person experiencing emotional suffering and difficulty in friendship, career and relationships, often causing them to develop other conditions like depression and anxiety. This can be true even if the person is holding down a job.
It's a personal decision. I haven't gotten a diagnosis because I've been able to hold a job for many years, and I'm married, so I'm mostly fine. But I have spent my life avoiding most human contact, precisely because I know I'm incompatible with them, and people often want to know why I never leave the house.
I don't think there is any treatment. I think it's just a set of skills that you learn in case you want to try to pursue activities that most neurotypicals take for granted. It seems like a lot of work to me, and maybe it would be easier to just let things be, as you're saying.
I know what my limitations are and I can observe others doing the things that I can't do, including my own wife, and I imagine what life would be like if I could do those things too. But it mainly boils down to having FOMO, and thinking about how much work you want to go through in order to be able to do some of the things that you're having FOMO about.
The diagnostic criteria would exclude someone from an autism diagnosis unless they had persistent deficits across time and context.
Your example person may function well within a narrow band of capability - the purpose of treatment/support is to expand that band and help maintain it. I'm not advocating forcing support on someone that doesn't want it, but I am for improving someones quality of life by expanding their choice of occupation and social environment.
Without any external support I would wake up, work, sleep, repeat. Eating? Cleaning? annoyances that just interrupt work.
I've made a lot of money doing that but it's unfulfilling and at times, disgusting.
If you want to live in a society that leaves me be - I won't starve to death but I'm never going to have a partner or a family without external services like psychology, occupational therapy, social events.
Whether I pay for these services or someone else does it doesn't matter. I want them to be available for people like me to understand that we are not alone, there's a reason we can only exist comfortably in our narrow slice of the world, and if we want to leave our bubble there is support available.
> To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
I'm not entirely sure why this comment is apparently so controversial, but I think people are confused by this. My reading of it was that you meant "most autistic people you know", and you yourself are. Maybe I'm wrong?
That is exactly what I meant to say which is why I added an edit. I for sure could have phrased that a lot better.
Now yes there are people who are undiagnosed for whatever reason (including some people I know that don't see the point after being diagnosed with ADHD, I know personally I had to have this conversation with my psychologist to determine if there was a point to actually do it at that point) that use that phrase and it gets a bit tricky.
But nowhere am I trying to imply that *everyone* is saying this.
> I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
Couldn't disagree more. The "autism is my super power" movement is borderline offensive to people dealing with severe or low functioning autism.
I have never in my life used "autism is my super power" so please don't put words in my mouth. I will agree that it is offensive but that is very different from saying "somewhere on the spectrum" when I don't feel like having a more in dept conversation.
And again my point is that contrary to what the article seems to be trying to make, no one really considers Autism a single thing.
I'm not putting words in your mouth. What I'm saying is, if we had different names for different types of autism, saying "autism is my super power" wouldn't be such an issue.
And if "no one considers autism a single thing" THEN WHAT IS EACH THING? lol
> And if "no one considers autism a single thing" THEN WHAT IS EACH THING? lol
We don't have a name for every color on the light spectrum, nor can the average person tell you what's different about #FF0000 vs #FE0000. They still exist!
You obviously did not claim autism as a superpower.
Still this “everyone is a bit autistic” stuff is kind of absurd. It diminishes the condition.
> most people that I know, including myself, say that we are "somewhere on the spectrum"
No one says “everyone I know is a bit paraplegic”, because that would be insane. Yet people glibly call themselves autistic as if having geeky hobbies or a job in software is the same as being diagnosable as having an autism spectrum disorder.
> Still this “everyone is a bit autistic” stuff is kind of absurd. It diminishes the condition.
Again nowhere am I saying that.
Maybe I could have worded it much better but I never meant to imply, it happens that like myself a larger portion of the people I hang out with are diagnosed which for me works with just saying "most people" but I can see why that was not clear.
> Couldn't disagree more. The "autism is my super power" movement is borderline offensive to people dealing with severe or low functioning autism.
I doubt those types are saying much of anything. Its more likely their caregivers.
Again the old name for those of us who think its more a super power used to be called Aspergers syndrome. https://en.wikipedia.org/wiki/Asperger_syndrome . And we got folded in to Autism Spectrum Disorder, as did a whole host of other diagnostics.
And we have been found to be more truthful, better at focusing, can hyperfocus, notice more details than NT's, and plenty more. We're only a disease cause we're the minority.
As someone with a diagnosis, I would add several sensory issues (for me it's noises, multiple conversations at the same time, stickiness, physical contact, whole categories of food and several others) and several social issues to your list of superpowers.
Seeing it purely as a positive is insultingly reductive.
To be clear: I would not take a cure if it somehow got invented, but it /is/ limiting in a multitude of ways even in the best cases.
I only have so many comments before idiotic rate limiting. But I'll comment here.
So for dis-ease or dis-ability, it doesnt interfere with ease of life. Nor does it materially affect my ability.
> I would add several sensory issues (for me it's noises, multiple conversations at the same time, stickiness, physical contact, whole categories of food and several others) and several social issues to your list of superpowers.
And too true. I have some as you listed as well. However, I also figured out what causes them in me, and how to reduce their effects to nil. In a way, its self-treatment with n=1.
Noise: I dont have a problem with noise per se. However, when multiple people are talking or music with lyrics are on in the background, its incredibly hard for me to process what's spoken along with it.
Weirdly though, when I was principal clarinettist in a symphony, I could easily pick out any instrument by simple concentration. All I know is the noise issue with me is something with vocal processing of over-talking voices.
stickiness: for me, its dirt on my hands. Or chicken/turkey/beef/pork/lamb/goat blood. I do a lot of cooking. I hate those feelings on my skin. But I find that as long as I wash my hands before and after with a good degreasing soap (Dawn), the icky goes away. I can still do the task at speed.
I dont have the physical contact issues for people I'm close with. So, thats not an issue.
Food: theres only a few foods I can't eat, due to vomiting reasons. Tapioca based products are the big one. Aside from that, I eat everything from blue cheese, to cow tongue, offal from beef and birds,ghost peppers, pork brains, hakarl. I like the tastes and sensations that foods have. In a way, I'm wondering if this is also relayed to the supersensitive reject-foods type. Definitely not a disability.
And of course, theres the huge downsides with interpersonal interactions. Took me decades to really piece together and emulate and identify emotional state in others. But the psychologists dont know how to fix this either. Most of them are NTs who it comes naturally. But they want their indefinite sessions to do basically nothing but pay $200/hr.
> Seeing it purely as a positive is insultingly reductive.
Again, there are up and downsides to NT's and ND's.
Neurotypicals are more known for deception and lying. Or they use the term "little white lies". These things slowly stack up in NT conversations until they become huge problems. Sitcoms are based on this. But ND's, well, we are the weird ones. When someone asks "do I look good in this?" And you say "no, it clashes with your skin tone" - you were supposed to know they wanted a yes.
I feel sad that NTs can't properly hyperfocus, and can easily drop out of hyperfocus with low sensory input.
NTs memory is foggy and badly reorders things. Or they misremember and blame others for ill-perceived issues.
There are good and bad. I'm glad I'm ND, likely Aspergers (hence autistic). Most of these problems are ones that can be solved, at least for Aspergers side of things.
> I doubt those types are saying much of anything. Its more likely their caregivers.
It doesn't really matter whose saying it. The point is that autism is not cool or fun for many people. We need a way to distinguish the difference, besides saying high or low functioning.
> We're only a disease cause we're the minority.
WHICH WE ARE WE TALKING ABOUT THEN? IS IT NOT A DISEASE WHEN SOMEONE IS NON-VERBAL? Holy shit. Point, meet case.
I immediately started with 'Aspergers was folded into autism spectrum disorder'.
I dont think they ever should have did that.
If the doctors say that "someone is nonverbal, pisses their pants, and needs spoonfed at 17yr old" is somehow the same as "someone who is a professional engineer who can hyperfocus but misses social cues and says weird stuff" - the doctors are completely wrong.
Those are demonstrably NOT the same thing.
And yes, my Aspergers is a super power. Those abilities (many positive, some negative) have gotten me far.
The diagnostic criteria for "Aspergers" never required above average, or even average intelligence.
If you had visited the Aspergers and autism website support forum "wrong planet" 20 years ago you'd have seen many lower functioning than you people with "aspergers" complaining about aspects of their lives.
>And we have been found to be more truthful, better at focusing, can hyperfocus, notice more details than NT's, and plenty more. We're only a disease cause we're the minority.
Yeah and this is why Autism shouldn't be treated as a single condition, even if the cause is the same the outcome is meaningfully different than someone who cannot function.
I disagree completely, the discourse around RFK and "anti-science people" makes it extraordinarily clear that when most people hear "Autism Spectrum Disorder" they think exclusively of common, mild cases where the person has no serious issues existing in society and frequently benefits from their "disorder". They consider discussion of "curing" autism insulting, and challenge the idea that it's a read detriment at all. They do not for a moment think about the more severe cases that require people to have full time caretakers because they are unable to feed themselves.
I can't read the article because of the paywall, but I assume that it is referring the fact that these two extremes need to be treated completely differently and even discussing ASD is made remarkably difficult because these extremes are the same diagnosis.
> common, mild cases where the person has no serious issues existing in society and frequently benefits from their "disorder"
This is not at all a thing. People with some mild neurodivergence sometimes being good at very specific tasks is not even in the same ballpark as "Benefits"
There's no benefit to a brain that struggles in modern society.
>but I assume that it is referring the fact that these two extremes need to be treated completely differently
Except they don't. What is different is the intensity of the treatment. My girlfriend needs patience and a little therapy. Her sister needs intense forever therapy and infinite patience and a system that will allow her to live despite never being able to be a productive member of society.
>They do not for a moment think about the more severe cases that require people to have full time caretakers because they are unable to feed themselves.
They are regularly the parents of exactly those people and are sick and tired of you speaking for them and making their life harder. Those people who need fulltime caretakers can only pay for them through social security benefits, and guess who is trying to change that?
>even discussing ASD is made remarkably difficult because these extremes are the same diagnosis.
The reams of neurodivergent people I have interacted with in my life have never found issues with this, and have regularly been very willing to engage with the nuance of a poorly understood disorder which by definition has no single cause and might be several similar looking diseases because that's what the word disorder means in medical science
The discourse around RFK is that morons with no experience, training, or even ability to read introductory material apparently should shut the fuck up, and let the adults work.
> There's no benefit to a brain that struggles in modern society.
Would you say there’s no benefit to the genes associated with sickle cell anemia? How about homosexuality? Schizophrenia?
The reality is that we cannot reliably predict how genes interact with the environment in the long term. Modern society is more malleable than ever.
The fact that this topic is relevant on a site disproportionately frequented by computing professionals suggests a strictly negative characterization is incomplete even in today’s society.
> Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
In the 1990s we drugged kids (especially young boys) who weren't able to sit still with ADHD medication. Every parent's kid suddenly had ADHD, people would talk about their quirky behavior as "oh its my ADHD".
This generation it's autism, and it's likely over-diagnosed just as much as ADHD. You do it in your own post, attributing a defined, binary, thing as "I am somewhere on the spectrum". If anything, your own post demonstrates the anti-scientific (pop-sci) instagramification of mental illness. You either have some quantity of illness or you don't. You can't just ascribe some quirky, possibly somewhat anti-social, behavior as being on the spectrum. Sadly, this is often used like ADHD self-diagnoses to gain sympathy or social leeway. Much to the disservice of people suffering from the condition.
It comes as no surprise that psychiatry, and medicine in general, is suffering from a massive reproducibility crisis. It's not anti-science to call into question the amount of bunk, p-hacked, corporate funded garbage coming out of even the highest tier of medical grade journals.
Agreed; in short: any monolithic system will have individuals with natural dispositions transverse to that order, those individuals provide resiliance and novelty but also risk driving decoherence and defection. Yay pluralism.
"You do it in your own post, attributing a defined, binary, thing as "I am somewhere on the spectrum"
"You either have some quantity of illness or you don't."
I'm not sure what kind of argument you are making for (or against?) "binary" symptoms. The DSM-5 clearly lays out the spectrum. There is a conglomerate of effects caused by autism, and where you are on "the spectrum" is determined by how many of the symptoms you have, and their severity.
There is nothing wrong with someone claiming "I'm on the spectrum" if you don't know how or what they were diagnosed with. That language is consistent with the DSM. Unless they admitted to self-diagnosing, it seems wrong to assume someone is lying about their own experience.
"You can't just ascribe some quirky, possibly somewhat anti-social, behavior as being on the spectrum"
Quriky, somewhat anti-social behaviour (in your words) essentially is one of the dialogistic criteria. But nobody would be diagnosed with autism for that alone. Just like how autistic folks usually avoid eye contact. That doesn't mean they ALL avoid eye contact, and it also doesn't mean anyone who avoids eye contact is autistic. It's a wholistic diagnosis. One would need to be experiencing SEVERAL of the symptoms to receive an autism diagnosis. IME, the majority on the spectrum are indeed level 1, and high functioning, even to the point others might question if they are really autistic.
If you take issue with people self-diagnosing, I don't think anyone would disagree. But your combativeness in just discussing the topic kind of looks similar to people who refuse to accept that autism is really a thing ("there were no autisms back in my day" kind of thing).
I both agree and disagree with the over-diagnosis claim. Yes, everyone is suddenly autistic, which lessens the meaning or impact of the term. Also, the DSM 5 reclassifies a good portion of human behavior under the umbrella of ASD, so this is in part driven by the diagnostic model itself. We continue to see rising rates of severe autism in children, which are likely attributable to this reclassification as well as better common understanding of the diagnostic criteria. Presumably, just as many adults either qualify now or would have qualified as children.
At the same time, there’s the neurodiversity movement that seeks to destigmatize and depathologize these diagnoses for both high functioning and more profoundly disabled individuals. Just because you don’t conform to the norm - and ASD is heavily defined in relation to deviation from an underspecified norm - does not make you “mentally ill.” So we have autism as an identity additional to a diagnosis, which I think can be really empowering for people, and also cause confusion and frustration for others. It’s a reclaiming of “disability” from the paternalistic and abusive medical and pseudoscientific practitioners that have been harming autistic people for decades.
I also wish you were not being downvoted. You express some common sentiments and I think your comment adds to the conversation.
There's a lot of stuff to unpack in such a discussion, but I only want to add that I see the prevalence of things like autism as a sort of "over correction" to practically all of history. Sure, some kids might relate to it and incorporate it as part of their personality, but 1) I don't think that's as widespread a problem as some people claim, 2) kids do this all the time with various things, and have done forever, and 3) I think that's a small price to pay for society learning about these things and destigmatizing them
> I also wish you were not being downvoted. You express some common sentiments and I think your comment adds to the conversation.
Common or reasonable sentiments or not, the whole "kids these days" overtone is tiring and annoying, and most people - online and in person - don't want to engage with that, because it does not imply a position of good faith.
> This never happened. We did not overprescribe Ritalin.
I think it is important to stress a difference between "over medicated", "over prescribed", and "over dosed" (often also called over medicated, something I have been guilty of).
An example being my partner, apparently when he was a kid and diagnosed with ADHD he was put on a very high (I am only relaying what I was told) dose that he hated being on. That has caused him now as an adult to be very cautious to go back on the medication.
Where as for myself I was not diagnosed until an adult, was able to actually advocate for myself and I started on the lowest dose possible for all of my medications (also treating Anxiety and Depression). While I do take several medications I would not consider myself over medicated because we have identified that at this point in time all of these medications are actually helpful, but I am very cautious of being on too high of a dose for each of these.
I do think there are likely people that were put on too high of a dose too quickly to expedite treatment, but being on the medication in the first place was not the issue. It doesn't mean that the diagnoses was wrong though.
I think your point could be better made with less vitriolic language, and I also think you get a few things wrong: a bunch of my peers were over-medicated to the point of being senseless during the late 80s and early 90s. These drugs were pushed on kids by many well meaning but exasperated parents whose children - mostly boys - could not sit still and behave in the way demanded of them by school and society. So it's a mixed bag with regard to the intent behind medication, and the effectiveness with which it was applied. Nowadays, if anything it's harder than ever to get amphetamines because of US drug scheduling policies and our patchwork, piecemeal healthcare system.
I just want to say, I wish I could give 100 upvotes, but I'll have to settle for one.
It's definitely the case that there is undue paranoia about stimulants.
One case you only briefly touch on, addiction. Let me elaborate. I have struggled with severe ADHD(largely untreated during childhood, mainting severity into adulthood as a result) for all my life. I've struggled with drug addiction for most of my adult life(mainly cannabis). The amount of hoops addicts are made to jump through to get access to amphetamines is insane. Generally the requirements in my country(Norway) are to deliver weekly clean drug tests for 3 months. In the case of heavy cannabis use, it takes up to 3 months from going cold turkey until tests are negative. So, a 6 month commitment before treatment can even begin. Now, the relationship between ADHD and cannabis is interesting. I know some ADHDers who swear by it as a treatment. These tend to be of the predominantly hyperactive/impulsive type.
For me, it can't really be called a treatment. It actively worsens my condition in terms of executive dysfunction. Although it does improve some of the aspects like hyperactivity and emotional lability and helps make things bearable.
By the time I'm a year into a binge, my life is such a mess that getting myself out of it without meds is completely hopeless. Here I'm talking my apartment being such a mess I'm generally expecting to be woken up by people in biohazard suits any day now, and wondering how the hell I haven't contracted some kinda crazy bacterial disease by now. Cleaning it up is weeks if not months of work even with meds. Without it's inherently impossible. And the cannabis at least numbs me to the horror of it all.
So for 6 months I have to abandon that small comfort and just exist in this hellish life until I can even begin to improve things. Try to imagine how hard that makes going cold turkey in the first place. Not to mention the fact that meds significantly help me manage the addiction in the first place. I've successfully made it through this 6 month purgatory 3 separate times in the last 13 years. I've made more failed attempts than I can count. Wasted most of my 20s hiding from the purgatory inside a bong. I often wonder ehat my life would've been like if the rules weren't so strict. There's no evidence supported medical justification for waiting any longer than about 4 weeks. Out of the bajillion or so failed attempts, I reckon maybe 3/4 made it that far. Go figure.
I'm currently, close to 2 years semi-sober(doing a new moderation based approach to my addiction, very successfully, smoking exactly once every 4 weeks. Bit unrelated to the stimulant thing, it's more about relapse avoidance. But it's worked wonders so far.) and doing better than ever, but I still have a long way to go. And I will fight anyone who sows FUD about amphetamine or methylphenidate. These are wonder drugs. If you want to freak out about psych meds, go read up on neuroleptics. Now there's something truly horrifying. But of course, that only happens to crazy people hidden away in mental wards, so no one cares about them. I've been to those mental wards and I have seen some shit I will never forget. People whose lives were destroyed, reduced to an unbearable living hell for the remainder, by a supposed "treatment". These people are treated like animals. Go talk about that. Shut the fuck up about stimulants and SSRIs already, jesus. And go touch some grass.
> It comes as no surprise that psychiatry, and medicine in general, is suffering from a massive reproducibility crisis.
Psychiatry still hasn't coped with the fact that it spent most of the 20th century taking Freud seriously. More recently, it still hasn't figured out a way to repudiate the Satanic Ritual Abuse panic in the 80s. The people who were involved are literally still working, and have moved on to Facilitated Communication in severe autism, Gender Identity, and are still pushing around the fraud of Multiple Personality Disorder. Literally the same people involved in all of them, and now their children. [edit: forgot about one of the most important, Recovered Memory Syndrome]
There's just no scientific method in most of psychology, it's simply guru-led systemic theories delivered mostly (but often entirely) by a single person who is licensing practitioners. What comes along with that is a complete inability for any of these theories to die. They just eventually become unpopular and unprofitable, and people jump onto the next thing.
The psychopharmacological revolution has complicated this even more, because now there are billions of dollars wrapped up in it. The only advantage to SSRIs and the new generation of knockoffs was that they didn't cause tardive dyskinesia, there was never any statistical evidence that they performed any better than the previous drugs. And in the case of the previous drugs, they weren't ever shown to have much of an effect other than quieting down patients. They were all based on the wackjob theory that people having epileptic seizures suddenly became sane, and were one of the ways of inducing a seizure-like state, along with freezing baths, saline injections, electrocution, etc. All of the pioneers were also enthusiastic lobotomists.
How can we say that these new tactics are medicine or science when the statistics on mental illness keep getting worse?
It's kind of weird how you downplay tardive dyskinesia, as if it was kind of a no big deal, whatever kind of thing. Would you accept having tardive dyskinesia induced by a drug?
Is that really your position?
Your other words seem fine, but that is a standout sentence!
Bad article title. It should be "Autism should be divided into more specific diagnoses, once we have reliable, evidence-based diagnostic criteria."
There's a reason Asperger Syndrome was abandoned as a separate condition and folded into ASD (in DSM-5) -- until then, anyone who wanted the diagnosis could get it, by displaying symptoms popularly associated with the condition. So we had clinical indicators, but no objective biological tests -- still true for most DSM-listed conditions. This led to widespread abuse and uncertainty.
The single label "autism" has many drawbacks, but one important advantage -- it reveals what we know in a scientific sense, which is next to nothing. Eventually neuroscience will change this and identify biological causes for many "mental" conditions. This will end diagnoses based on clinical interviews and replace them with objective biological tests.
I imagine this scene in a future neuroscience clinic:
Patient: "Let me tell you what I think is wrong with me."
Clinician: "Don't bother, we have objective biological tests now -- your narrative would only confuse the process. Remember psychology?"
But it is divided into more specific diagnoses with distinguishing diagnostic criteria, and we call them "profiles". They are related, and thus are placed under the umbrella of ASD, because the DSM-5 is a diagnostic manual and not a full taxonomy of developmental disabilities.
One such profile is pathological demand avoidance (PDA). Another is Asperger Syndrome, which has been reclassified as an ASD profile. They all exhibit the diagnostic criteria for ASD in one or more ways.
Also, I want to point out that calling ASD a "mental condition" doesn't have a scientific basis; it is classified as a developmental disability. These terms matter, whether or not you consider this to be some kind of abuse.
Disorder by definition means that we do not consider it to have a single cause or issue, and we acknowledge that we don't understand it well enough to give it a single name, cause, or objective diagnostic criteria.
When we know what causes something, or how to strictly and objectively identify it, then we usually call it a disease.
This is well understood by medical professionals, and a normal part of their job, and not confusing for the vast majority of people diagnosed with some disorder or other.
This article is utter trash. As per the usual for the economist
Thanks for that insight. I previously had only a vague notion of why disorder is used. One of the main reasons I don't want to have an official diagnosis is because the word disorder has such a negative connotation. I really don't want any disorders, so if I just ignore it, try not to think about it, maybe it will go away, and then I won't have a disorder.
This is an idiotic media talking point not actually reflected in the clinical evidence. Unifying autism diagnosis under the ASD label was not a mistake, for a lot of reasons.
The article does not mention Pathological Demand Avoidance as a form of autism. Everybody avoids chores they don't like, but people with PDA take it an extreme. For somebody to have PDA enough that it becomes a shade of autism the world exists only in the form of I want and I don't Want so much so that it limits the imagination and perceptions of the world.
For example somebody with PDA autism cannot interpret the nonverbal communications of other people because they have already made the immediate decision that they want to be liked by others, so therefore they are. They cannot try new foods because they may not like it if they do try, so therefore they don't like it already. They would rather suffer hours of punishment grounded in their room than accomplish a 2 minute chore, because they already know in advance they would prefer to not do the chore given a choice to not do it.
People with PDA autism often appear to be sociopaths and pathological liars. They are not either of those things, due only to a minor difference in motivation. Sociopaths don't care if somebody else gets hurt so long as they get what they want, while harm to others does impact somebody with PDA in a very normal way. Since they have no capacity for empathy and color every past observance to fit their world definition of saving face it takes a lot of time with a PDA person to see the distinctions between them and a sociopath.
I remember back in the 2000s - 2012ish it used to actually mean something, if someone had autism then they were actually disabled and it was obvious.
90% of the "conversation" around autism today is a bunch of handwavey bullshit. There's no incentive for people to be intellectually honest. It's now a moral hazard because so many people are "attached" to the label and get accommodations out of it. You can pay phony therapists online to just go straight to a diagnosis so you can get accommodations. There are financial and political incentives in diagnosing more people.
People can't have an honest conversation around it either because it's such a charged issue. We either get one side that wants to expand the scope of autism to infinity or the RFK vaccine bullshit
It looks like this article is talking about that exact preprint, but a quick skim didn't reveal any sort of link.
Ever since I first read it, I've been training myself to identify the subtypes. I don't have good names for them, nor do I know how they correspond to the names in the preprint, but I can usually tell them apart. I have indeed seen exactly four.
I would love for there to be more research into the intricacies of each subtype, because I feel that care and accommodation could get a lot more personalized and helpful if there were less of "anything goes / anything could happen" and more specialization to what's most likely to be effective for each particular subtype. As it is, a lot of care programs or individuals supporting them may be specialized to an unknown degree to particular subtypes and not really understand how to become less specialized or even specialize further.
On top of that, I greatly want to understand better the subtypes other than my own, not least because a couple of them I can find very difficult to communicate with because my knowledge and arguments are formatted differently than how they learn. I want to learn how to format my knowledge in a way that's easier for them to understand and more convincing for them.
I'm just very curious and interested and I really hope the idea of autistic subtypes takes off because it absolutely agrees with what I've seen in practice.
The Economist should not be treated as reliable source of information on medical issues.
[edit] To be more specific, this is a lazy take and is about as insightful as saying 'cancer should not be treated as a single condition' which for HN is about as meaningful as saying 'the CPU and the GPU may both contain chips, but they should not be programmed the same.'
It should not, but it is because the healthcare system is broken; the education system is broken; and the social system is broken.
So people who have problems get lumped together because these systems are all stripped for parts because of capitalism and religiousity.
It'd be great to have a functional science based medical care but that won't help the children stuck in a hellhole of anti science, antisocial and pathological liars.
What's going on with the brain of any particular person is a point in a very high dimension space. What doctors call conditions are regions in that space. The definition of those regions has something to do with understanding and helping the humans and their families, but also something to do with the doctors making money. In the US Healthcare system nothing can be paid for unless it is in service of treating a "condition". Slightly odd that an article in The Economist doesn't mention this.
Related: doctors will refuse to test you to see if what you're suffering from is a particular condition unless that condition actually has a known treatment.
> Just as the physician must often make painful incisions during the treatment of individuals, we must also make incisions in the national body, out of a sense of responsibility: we must make sure that those patients who would pass on their diseases to distant generations, to the detriment of the individual and of the Volk, are prevented from passing on their diseased hereditary material
I am an autist in a family filled with autists - some of whom I think you would CLEARLY recognize as autistic, but some of whom you'd have this "absolute nonsense" reaction to. I say that because that is the reaction I had myself, I was very skeptical of this whole thing until I came to learn a lot about it after my daughter was diagnosed.
I don't think it's mainstream science, but monotropism is a theory of attention which has been theorized as the central underlying feature of autism and you might be interested in looking it up. It makes a lot of sense to me. I think the more mainstream way of talking about it is bottom up processing (details, the trees rather than the forest) vs top down processing (holistic, the forest rather than the trees).
Either way - you can get a very diverse set of results depending on how which sorts of things the individual's attention gets commandeered by, and by how much. Some people can't stop paying attention to individual sounds or individual tactile sensations or any other individual sensation, some people have difficulty putting sentences together despite having an excellent grasp of each word, some get stuck trying to process specific individual facial expressions and fail to grasp the actual social dynamics going on around them - it goes on and on.
Some have special interests (deep attention to a specific topic) that are extremely economically profitable (programming) or simply socially mainstream (music or movies) which give them social cachet. Some have special interests that mark them as weird and socially outcast (collecting bugs, memorizing bus routes). Some are very intelligent and are able to make up for a lot of difficulties with effort. Some have a great focus on social dynamics and come off quite charming. All of this can add up to very different experiences though life, very different sets of difficulties, and that of course can compound.
I think you should expect there to be a very wide variety of autistic people, if there is an underlying similarity in processing things. There is a very wide variety of non-autistic people, too. Heck, I think there's a wide variety of people with only one hand, just because Jim Abbott was a major league baseball pitcher doesn't mean he actually had two hands, and just because Muggsy Bogues was a great NBA player doesn't mean he wasn't short.
What's your thesis here? I'm getting "shy, slightly socially awkward and very intelligent is not what autism is," and "people who are intelligent, knowledgeable, socially tuned and socially integrated claiming to be autistic must obviously be lying, autistics could not possibly be those things."
There are social (cut me some slack, I'm autistic) and in socialized medicine systems, financial benefits to an autism diagnosis. So yeah, why wouldn't you claim to be autistic, what's the downside?
Add to that Gen-Z, socially awkward, isolated and poisoned by their obessive phone addictions frantically searching the internet "Why do I feel socially awkward?" and a million "Take out autism test!" links later get their answer. Yes indeed, they have autism, the test proved it.
Autism is much more than social awkwardness, and I'm sure you're not intending to be, but this post is extremely dehumanizing and insulting to people dealing with the issues that an ASD diagnosis typically presents with. and, by the way, many high functioning individuals have to fight for their entire lives to even get a diagnosis, so I'm not sure where you're getting your information from that these are being "handed out like candy" or whatever. I can point you to a variety of sources online if you're interested in learning what this actually is.
Unfortunate you have been downvoted because this is definitely the case. I am not actually sure that anyone disagrees with this, UK governments on both the left and right have identified this.
Ten years ago in the UK getting disability money for autism meant being non-verbal, requires extensive in-home care, unable to live independently, etc. Whatever you think about the definitions, it is very clearly not the same now and refers exclusively to some kind of social disorder. Rates of the former haven't changed significantly, rates of the latter are exploding.
When I say this, I don't think people understand the scale here: in some regions of the UK as much 40% of primary-school age children are disabled. Spending in this area is projected to bankrupt many local governments...to be clear, these are economic units with multi-billion pound budgets and responsibility for basic societal functions. It is difficult to understate the extent to which this is an issue.
I don't necessarily think people who engage in the over-diagnosis are ill-meaning: individuals are being given money to do this, psychologists are raking it in hand over fist, and the UK is now a place with a very effective disability lobby with lots of incentives to keep it all going. But it remains true despite all of this that it cannot continue.
Just imo, the damage done already is close to irretrievable. The situation in UK schools is dire: teachers are frequently attacked physically (in some regions in the UK, this is so frequent and so little support is provided because of the inability to exclude "disabled" children that there are frequent staff walkouts), typical classes have 5-6 ASD assistants at all times, behaviour is so poor that other children are unable to learn, parenting of these children is non-existent because parents gain financially and the incentives to blame a medical condition rather than poor parenting are clear, etc. If you consider other trends, it is dire...we are talking about most of the workforce entrants coming out: many unable to speak English, can't perform basic tasks without support, zero impulse control, usually claiming benefits straight out of secondary...it is so bleak.
I’ve been using “autism that I care about” because a large number of people I encounter are on the spectrum / neurodivergent (hobbies and work I suppose) that require very different interventions and accommodations that people with whatever you call significantly affected people with autism are called (eg, Rain Man, etc).
Not that people low on the spectrum aren’t important, they are, but that just using standard interaction tactics that I would with non-spectrum people works well enough.
So trying to save time that someone doesn’t need to interrupt the conversation to say they are on the spectrum and can only eat smooth foods or whatever.
It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person. That's called a partition, and its in an entirely separate thing.
When I tell this to people they understand immediately that I am in fact on that "spectrum".
Here are three separate metaphors:
1. A linear continuum (like wavelength for light) from "no autism" to "really bad autism".
2. A collection of disjoint sets (like individual named colors like "cyan" and "puce") for cases like "really into trains autism", "freaks out at parties autism", "non-verbal autism", etc.
3. A continuous mixture of different properties (like rgb(.1, .2, .05)) for symptoms like "10% social dysfunction", "20% repetitive behavior", "5% sensory overstimulation".
When people describe autism as a spectrum disorder, they generally mean the third metaphor. It's a mixture of different symptoms and different autistic people have different amounts of those symptoms but all people diagnosed with autism have a significant amount of them and their symptoms will have some amount of overlap with other autistic people.
Number (3) has better explanatory powers than (1).
However, for the purpose of assessing social and family impact, it is rendered to (1). Both schools and state (US) programs use (1) to assess if a child qualifies for support. This is not always related to how to parent or educate the child.
Fortunately, the US school system with IEP (individualized educational plans) are developed along (3). (Source: two of my kids have ASD)
None of that necessarily helps in informal social contexts or in professional workplace settings. I think the American Disabilities Act covers reasonable accommodations for people with autism spectrum disorders, though I am not sure if it requires legal disabled status.
Lastly: I met a Native (Navajo) family with a child that seems to me, have some developmental disabilities — but I think they take a very different approach. For one, they don’t seem to have the usual social stigma associated with this, and are baffled why I would suggest getting state support for early childhood intervention. If anything, I would not be surprised if they thought I was, yet again, someone unthinkingly pushing a colonialist worldview.
> Number (3) has better explanatory powers than (1). However, for the purpose of assessing social and family impact, it is rendered to (1).
My first thought was is (1) more of a projection of (3) from multiple dimensions to one, or more like the magnitude.
Also, it is known thing or are "trains" a euphemism now like "friend of Dorothy"?
It's the punchline to a meme. This is one example: https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRgeiEh...
I don't think it's quite the same as calling yourself or someone else a "friend of Dorothy". People who say they are into trains usually precisely mean they are into trains.
Speaking literally is also a symptom of autism so I think it ends up full circle by accident haha
Within the community it's a bit of an in-joke. It's not a coded message or anything, just an acknowledgement that autistic people are disproportionately into trains.
But they're just so cool! How is everyone not into trains this much?
I know, right? I’ve been near a train.
Once you go Tram you never go Train: https://www.youtube.com/watch?v=wffDBsSgS5Q
Strictly my anecdotal observation but, as someone who attends train shows regularly, they definitely, absolutely are.
Not an ounce of complaint to be clear. Honestly seeing them flip out and flap around and giggle excitedly is delightful. I'm glad they're having a good time and I'm also glad that all of these experiences have not involved some self-involved asshole leering, criticizing or yelling at them for being happy.
> Also, it is known thing or are "trains" a euphemism now like "friend of Dorothy"?
I meant it only as a reference that one of the common characteristic symptoms of autism is a deep focus on some topic of special interest. In boys with autism, trains, cars, or other machines are a common one.
While that word does get used to refer to people sometimes, it's afaik always hostile (slur rather than euphemism).
(1), (2) and (3) aren't mutually exclusive either. It can be disjoint sets and a spectrum, which is modelled by (3), and (1) is a special case of (3) where the other axes are fixed to a constant. But you're right that (3) is the most powerful.
I like this answer, it’s concise and comprehensible, and among these options, (3) exceeds all others. I’d argue (4), (5), (6) and so on are even better, if not all always readily available.
At this point, I can't tell if this thread is straight-faced or meta.
>When people describe autism as a spectrum disorder, they generally mean the third metaphor.
Yes, but that's not what a spectrum technically is.
It's also not a very good idea descriptively, all the various properties people pile into this "spectrum" don't have nowhere equal weight with respect to relative importance to warrant the equal weight they get in such 'diagrams'.
A small difference in quantity can become a radical difference in quality. (Look at what happens if you cool or heat water! Or the effect that small amounts of lag have on UX, it goes from interactive to not.)
i.e. #3 here can be approximated as #2, and this can be helpful.
But the really interesting thing is, with neuroplasticity and skill training, you can make tiny adjustments to #3 which produce a change in the set of #2, i.e. real differences in quality and enjoyment of life.
No. #2 is bad analogy and the way you are describing is misunderstanding of what ASD means as spectrum. It is not RGB, but more like list from tens of different diagnoses - probably ranging to 20 or 30 in number, so more than 4, that colors are offering and that also means more dimensions, but could include more, that some people manage to get as some kind of collection - some people have collected nearly 20 of those to illustrate the problem, that people diagnosed with ASD are similar but at the same time different in their own way. Another issue is because of ASD you do not get to collect other Autistic-related diagnoses, that would narrow your condition.
On top of that, if you have ASD diagnosis, you definitely have other issues that describe your condition more, especially mental issues. Also, some of them are going to change - some can go away, because environment changes or simply because your understanding of issues have changed. A lot of the struggles are because diagnosed people even after diagnoses do not understand what exactly they have to deal with.
The issue is how these conditions are diagnosed - there are some similarities with LGBTQ+ that initially was labeled as a disease. And there is cautious fluidity in labeling because of that as well, because ASD is not completely understood, as we are really in the very beginning on mapping both of our brain functions and DNA - what those genes are responsible for. Also, the number increase of ASD might have other factors involved in the way how we as modern people are using our brains by dealing with all that information that humans previously did not need to do and most probably ASD is species wide change that we are causing as our behaviour has changed, especially when our unwritten beaviour rules are breaking down. When we have to compare this to how species are described, humans alone would be consisting of different species - the only difference why we are not different species is because of mixing.
To take the rbg metaphor further, it should really be a "gamut" rather than a "spectrum".
"Spectrum" works too in that if you take white light and split it in a prism, it is spread out into its separate but overlapping components of light at different wavelengths.
Good luck finding magenta there. RGB is not modeling the monochromatic light spectrum.
Perhaps "big ball of mud"? "mess"? "cluster f*k"?
Arguing relevant metaphors in HN?! A new low...
If this is a new low, that's news to me.
The top comment chain on the front page 'Plane crashed after 3D-printed part collapsed' is nothing more than arguing about metaphors. This happens all the time in just about every story.
> 1. A linear continuum (like wavelength for light) from "no autism" to "really bad autism"
This is the least helpful metaphor, when applied to anything with more than one dimension. "Really bad autism" can describe a multitude of unique symptoms.and is nearly information free, similar to describing someone as having "A really serious illness"
For reasons I am compelled to comment that “really bad autism” is not a medical description.
Generally under "really bad autism" is not meant as part of the spectrum of conditions, but a very narrow behavioral problem that parents have to deal with. The difference between what makes autistic person a "really bad autism" also differs for various social situations, so let's not go there...
> a very narrow behavioral problem that parents have to deal with
Let's not define autism in relation to what other people have to deal with. For years, autism has been discussed not in terms of what the autistic person experiences but what the people around them experience. That's kind of BS. Someone else being autistic isn't about you, it's about them.
You're welcome to talk about people with "high support needs", or people who have certain struggles in social situations, but discussing "really bad autism" just reinforces that negative stigma that autistic people shouldn't be thought of as people but rather as problems that "normal" people have to deal with.
Well said. I had mischaracterized their usage. I also think they mean 3, but that's not a spectrum either, that's a vector space.
I don't think the 3rd metaphor fits. rgb values still points to a single color, which maps back to a single value on a 0 -> 1 or red -> violet continuum. It's more apt to describe it like a multi channel audio mixer. Many different channels ("really into a specific topic", "freaks out at parties"), each with their own value (10%, 20%).
Metaphors often fail though, so it might just be best to say what we mean plainly.
> rgb values still points to a single color, which maps back to a single value on a 0 -> 1 or red -> violet continuum.
No, it doesn't. Wavelength is unidimensional, but color can mix many wavelengths, and RGB is a 3d color system which doesn't cover all combinations of visible light but does approximate the way most human vision works, and is therefore useful as a description for human-perceived colors (and more accurate than picking a single point on the unidimensional wavelength spectrum for that purpose.)
An RGB value points to a single color, but if R is "really into trains" and B is "repetitive behavior" and G is "susceptibility to sensory overload", then it's basically the same metaphor as a multi channel audio mixer, except understandable to a different (and likely bigger) pool of people.
That line of reasoning doesn't follow as RGB implies there are exactly three measures, which isn't the case.
>RGB implies there are exactly three measures
It's a metaphor.
It helps people build an intuition. It doesn't need to be exact to do that.
It doesn't have to be exact, but it's counter productive when it is clearly and meaningfully incorrect though. That's the problem with the two dimensional [0,1] scale as well.
>so obviously incorrect though
I couldn't possibly disagree more.
That's just the limits of it being a metaphor. Audio mixers also only have a finite number of channels, but are also much less familiar to most people.
"spectrum" encompasses any hue, not just those 3, any wavelength of light can have a different amplitude
RGB doesn't map to a single line, you're thinking just about the hue. RGB is a proper vector that addresses a whole 3D color space.
Humans range across such spectrum that actually match all 3.
We range from being blind to having exceptional eyesight, so we are all on a continuum.
But there are various subsets, such as color or light sensitivity, far/nearsighted, better tracking of motion or text - and these have their own subsets, such as the ability to scan text quickly (or dyslexia), read a room better or see things that require training (such as the details a race driver immediately sees that you wouldn't). Someone with an issue of vision usually finds himself in a cross of these sets, borrowing tools form one to compensate for another
The same can be said for hearing, for height and weight, and for any other physical, psychological or mental property we have.
(I've always felt it odd that "spectrum" usually refers only to Autism.)
>(I've always felt it odd that "spectrum" usually refers only to Autism.)
It depends where the term is in use, when you get in to more medical like fields then people will use the ASD term to separate it from other spectrum disorders like OCD or different types of schizophrenia.
To be fair, I have a bit different impression from specialists, where ASD as spectrum overlapps with other conditions, like ADHD, OCD, BP and I have a bit of linguistical background to extend and call it spectrum spectrum... also, I'm too lazy for that.
yeah my thoughts on this is to present it as a kivat diagram which is multiple 2 dimensional axis arranged in a circle.
https://blog.onepatchdown.net/autism/2023/01/13/autism/
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing
Oh but they do. the "spectrum" is by how socially acceptable someone's autism is.
> how socially acceptable someone
I intuitively understand this but has it been clinically defined?
DSM-V [1] describes criteria / symptoms in two groups (caps from document, sorry):
> A. PERSISTENT DEFICITS IN SOCIAL COMMUNICATION AND SOCIAL INTERACTION ACROSS CONTEXTS, NOT ACCOUNTED FOR BY GENERAL DEVELOPMENTAL DELAYS
> B. RESTRICTED, REPETITIVE PATTERNS OF BEHAVIOR, INTERESTS, OR ACTIVITIES
For criteria A, severity is more or less measured by how much social impairment is observed --- that's a measure of social acceptability in some fashion.
For criteria B, the severity criteria is about "interference with functioning in contexts" as well as observed distress of the patient. Interference with functioning can be related to the patient resisting the desired function, but it can also be because the patient is socially excluded due to their behavior.
Although, I should point out clinical criteria in general and the DSM in specific are a formalization of arbitrary judgements that describe observable characteristics grouped into a diagnostic category; this can be useful, but it's not really an understanding of the underlying condition(s), it's a handbook of things to look for when a patient comes asking for help and what things to try to help them. If someone has the same underlying conditions but manages to pass as socially acceptable, they may not come in for help, and that's fine too. When multiple underlying conditions result in similar observable criteria, the DSM gets pretty confused; there's not much in the way of attaching traces and getting debug logs for mental processes though, especially out in the world, so this is the best society has, I guess.
[1] https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(...
"Society's acceptance of a person who has a condition", and "a condition that inhibits social interactions" are two entirely different things.
If I persistently ask awkward questions, that might "inhibit social interactions". If my community was tolerant and even accepting of this behavior it might not inhibit social interactions quite as much. They are different things for some behaviors but extremely closely related for others.
A specific behavior could qualify as both unaccepted by society and inhibiting social interactions. But that doesn’t mean that being unaccepted by society and having inhibited social interactions is the same measure.
It is not just about societal tolerance. It is also about autistic person having complete emotional meltdown with yelling abusive things or even hitting things because something was not exactly to his/her liking. You can "tolerate" that, but then you are just allowing someone else to be abused.
And even in milder cases, the "does not understand social rules" is sometimes or even frequently euphemism for what would be labeled as abusive or cruel or simply selfish behavior for non autistic person.
> It is also about autistic person having complete emotional meltdown ... because something was not exactly to his/her liking.
This usually happens when the person's needs have been repeatedly ignored, either because the person isn't aware of their needs, and thus isn't able to communicate them; or because the person has tried to communicate their needs but not been understood; or because the person has tried to communicate their needs and had their needs disregarded.
This isn't unique to people with neurodivergence.
> with yelling abusive things or even hitting things
Eventually communication fails and all that's left is violence. History (and the present day) is full of examples of this happening on an individual, national, and planetary scale.
> This usually happens when the person's needs have been repeatedly ignored, either because the person isn't aware of their needs, and thus isn't able to communicate them; or because the person has tried to communicate their needs but not been understood; or because the person has tried to communicate their needs and had their needs disregarded.
This is not true. Low emotional control is one of symptoms and for many autistic this is just a default response. It is literally part of diagnosis. There is no space for needs or rights of others. This is response to someone putting a cut into drawer wrong way or disobeying one of thousands weird rules the autistic person have for themselves and the world.
This frequently happens as a first response to the situation, before any communication could possibly occur.
> Eventually communication fails and all that's left is violence.
Autistic person being violent is violence as any other. And there was no attempt at communication, because man autistic dont understand why the thing needs to be communicated in the first place. They dont understand other dont see the word the same way.
And even more importantly, it is an emotional meltdown having nothing to do with what went on with communication before or not.
I suspect part of your parent comment's point is that this is an implicit bias in the way the spectrum is defined and thought of, so it wouldn't be clinically defined in those terms explicitly.
In other words, the "spectrum" doesn't exist to capture the variation in the autistic person's own experience - if it did, it would look very different. It's a remnant of a time when autism was seen as just a "problem" for the people around you, and the spectrum measures how much of a problem you are and how weird you are seen by their measure; which does map onto a continuous line in the same way.
That does capture something useful, but only a small part of what autism actually comprises, and is much less useful at capturing the autistic person's own experience of it, and makes it a less useful tool to them than people might assume.
It's not unusual for diagnostic criteria to hinge on the impact the thing is having on your work/family/school life.
Alcoholism, for example - we don't define alcoholism as drinking ≥2 bottles of wine a week, or say that 1 glass of wine a week is part of an alcoholism spectrum.
Instead, we ask whether drinking often interferes with taking care of home and family; or leads to job/school troubles; or has lead to getting arrested.
How much of a problem an alcoholic is for others being roughly equal to how much of a problem alcoholism is for the alcoholic.
> Instead, we ask whether drinking often interferes with taking care of home and family; or leads to job/school troubles; or has lead to getting arrested.
We don't ask just that, and the diagnosis doesn't hinge on those - in fact those account for only 3 (or 4 depending on how you count) of the 11 diagnostic criteria for alcohol use disorder. The others are about the person's own experience with alcohol, the difficulties and psychological problems caused by it to the person themself. And that's for alcohol use, an external behaviour-based problem with a specific narrow scope. Autism is a much wider construct with much more varied impact and experiences, and yet in practice people are placed somewhere on the spectrum based mainly on external interactions and troubles.
Historically this came about because people who were "low-functioning" caused more difficulties to others, whereas "high-functioning" folk didn't - even though they might have comparable amounts of difficulties and psychological anguish internally and in need of similar help too. This simplistic view is changing slowly within the field and with some therapists recognizing it better for what it is, but it's still not nearly as widely recognized as it needs to be.
> It's a remnant of a time when autism was seen as just a "problem" for the people around you
I think it still is the current approach, and is not a bad thing per se:
People can have their own specific conditions, but if they are considered fully functional they will have no business getting clinically diagnosed. It will only be relevant when it reduces social functions, and becomes a problem, so that's the part that will be diagnosed.
To put another way, there is the biological/research part to understand how people work and how they think and behave, and the medical part to "fix" things. The variation of people's experience belongs in the former, the autism spectrum belongs to the latter.
Of course we do this for most conditions: for instance people's voice are all different, if yours is just "weird" but intelligible you won't go get a diagnostic, if half of the people can't understand what you say you might need one, whatever the biological cause is.
As someone who has "successfully" masked for the majority of their adult life, all the while suffering in silence, I can say that this is a problematic take at best.
I am considered a "fully functional" adult from all outward appearances, even to friends and family. I'm lucky enough to be capable (with great internal effort) of typical "normal" things like participating in meaningless smalltalk, holding down a job, and doing all of life's chores just like "everyone else." However, unlike everyone else, I had to practice and endlessly rehearse things in my head to achieve the outcomes I desired. A charitable interpretation of your words would mean that "it's a problem", but who is it a problem for? The folks around me? Certainly not. This is invisible to others. It's akin to running monte carlo simulations of all permutations of outcomes before acting on decisions that others would consider trivial. For years I thought that was what everyone was doing. I eventually learned that "no one" did this, and I trained away all "problematic" characteristics of myself just to keep up the act.
So in lieu of your implications that 'passing' autistics "have no business getting diagnosed", I'd rather propose this instead: seek a diagnosis if your condition is debilitating in any way shape or form and would benefit from treatment, _regardless_ of whether or not your condition is externally visible or even apparent to others. A "fix" should be sought if you are suffering. There is no cure for autism, but there are many programs and medications that can help.
PS That said, it may be unwise to disclose your diagnosis to say your employer, unless you need specific accomodations for your set of symptoms at work. I speak from experience.
I didn't mean to imply masking doesn't come with a disadvantage, and I sympathize with the efforts needed in places where others have no stress.
Still IMHO the bar to treat it as a medical condition is higher than that. To take another example, one can be hyper reactive to dust, and that has surprisingly wide impacts on everyday life. House maintenance becomes critical of course and interior furniture will reflect that (e.g. a long fur carpet and other hard to clean convoluted forms are out of question). It also bars the person from whole categories of shops ans places, old libraries is often a no go, some shops/restaurants using encent or heavier room flagrance will also trigger a reaction. There will be whole categories of jobs that are also not an option.
This kind of predicament will make everyday life a lot tougher and require significant effort, yet IME will not be categorized as a medical condition until something critical happens. Like an asthma crisis that ends at ER for instance.
It is not "fair" in the sense that successfuly dealing with the health/mental issue is kinda taken for granted, but I also understand why we draw a line between conditions the person can deal with alone, and other conditions that require external intervention.
I could "deal with it", until I couldn't. When a seemingly fully functional person with no warning signs suddenly breaks down (often catastrophically), providers scramble and tend to misdiagnose since they're missing key criteria. Without a formal diagnosis, it can look like severe depression or psychosis or a number of other similar conditions that have very different treatment plans. Autistic burnout treatment is something entirely different, although it can present the same. A prior diagnosis would at least point them in the correct direction for treatment.
ASD is defined by the level of support the individual needs. It says nothing about “fitting in” or by pain or anything else like that
having friends is a level of support though
Has social acceptability in any context ever been defined, beyond say, rules of etiquette? It's a free market and everyone is arguably entitled to test to see what it will bear.
The entire nature of the field of psychology and mental health treatment is relative to pain and dysfunction.
If people fit in well and didn’t have issues (either internal pain/suffering or society interaction pain/suffering), they are not applicable to the field.
This is key and what makes something a disorder.
Everyone experiences some obsession or compulsion. But only some experience it to the degree of a disorder.
Just like everyone has some “autistic” tendencies. But it is only a disorder in some.
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person. That's called a partition, and its in an entirely separate thing.
Hmm, what are these 'colors' in your framing? I don't think anyone feels that ASD comprises totally distinct, 'disjoint' descriptions. It's true that there are multiple parameters along which one may vary, but that's true of any human syndromic disease, and probably true for any human disease, in general.
Here's a popular press article that talks about a very recent framing of autism that uses clinical and genetic data:
https://www.simonsfoundation.org/2025/07/09/new-study-reveal...
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person.
Wasn't Newton making the point that we normally perceive and treat colors as qualitatively different, but that they're in fact caused by a single underlying mechanism that can take on any of a continuous range of quantities?
Thus using the term "spectrum disorder" would be making precisely the same point, to describe a set of apparently qualitatively different disorders that are in fact caused by some underlying mechanism with a range of quantities? (To be clear, I don't know if any so-called spectrum disorders actually meet this criterion, and it's probably more complicated than that, but it seems to be the reason the term was chosen.)
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors"...
I get what you mean but I feel compelled to point out that colors are on a spectrum. A partition can be a quantized spectrum.
GP’s concern is that the quantisation scale is not representative of linear severity. It’s more like classification of disjoint characteristics tagged with colour
I won't offer an opinion of my own but I don't disagree with that take.
spectrum is a good word because of spectroscopy, where for example a single beam of light is broken down into constituent parts
in this ASD model, a single person is like a light source, ASD traits are like frequencies, and ASD itself is like the EM spectrum
this is useful because our best understanding of ASD today is multidimensional
as you say, it is not supposed to be used as like "the spectrum" is a line from "normal" to "autistic"
unfortunately most people aren't familiar with spectroscopy, but I think it's a good metaphor
do you have a suggestion for a better word than spectrum, that could convey the same rich metaphor but be less easily misunderstood?
That metaphor actually fits well with how it is interpreted in my head. Even the "visual" of a spectroscope's graph, just turned 90º in my mind.
Your metaphor explains it a lot more than the definiton of one single color among spectrum. like some are proposing.
Numerous people don’t realize this or that there’s not some simple consistent blood test to say “yep, he’s got autism.”
Moreover, people have no idea how difficult this makes it to properly test anything related to it because control groups are so difficult. It’s why any type of study that claims something does or does not, definitively “cause autism” is highly unlikely.
You can identify potential contributors, but that’s about as good as it gets.
People in absolutes about this stuff can’t be taken seriously.
What you are witnessing is the process of "mystification" where it requires an "expert" annointed by some organization to interpret arbitrary criteria to make a politically or economically important determination that can't really be challenged on any objective basis. Since you are not an "expert", you are not permitted to do your own research and therefore by rule are incapable of being able to access the special mystified knowledge that only the "expert" has access to.
That, or it keeps non-expert snake oil sales people from 'flat making shit up'.
If no outsider can't explain why the expert is right and the non-expert is wrong, besides saying they're not an expert, then it certainly has the appearance of being a mystical power of the expert. After all, mysticism requires only faith in the mystic prophet to be true.
Why are you "on the spectrum" for pointing out the correct use of the term?
As far as I can tell, everybody else is on some spectrum of "idiot".
There's a whole genre of viral social media posts that amount to lumping anyone who appears to have cared quite a bit about something that's not obviously exciting (to most other people) into the autism spectrum. Especially historical figures. "This guy made tons of detailed beetle drawings and cataloged them in books! See, there have always been autistic folks, because he definitely was!"
Like I mean maybe, but also he was a bored rich aristocrat before TV was invented, and sometimes there are no parties going on or everyone's hiding in their country estates because of a cholera outbreak or whatever, and "making shitloads of drawings and organizing them" was like 50% of scientific work at the time. So. Maybe he just had a lot of time to kill.
Going by randos posting online, "liking things" and "knowing stuff" and "caring about things" are all autistic traits when present in any but the tiniest of degrees. It's ridiculous.
It's getting a tad out of hand. A friend "jokes" that I'm on the spectrum fairly often any time I speak with any sort of passion on topics in interested in or care about.
I feel social media has conditioned people to think of you're anything other than bland and "normal" in your personality and have any degree of uniqueness about you then you're on the spectrum.
>then you're on the spectrum.
Sorties paradox. Everybody is on the spectrum, it's only called out when it's noticeable.
It was only after being corrected a few times for saying things like:
> well, were all on the spectrum, that's how spectra work: they're encompassing.
that I began to suspect that we weren't actually on the same page about spectra.
I generally try to avoid tossing disorders around as a way of describing personality, because I don't want to trivialize somebody's experience for whom that disorder is very troubling.
Actually, I'm allowed to be persnickety about language without it implying a diagnosis of any kind.
But I thought it was kind of funny to share it the way I did, so I made an exception.
This is the most delightfully autistic response to the article.
Perhaps this is just a different mental model thing, but in a spectrum each of those colors would be, maybe, a frequency of light or maybe even a range of frequencies measured at different intensities. Autism might be thought of as a band in the larger spectrum (think of the infrared or ultraviolet spectrums as subsets of the electromagnetic spectrum), and any one person might emit a different spectrum, like a combination of these different colors. An autistic person, specifically, would exhibit higher intensities in that named spectrum, and conversely the spectrum is identified as a part of the larger spectrum of human experience where people often show similar combinations of colors.
It's always going to be a metaphor, but that's the way that I best understand it.
Isn't a spectrum limited to a single dimension? If yes, that doesn't sound like Autism disorders (Asperger's, ADHD, verbal, non-verbal, violence, exacerbated sensitivity, social abilities...). They all suggest that there are multiple more or less independent/orthogonal. dimensions. And everyone scores differently on the combination of these dimensions. Which puts us on different coordinates in a vector space. Is this still a partition?
>Isn't a spectrum limited to a single dimension?
Typically no in the english language usage.
What about "constellation"?
1. We've seen them long before we could really investigate them.
2. We've already grouped them up based on seeing them in a similar direction.
3. ... But it might turn out they are actually very far away from one-another, or have important differences we weren't able to see before.
It definitely acknowledges our biases better than "spectrum", although I think they want varying degrees of each component, and we don't usually take a little of this star and a little more of that one.
I might've recommended "palette" if asked before spectrum got traction.
Or maybe we don't need a better word at all, maybe we should try grouping the characteristics differently such that they're no longer all together under the same heading. (I'm not qualified to say, just a hunch).
Isn't this a retcon? As I understand, autism was considered by many to be a spectrum in the literal sense, and the "colors" thing came later.
Fun fact: some spectra are discrete, not continuous! And some have both parts. Depends on the operator...
Autism researchers talks in terms of "graded membership" in "fuzzy clusters" within trait space.
> "...they mean..."
It's always some anonymous "they". Those bad people. You know; not reasonable folk like you and me. "Them".
I think the former is what they are trying to imply?
It seems a poor analogy, since it's impossible not to be on the spectrum somewhere, even if it's #000000.
This is a misconception I see pop up frequently online. In terms of the color spectrum, there are plenty of things—even things that have qualities in common with color—that aren't on the color spectrum. And while there are colors outside of what humans can see, we generally use it not to refer to the entire electromagnetic spectrum, but only to the subset that makes up light visible to human eyes.
Likewise, when we talk about the "autism spectrum," we're not including every exhibition of traits associated with autism. You can have some traits associated with autism without being "on the spectrum."
Also, perhaps as importantly, "spectrum" isn't a term that generally applies only to color, or even electromagnetism.
I would argue that for the average person, therefore, 'spectrum' is an unfortunate choice of analogy, since most people believe that it encompasses every possible color. One should not need specialist knowledge to discuss an issue of this kind in common terms.
The idea that the word "spectrum" doesn't automatically imply "color" is hardly specialist knowledge, though.
"There's a spectrum between..." is not an uncommon way to describe something where there's a range of possible things.
The more correct way is to think about it as a prisms. It is multi dimensional.
Also it is for autistic people. It grinds my gears when people say "everyone is on the spectrum", no, just no. Again it is only for autistic people and you need to have support needs to be diagnosed with autism. You don't get a diagnosis for being quirky and a little weird.
And no, just because someone is verbal and seems to be very articulate does not mean the person has low support needs or vice versa.
I find this take quite challenging, although I know it is one shared by a lot of autistic people.
I understand that if a person has no support needs, they cannot be diagnosed with autism. But that person may still be neurodivergent, and therefore to me it seems to follow that you have folks who are autistic with high support needs, and folks who are autistic with low support needs. Then, you have neurodivergent folks with no support needs. But this seems to me like a difference in degree, rather than category, and which would mean that the “spectrum” analogy works quite well.
With a clear understanding that I am not trying to minimise the struggles autistic people face, a sincere desire to learn, and an open mind, would you mind trying to help me understand?
Autism is something you are born with. It is simply who you are.
Support needs can change over time. You can need less help because you learn better coping strategies and have a stable environment or you can need more as you get older. It is not fixed.
Support needs are denoted in level because that is what system like schools and the like need. They don't really map to reality. Like for example a autistic person can have really bad sensory issues, being really sensitive to sounds, restricted diet and the like but decent social skill. Another autistic person might not have any sensory issues but really struggle with social stuff. Who needs more help? They need different kinds of help.
Thanks for replying! This above fits in much better with my previous mental model of autism: it’s intrinsic, it describes a “difference” in someone’s way of experiencing the world.
I’m still struggling to understand how this meshes with what you said above about only being autistic if you have support needs.
I don’t understand what implications that would have for someone who (for example) develops enough coping strategies that they no longer have any support needs. As far as I understand it, there’s no way to “cure” autism, so those folks would still be autistic but without support needs, which doesn’t seem to fit?
I don't think having zero support needs is realistic. If you have for example sensory issues like being sensitive to bright light or having trouble eating certain food then this doesn't go away. And just living in a world made for neurotypical people will always be a bit distressing and cause social problems.
Yes, there is a bit of a contradiction in advocacy because on one hand we want to spread awareness about the natural diversity of how humans brains work and remove prejudices and celebrate that diversity but also we don't want to minimize that it is a disability and people do need help.
> you need to have support needs to be diagnosed with autism. You don't get a diagnosis for being quirky and a little weird.
The problem is the people who actually have support needs are often not in a stable job with great insurance, and then they don't have access to the "get an official diagnosis" machinery. At which point you have to choose between respecting a self-diagnosis even if they're often wrong, or not respecting it even if they're often right.
Oh yes, absolutely. Self-diagnosis is valid.
It is still important to get a official diagnosis if one can but yeah the reality is that it can be a very long process and not in reach for some people.
I guess it depends on whether you consider RGB(0,0,0) to be on the same spectrum as RGB(100,0, 100) or RGB(100, 150, 100).
RGB(10,10,10) may be awfully dark but it's definitely not black. On the spectrum doesn't necessarily mean you have clinically relevant difficulties.
The more helpful way to think about is that the neurotypical brain is like RGB(63.32, 12.3, 73.02) but with thousands or maybe millions of variables. If certain values are significantly lower or bigger it might cause you trouble.
Having Autism is one cluster of values you can have. So is having ADHD. So is having Trauma. And many more things. And you can and often have multiple things at once and their symptoms overlap.
Everyone is on the spectrum, but only some are diagnosed with autism spectrum disorder. So there’s a tipping point or dividing frequency in the spectrum that moves people into disorder.
Having Covid is a spectrum from having nearly no or even no symptoms to having really bad symptoms. Just because everyone experiences having a running nose from time to time, does not mean everyone has Covid.
Autism is not the only way your brain can be different from other people.
It should just be called the "well actually spectrum".
And yet, colors themselves are arbitrarily chosen partitions of a spectrum.
Not exactly - there are very clear areas where everyone agrees the dividing line exists when you look a full spectrum map. Even most colorblind will agree with the areas in general (there are lots of specific color blind types but most will agree what area of the map is which colors even if you don't put any scale indications on the map)
No. Babies don't know how to color bin. They learn the color binning of their language. There are a few languages with different color bins and people who grow up in those languages bin colors differently--having a hard time telling apart colors we obviously see as different (but which map to one bin in their mother tongue) but telling apart subtle stuff we see as one color but they see as more than one.
There are languages with more colors but the bins are the same.
Not exactly. It's more like the bins get added in a more-or-less predictable order as the language adds bins.
https://gondwana-collection.com/blog/how-do-namibian-himbas-...
Within a particular culture that may be true, but for example the Japanese concept of blue/green is decidedly different from most Western concepts which consider blue and green separate colors.
Even then though we agree on the zones.
Until my wife and I are picking out home decor. Then all of a sudden nobody can agree on what color something is.
The dividing lines are the purest form of social construction. "arbitrary" for some people and "everyone agrees" for others.
I argued over a color names with a guy who later admitted he is color blind. So, no, we don't agree on zones. I mean, it was rather clear he is off. Basically, he has seen different color.
The current shitshow was the result of several misshaps and naive thinking
- Group together "rainman" type people (and people with even harder limitations) with "not overly social/minor social impairments"
- The current overmedicalization and diagnostication of everyday life wanting to label every minor difference between people
- Current "education was too hard, let's build accommodations" which is good but not when you can get any diagnosis by shopping for it
It is because how system works. You might be upset about label, but this is least worry for me but even people with great ability to perform as part of work team and no ability to form relationships need that help to get back into workforce and figure out what is actually going on with them.
Actually, the original word has nothing to do with continuity. That's a later adoption of it from Latin to English. So to be precise, you don't need continuity. It's just a re-adoption of the same word form the original Latin.
But many without autism don't have that need for precision so they get confused by mixing up later word use in different contexts like you did there.
The present day meaning describes a continuum. The term could indeed be defined in the anachronistic terms you describe so it is anachronistic, which is a reasonable complaint when something enters common usage. We see terms redefined all the time thusly
UPDATE I have exceeded my grace with HN spam controls
The confusion arises from the direct import of a medical Latin term which means what it means in Latin, into the modern colloquial- this is important information
Well, if one is being pedantic about a loanword one must admit the possibility of the word being loaned twice with different meanings. If one doesn't want to be pedantic, all manner of things are admissible, of course.
My dad likely had Asperger's. (Undiagnosed, but pretty much 100% he did). I have close friends with children who are very autistic. (Not completely non-verbel, but they say very few words and are still more likely to have a screeching meltdown than talk.)
My dad was highly successful; a leader in his industry and did a great job supporting us. His life was relatively easy (as easy as life can be in general) and he was a contributing member of society.
We love my friends kids to death and they do have many positive things going for them, but they will likely never be able to live on their own. Even if they do, they are in for a very hard life. They will likely always need to be supported by family and will likely never be contributing members of society.
To lump both those together is insane. It drives me crazy when people who are functional members of society run around laughing about how they are "autistic". I can't think of anything more disrespectful to those who can never have a "normal" life.
With that being said, I do recognize that medically there is a spectrum. I, as someone with ADHD am likely on that spectrum somewhere as well, from how the science is sounding these days. We need to make this spectrum obvious and respectful though. Why can't we classify a level or something? For example "Autistic level 1" for Asperger's, "Autistic level 2" for barely verbal, "Autistic level 3" for non-verbel... Something like that, so we can unite the cause, but still differentiate the effects and potential outcomes.
> It drives me crazy when people who are functional members of society run around laughing about how they are "autistic".
A lot of us low-support-needs autistic people are functional members of society right up until we aren't (i.e., until we've been masking for too long while dealing with sensory stressors and One More Little Thing pushes us into the "screeching meltdown" or renders us temporarily nonverbal). And a lot of us have "normal" lives only in as much as you only see the normal parts.
It's kind of fair to divide things up by support level, but you then also have to understand that there are a lot of different support needs people have and they can look very different at the same "level".
These levels exist since the DSM-5, which is not yet in use everywhere:
The DSM-5 introduced three ASD levels of severity: level 1 (“requiring support”), level 2 (“requiring substantial support”), and level 3 (“requiring very substantial support”).
https://www.autismspeaks.org/levels-of-autism has a good complete overview.
The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.
I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs (e.g. severe intellectual disability, nonverbal, severe self injurious behaviors). Those autism are very very different with very very different lived experiences....and yet, well-meaning autistic advocates often bristle at that idea, almost as if it is an attempt to divide and and destroy autistic advocacy. The neurodiversity vs profound autism battle for hearts and minds continues to rage, and even threatens how and what autism research gets conducted...sometimes with good consequences, sometimes with poor consequences.
I am a proponent of finding neurobiological bases for subgrouping autism into different clinically meaningful etiologies so that the debate can move forward productively. Its one reason that more and more I'd rather forgo acquiring non-autistic controls in my studies, but just look within the autism sample for how to parse the heterogeneity into homogeneous subsets
> I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs
You think a parent without any autism is more qualified to speak than someone who has autism but a different cluster of symptoms? Because being a parent makes you an expert on what exactly?
The is a video of the spokesperson of autism speaks. Her autistic child is in the room and can hear everything. She talks about how bad it is for her to have an autistic child. How she wanted to kill herself by driving down a cliff. Again, while her autistic child is in the room. She is acting like her child is not even a person.
Autism Speaks is a hate group of abusive parents.
Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Not by speaking for them but by taking down barriers so that they can advocate for themselves. Because guess what? High Support needs autistic people are still people.
Just because someone is non-verbal does not mean they can not communicate in other forms. They can advocate for themselves if given the tools.
Support needs are multi dimensional, one person might have sensory issues, another no sensory issues at all but more social issues. Who has more support needs? They are different. And they can change. You can learn better coping skills, you can need more or less support as you age.
1. I am not claiming that low support-need autists cannot advocate for hight support need autists. I am saying that I have encountered little evidence to support the idea that low support-needs autists have more insight into the needs and interests of someone who is nonverbal, intellectually disabled, and has severe self-injurious behaviors than others, including those who know and support those individuals daily. 2. Sometime being non-verbal is about trouble with expressive communication. But for others, it is an all encompassing impairment and communication, if much at all, has huge subjective/interpretative component by the observer. fMRI in these indivuals show near absence of activation differences for contrasts between passively listened to language and random noise. They absolutely cannot advocate for themselves, and to not understand this, which occurs in 10-20% of autism, suggests a blindness to the full spectrum, because those people are not seen, they are not on Twitter, they are at home with their loving and hardworking caregivers who should have a seat at the table.
The parents you talk about just seem like assholes.
> Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice.
Having low-support-needs autism is neither necessary nor sufficient for being a good voice for others. In fact, it can be a very bad thing, if they imply that the problems they face are similar to problems faced by high-support-needs folks. The focus in the media on low-support-needs individuals gives people the wrong impression of the autism spectrum's individual experience and broader societal impact.
I think a better form of advocacy is the YouTube channel "Special Books by Special Kids," which doesn't make a point of the channel's author having a disability (no clue whether he does), but rather just introduces viewers to a broad variety of people.
I'm pretty sure, that parents, that have autistic kids have not only autistic genes, but also some autistic behaviour. My mother is not diagnosed and she is quite unhinged female and sometimes also very logical. And she also have been talking about me crap with other people, so it perfectly describes autistic parent.
Unfortunately, but the main issue is that people, that are trying to take control of talking space are acting like humans do and in autistic circles they are most efficient at taking over... also, the obsession levels in activity is quite high, as that is topic that they are interested in.
> Autism Speaks is a hate group of abusive parents.
It's an indicator of the current state of affairs in the social media autism space that the only organization focusing on reducing the suffering of individuals with higher levels of dysfunction (i.e. requires lifelong support for basic needs) is demonized to this degree. Though it also makes sense as the most disabled autistic individuals do not post online.
Yeah except their treatment is just conversion therapy. It's inhumane.
It’s understandable that people with a milder form of autism would find it reprehensible that people want to “fix” them rather than simply accept a different type of person exists, but this really just ignores people at the harshest end of the spectrum who might be able to live an independent life if a cure were developed.
That’s kinda the whole argument behind more subgroups. Mild autists don’t need a cure. A subgrouping would help explain this.
There are plenty of conditions which are just “part of who you are” that still probably should be cured if possible, if for no other reason than to improve their quality of life.
This is a complete lie. Autistic advocacy group care a lot about people with higher needs.
Meanwhile autism speaks spends money for anti-scientific research to find out whether vaccines cause autism and how to find a "cure" for autism. Such a cure can not exist. Autism is something you are born with and that is part of you.
If you knew anything about autism then you would know that we speak about levels of care needs, not "low/high functioning". So either you are ignorant or did choose to use hurtful language.
> Such a cure can not exist. Autism is something you are born with and that is part of you.
Signs of autism generally show up in early childhood, but it has not been proven that it is something a person is born with. Vaccines have been studied enough to rule them out, but there are still a zillion other things that babies today are exposed to that could be a factor, from antibiotics to endocrine disrupting chemicals to microplastics to viruses or even something we're not even considering medically today.
Also, tons of birth defects and inborn diseases can be cured. We cure cleft palates and spina bifida routinely. We manage diabetes and Phenylketonuria effectively enough that patients can live regular lives. Here's a paper published in the prestigious Cell journal covering 700 different genetic disorders which can be treated today: https://www.cell.com/ajhg/fulltext/S0002-9297(25)00110-7
It's possible that in the future autism will have a cure, a preventative measure or a highly effective treatment.
there's a bunch of BS going on with autism that I find very obnoxious
1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that.
2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too.
3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.
I think “neurodivergence” is a better label if the goal is gaining strength in numbers. It fully encompasses autism and autism spectrum related conditions, plus ADHD and others. A lot of people don’t want the label “autistic,” but share experiences with people who do, and would love to offer solidarity as an “inside” rather than “outside” member of the community. We now have “AuDHD spectrum” as a thing, but really, I think optimum numbers might come from including folks who identify as “broadly neurodivergent.”
It also leaves room to start distinguishing/separating out more subtle variants of what we currently umbrella as “autism,” perhaps making it better defined in the future. And I kind of suspect doing this with “less profound” neurodivergencies could help folks with “more profound” (and rarer) cases.
To look at a historical case: Gay Rights didn’t make a lot of headway. But adding lesbians, trans folks, etc. ultimately did a lot of good for that community in the US.
I was recently labelled neurodivergent by a colleague at work, as far as I can tell this is simply because I am good with numbers and don't like parties. I'm not sure how I feel about this, I wouldn't say I am Autistic or show any representative characteristics.
Autism or well any form of neurodivergence are about how you work on the inside. It is not possible to observe how a person behaves and just diagnose someone. That is why getting a diagnosis is a whole process involving a trained professional.
Your colleague is full of shit. Generally, neurodivergence is for everyone who regularly experiences that the way their brain works causes them trouble.
Self diagnosis is surprisingly accurate but people also tend to under estimate the severity of their symptoms.
I don't really like the idea of my coworkers playing armchair psychologist with the people they work with. Especially if person didn't ask for it.
Symptoms of mental disorders can be normal human traits taken to the point it affects person so severely it's an impairment.
This means anything normal can be pointed to as evidence of a disorder.
Or so you think. Humans aren't any good at that whole "self-awareness" thing.
Even the "no empathy" sociopaths can spend decades thinking that they're perfectly normal, everyone is like them, and people just pretend to be sad and grieving at the funerals because that's some kind of established convention and breaking it would be very rude.
What I'm saying is: maybe you just think you don't show any signs of autism - because you think your experience is "normal", and you think that everyone has the same struggles as you do, even when it isn't true.
Or maybe you genuinely aren't autistic at all! It's just very, very hard to say at a glance.
> The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
Seeing it as one single conditions is established scientific consensus not some advocacy thing.
The diagnosis "Asperger's" was invented by Hans Asperger, a Nazi scientist that was responsible for the murder of many autistic children. It was never about science. It was invented because he thought that some autistic children might have a potential to become scientist and the like and therefore useful to Nazi Germany and some might not.
Hans Asperger decided which autistic children should be murdered and which one to be spared purely based on ideology.
Autism is something you are born with but support needs can change over your life depending on many factors like you environment, if you are diagnosed early and so on. They are not fixed.
> The diagnosis "Asperger's" was invented by Hans Asperger
No, it wasn't. The diagnosis of “autistic psychopathy”, which loosely corresponds to much of the range of the modern diagnosis of autism spectrum disorder was invented by Hans Asperger (Asperger does not seem to be the first to have described the condition, though he invented that name; a Societ doctor seems to have recognized a similar condition a couple decades earlier.) The distinct separate diagnoses of “Asperger’s syndrome” was invented later (the term seems to have first been used in 1976), and roughly corresponded to the “higher-functioning” individuals within his diagnosis of “autistic psychopathy” that Asperger described as potentially socially useful.
This is highly accurate. Presently its a whole set of entirely different diagnosis make up "the spectrum".
They even eliminated "Asperger" and then just folded that into the spectrum as well.
I sometimes think about two women sitting on down on a bench. Once says a bit uneasily "my son, well he is on the spectrum" The other responds with "Oh I know what you are going through my daughter is also on the spectrum"
At this point neither has any idea whatsoever about what the others experience is like.
One may be highly functional, socially awkward and doesn't think like normal people and processes sight and sounds the same. I find myself moderately down this path.
The other may be non verbal and violent.
If you have met one person with autism you have met one person with autism.
This is true for anything else and no argument against the current diagnosis.
There are people with Covid that ended up in the hospital and people with Covid who barely had any symptoms. Both have Covid.
Autism doesn't work from "little autism" to "a lot of autism". One person can have strong sensory issues but decent social skills. Another bad social skills but not sensory issues at all. And care needs can change over your life, they are not fixed.
The crucial difference is that we know the etiology of COVID and so are justified in treating those two people as having the same disease. Autism is much more complicated because we don't have a thing to define it other than a bunch of disparate symptoms.
It might turn out like if we treated the cold, COVID, tuberculosis and lung cancer as the same thing because they all involve coughing.
We know that autism has a strong genetic link.
Furthermore we employ differential diagnostic and check whether your symptoms could be better explained by another condition. You don't just diagnose people with autism because they have a few symptoms.
Furthermore autistic people can generally relate to each other. Even if two autistic people show very different symptoms there is often a feeling of belonging together.
It is always possible that we will learn more in the future and maybe we will have other diagnosis criteria or discover some people currently diagnosed under autistism would fit better under something else.
However the current diagnostic criteria for ASD is the current state of our scientific knowledge. A lot of clinical research is baked into it.
> It might turn out like if we treated the cold, COVID, tuberculosis and lung cancer as the same thing because they all involve coughing.
Well there are 200 different viruses that cause the common cold. We lump them together because they all involve coughing.
Basically all cancers are unique, even for the same type of cancer. Again, these are lumped due to shared symptoms.
Tuberculosis is caused by 9 different species of bacteria, but these are at least related species.
Covid is basically exactly the same disease as SARS, just caused by a particular strain of coronavirus, though that strain divereged into multiple ones that now produce quite different symptoms. In addition to SARS, other coronaviruses are among those 200 that cause the common cold.
Diseases are historical groupings that someone at some point thought would be useful, nothing more.
> normal people
We usually use the term "neurotypical". Autistic people aren't abnormal, the are different.
I’ve long thought that autism is basically a few thousand very normal, small neurodivergencies (which may each be compounded with social effects). The absence of any of them is “perfect functioning human cog/prime chunk of workmeat.”
The presence of too many/particular ones of them is notably disabling for certain tasks, or makes perceiving some things difficult (and other things easier). But I think the presence of some is preferable to having none, and implies “can think abstractly for/about oneself.”
(And yes, a lot of the “problems” that arise with folks on the spectrum happen because, well, being aware of yourself as a cog/workmeat creates friction… It’s important to keep in mind how much of our history of psychological medicine that created the label “autism” is ultimately oriented towards “fixing the cog/workmeat.”)
I agree with your take but interestingly it seems to be both an argument for, and against, calling it a spectrum. Humans are so good at adapting/conforming/masking, and we adjust ourselves toward a common accepted way of behaving, which further confounds the difficulty in understanding the problem.
I think the "spectrum" analogy has reduced stigma overall, especially toward people with poor social skills. But it isn't always helpful.
> presence of too many/particular ones of them is notably disabling for certain tasks
Setting asside the very clear science of neurodevelopmental causes, in practice your description is very helpful way to describe it.
(Ive often myself described it as a standard deviation beyond 2 sigma in a normal distribution with 500 dimensions.)
The traits associated with autism are naturally present in the population in healthy and useful ways.
Matching a large fraction of the definition may pose no problem for alot of people. But another smaller deviation in another sub permutation may be detrimental to live a normal life.
So it's really difficult to draw a line between "condition" that need assistance and just outlier human that like trains.
I mildly match a significant fraction of the diagnostic criteria myself, but have had a rather easy time. I don't need special resources, and feel wierd to count under a medical term.
But recognising the traits of ASD had allowed me to find quite a lot of good practical advice that improve my life significantly. So the broad definition has been helpful.
Yeah I agree. I see it something like this as well. I often feel like calling it an "illness" or even "disability" is kind of a misnomer, because having traits that are encompassed by the definition of "autism" are often actually strengths and advantages (to an overwhelming extent, not in just some weird edge case situation).
Approximately 50% of people with autism have intellectual disability.
The people without intellectual disability are more convenient to recruit for studies. As a result, across a wide variety of studies on autism, only 6% of autistic participants had intellectual disability.
https://link.springer.com/article/10.1186/s13229-019-0260-x
My son has "autism". He is 25 and needs constant supervision and care.
I feel that the word "autism" is now meaningless. I must know 50 of his cohorts and even though they're all "autistic" they can be quite different.
I also agree that his needs are underrepresented and drowned out by those mildly-affected who have the mental capacity to speak out for themselves.
Autism seems more like a symptom than a condition.
"Stomach ache" is not a spectrum disorder, even though is comes in many severities. It's a symptom of dozens of different medical conditions.
I suspect "autism" is similar.
Autism isn't a symptom because Autism Spectrum Disorder isn't a singular "thing" it is a combination of features that manifest in various "symptoms" - eye contact avoidance (or the opposite), sensory processing (over- or under-stimulating), restrictive interests (singular focus), etc.
A stomach ache is a single manifestation of something happening. A stomach ache can have varying degrees and reasons behind it. The stomach ache is the signal. The disorder that causes it could be psychological (GAD) or external (someone punched you, and the flesh is bruised) or internal (someone fed you a weeks old egg salad sandwich).
In autism the 'symptom' could be model train enthusiasm or being nonverbal. There are a lot of symptoms the fit under the umbrella of the disorder.
From my lived experience and also from the preprint I love very much https://www.thetransmitter.org/spectrum/untangling-biologica... the autism spectrum is basically a collection of ways a brain can largely work differently than "normal". There's a limited number of these (4 according to current research). It's not that there's just individual small features that manifest in things like eye contact avoidance, over/understimulation, etc. it's that the entire brain will work a specific differently and result in a certain set of symptoms consistent with an autism diagnosis. I feel like autism helps form the basis that other neurological differences happen on top of, because it has such a large impact on how thinking and learning even works in the first place. Even in conditions like schizophrenia, psychosis, etc. you see thought loops or detachment from reality or delusions or any number of those kinds of dysfunctions but it all still happens on a base where there can be basically one of the four autisms; the autism seems to be a difference in the foundation that the rest of the brain is built on top of. It's very fascinating to me (I am very autistic). Of course I don't mean to say at all that each autistic type always results in the same brain function but just that usually other difficulties or differences are less fundamental than how autism changes practically everything.
I definitely agree. It shouldn't be "autism spectrum", it should be "autism syndrome".
When we have a cluster of symptoms that travel together we can see there's an underlying issue without knowing what that underlying issue is. And we normally use the word "syndrome" for that. For example, AIDS or IBS. And society tends to dismiss it for as long as possible because to face it is to admit there's a problem with no answer. For an example that's still in the denial phase, look at long Covid. There's clearly something there, like AIDS it's a slew of apparently unrelated issues. Which says that, like AIDS, there's probably some underlying issue that is itself very hard to see and we are only seeing the secondary effects.
To me autism is defined by how some of our genes work(or doesn't work). I'm not into analogies, but the difference between normal Aspie and nonverbal person is not that big - by using your analogy both of them have stomach pain, but the result seems to be wildly different - one of them is able to communicate almost like other normal humans and they can't even tell that Aspie has a stomach pain.
As for different medical conditions - imagine, that previously mentioned Aspie in different environment can have stomach pain, because it is caused by environment and not by stomach pain. Yes - there are some medical conditions, that also comes from genetical conditions and those just happen to be in neighbourhood to autism for no other reason than just general damage to DNA. And the issue here is that we actually do not fully know how DNA functions - only some of the bits.
https://archive.ph/zOQv5
What's with these archive links these days. I just get locked behind "Are you a human" clicking and random captchas.
I didn't realize these archive links were still working. Ever since the FBI order in November, these links have just been hanging for me. https://downforeveryoneorjustme.com/ had been saying it was down so I just thought it actually was down for everyone, but I continue to see these links posted. Is the site still working for some people?
The blocks tend to be implemented at the DNS level, so you can usually connect by using a different DNS server. The Tor onion link works fine as well, and that URL is on the archive.today Wikipedia page.
https://en.wikipedia.org/wiki/Archive.today
> archiveiya74codqgiixo33q62qlrqtkgmcitqx5u2oeqnmn5bpcbiyd.onion
via this post on their blog:
https://blog.archive.today/post/711271973835227136/did-somet...
Thank you both, this explains a lot..
I’m kind of glad it’s happening so that folks here have to reckon with being the world being full of copyright trolls rather than having some easy “let the nerds have it only for us” solution.
Stop posting paywalled shit on HN please.
I think the popularity of the description of autism as socially awkward supergenius hurt a lot the children with the variant "I can't tie my shoes or even speak" and their family
I'm concerned that the identification of genetic subtypes of ASD, as mentioned in the article, will lead to more terminations of pregnancy. We need people that see the world differently.
There are 8 billion people from a multitude of backgrounds and experiences. We’ve got plenty of viewpoints.
People get abortions because it’s financially inconvenient or a bad time or something else trivial constantly. Surely a lifelong affliction isn’t that hard to understand the motivations behind.
The most easily identified "autism genes" (eg "fragile X") tend to lead to severe variants of the condition, which probably don't benefit anyone. We may eventually have a "Gattaca problem" but this isn't that, at least not yet.
You are obviously a male - when it comes to providing best genes from rich individuals, there seems to have been no shortage of females that wanted to have babies from Elon Musk with his autistic genes...
I am forgetting how serious ASD people can be without having able to make any jokes. Relax, dude - by the time when government will be able to provide such services, all the humans will have autistic genes - there clearly are some natural advantages to people, that are multiplying with those genes and spreading them around. And unfortunately to say this, but natural selection is the only thing that will weed out those so called "heavy autistic cases" and they will cease to be a problem in time.
Yup, autism spectrum tends to strongly mess with your ability to find a romantic partner. And that is decidedly selected against.
However, I don't think the random nature of evolution will have a meaningful effect on humanity going forward. We will soon reach the point of selecting for more desirable genes. Done badly it would be Gattaca.
> Robert F. Kennedy junior, America’s health secretary, thinks that autism has become an “epidemic” in his country. His concern stems from figures from the Centres for Disease Control and Prevention, which shows that the condition now affects 32 per 1,000 eight-year-old children in America (see chart). That is in contrast, he says, with the near-absence of the condition in his childhood. Mr Kennedy was born in the 1950s, and studies estimate a prevalence of autism to around two to four per 10,000 in the 1960s.
I'd note that RFK Jr.'s very own aunt was lobotomized then hidden away for something that sounds a lot like autism if diagnosed today. https://en.wikipedia.org/wiki/Rosemary_Kennedy
Read any old book (like from the 1800s), or look into anyone's family history. There is always some version of "Larry never leaves the farm". Nobody every diagnosed "Larry" so we don't know what he had and often we only have a small fraction of the symptoms recorded, but what we have sounds suspiciously like Autism (and one of a dozen other things we now have names for)
Yup. Or if they were rich, "eccentric".
https://en.wikipedia.org/wiki/John_Bentinck,_5th_Duke_of_Por...
> The tunnels under the estate were reputed to have totalled 15 mi (24 km), connecting various underground chambers and above-ground buildings. They included a 1,000 yd (910 m) long tunnel between the house and the riding house, wide enough for several people to walk side by side. A more roughly constructed tunnel ran parallel to this for the use of his workmen.
> The duke was highly introverted and well known for his eccentricity; he did not want to meet people and never invited anyone to his home. He employed hundreds through his various construction projects, and though well paid, the employees were not allowed to speak to him or acknowledge him.
> He ventured outside mainly by night, when he was preceded by a lady servant carrying a lantern 40 yards (37 m) ahead of him. If he did walk out by day, the duke wore two overcoats, an extremely tall hat, an extremely high collar, and carried a very large umbrella behind which he tried to hide if someone addressed him.
> He insisted on a chicken roasting at all hours of the day and the servants brought him his food on heated trucks that ran on rails through the tunnels.
Hey. I have a house and I have a plans to dig tunnels under it. I will first terraform garden, so I can better access whatever is under my house.
Yeah, nobody wants to speak with me anyway - they just scurry away, so no problem with that...
Pugsley's tunnels! The Adams Family old black and white tv show...
I think this explains at least some of it. In my childhood (1970s) as best I recall, these kids were hidden away. They went to separate special education schools or a separate classroom in the main school and didn't really mix with the rest of the kids. Today the attempt is made, for better or worse, to mainstream everyone as much as possible.
It still feels like there is more autism today compared to then though. I would guess that it's some combination of more people waiting to have kids until they are older, environmental factors, mania about cleanliness and sanitizing everything, maybe social factors such as putting more kids in daycare at a very young age, IDK. I'd say the same thing about asthma and food allergies too, seems that half the kids today are allergic to something, need inhalers, etc. It was unusual among my friends as a kid, at least I don't remember it being common.
(read the other replies first, they make good points)
I knew plenty of kids in the 1970s that were "a little off" (probably including me), but they were not so bad that we would remove them from society which was the only option back then so we called them normal. Now that we have treatment we give it not only to those so autistic that they can't function in society at all, but also those who could function but not well and treat them.
> I'd say the same thing about asthma and food allergies too, seems that half the kids today are allergic to something, need inhalers, etc.
I mean, if you were deathly allergic to eggs in the 1800s, you died. Very early.
If smoke sent you into respiratory distress, you died. Very early.
Or see the "left-handedness epidemic". It is probably not massively more prevalent now than it was in 1900s, even if that's what the stats say. https://www.researchgate.net/figure/The-overall-rate-of-left...
No real argument, but I'm not talking about that long ago. When I was a kid, lots of parents smoked, in the house, in the car, everywhere. My father did. Yet I don't remember any of my friends having asthma or using inhalers. Peanut allergy is very common today, among my kids friends, several of them had it. Was almost unheard of when I was a kid, schools served peanut butter often at lunch. Nobody was ever asked what food allergies they had.
It's possible my anecdotes are not representative, but this is just what I have observed.
I think the argument still applies on a shorter timescale. The child mortality rate in the US fell from 26 per thousand in 1970 to 7 in 2020 [1]. It seems reasonable that some portion of kids that now have treatable but persistent illnesses such as allergies/asthma would have died just a few decades ago.
[1] https://www.statista.com/statistics/1041693/united-states-al...
Absolutely. Most of the "epidemic" that Brain Worm is pointing to is the result of removing a lot of the removable causes of death.
https://commons.wikimedia.org/wiki/File:Asthma_prevalence.pn... looks relatively steady over the last ~50 years or so.
> Asthma was recognized in ancient Egypt and was treated by drinking an incense mixture known as kyphi. It was officially named as a specific respiratory problem by Hippocrates circa 450 BC, with the Greek word for "panting" forming the basis of our modern name. In 200 BC, it was believed to be at least partly related to the emotions.
Theodore Roosevelt had asthma.
Peanut allergies might be caused by poor advice in some cases. There was a period where people believed that babies should be protected from any food allergens, in case they were allergic. Later research suggested that early exposure to allergens might actually prevent allergies.
You don't notice nearly as much as a kid as you do as an adult; nor do you get a representative picture of your friends.
Beyond that, there's a question of, while maybe they didn't have an inhaler, how many needed one but didn't get one due to awareness or whatnot? Or how many people had allergic reactions, because we didn't ask about their allergies?
> I think this explains at least some of it. In my childhood (1970s) as best I recall, these kids were hidden away.
Depends. My childhood was in the 70s. Autistic kids with low support needs were labeled "gifted" and sent to the "gifted program" classroom one day a week. Autistic kids with high support needs were labeled "retarded" and kept in the special ed classroom all week.
In the 1970s it was still easy to just abandon the school system. Kids who didn't obviously thrive were usually treated as family burdens, and still mostly removed from society.
They also usually died young.
People with ADHD for example, are more prone to abusing drugs and alcohol. How many people died from alcoholism who were untreated ADHD cases?
>It still feels like there is more autism today compared to then though.
This is objectively true, do you know why? We changed the name of really poorly functioning people in some cases from "Mentally retarded" to "Autistic".
That's it.
Look at a graph of generic "mental retardation" diagnosis and it's fall coincides with the "rise" of autism diagnosis. Those people were always actually autistic, but we did not have the institutional knowledge and tools to know that, because the science of psychiatry and psychology is still in its infancy and struggled with rampant a-scientific thought even into today. Jordan Peterson for example is a "Jungian" trained psychologist even though that's not science, and he was fired when his college discovered he was leaning more on that unscientific worldview than actual hard science in his college courses.
>I'd say the same thing about asthma and food allergies too, seems that half the kids today are allergic to something, need inhalers, etc.
The food allergies is real because a bunch of doctors were "nervous" about babies with peanut butter allergies, and without any scientific study or consideration, spent over a decade recommending parents not expose kids to peanuts.
Now that we have actually done the science, we know that was dead wrong, completely irresponsible, unscientific, and directly responsible for something like 8 million fully preventable peanut allergies. That's what happens when you let even medical professionals use their "intuition" rather than hard data. This is why medical studies blind those professionals. Doctors are not usually scientists.
There is no education that removes human biases and cognitive missteps, and it is impossible to cure yourself of the standard human fallacies. Statisticians can still become gambling addicts, and can still suffer from gambling fallacies when not being rigorous.
>I would guess that it's some combination of more people waiting to have kids until they are older, environmental factors, mania about cleanliness and sanitizing everything, maybe social factors such as putting more kids in daycare at a very young age, IDK.
The only one of these with any real evidence is that Geriatric Pregnancy is a known risk factor for autism. Everything else is nonsense.
Don't feed into the rampant misinformation and malicious refusal to learn what is already known by throwing out baseless guesses and letting them carry any weight. How often has one of your customers correctly guessed what caused a bug without understanding, access, and rigor? You are doing the same.
> In the 1970s it was still easy to just abandon the school system. Kids who didn't obviously thrive were usually treated as family burdens, and still mostly removed from society.
> They also usually died young.
> People with ADHD for example, are more prone to abusing drugs and alcohol. How many people died from alcoholism who were untreated ADHD cases?
Or suicide. Look at the suicide rate amongst those with autism even now. And when people take themselves out of society with drugs or alcohol we don't put much into figuring out why they chose that path. I recall a bit in a book by an ER doctor--one of the frequent fliers, brought in because they were found unconscious. When asked if he knew what brought him to the ER, responded alcohol. And one time he admitted why: he had been a sniper in the Serbian war and it was the only way he could keep from killing himself.
I believe that to a large degree the "drug" problem is a manifestation of other issues.
> This is objectively true, do you know why? We changed the name of really poorly functioning people in some cases from "Mentally retarded" to "Autistic".
> That's it.
> Look at a graph of generic "mental retardation" diagnosis and it's fall coincides with the "rise" of autism diagnosis. Those people were always actually autistic,
Exactly. There is no epidemic of autism, there is an "epidemic" of better diagnoses.
It could be, but the Wikipedia article notes that she may have also suffered a birth injury from hypoxia.
Rosemary's story is so tragic and heartbreaking. Her life was filled with what would today be considered multiple instances of medical malpractice, and heartless, unethical behavior on the part of the Kennedy family. Her father didn't even tell her mother about the lobotomy until after it was done.
Incredible that she lived to the age of 86. The nuns taking care of her might have actually cared, which could hardly be said of the Kennedy family.
Those are not unrelated. Both from my family and from looking at the research, there's a strong correlation between long/difficult births (sometimes explicitly hypoxia) and autism.
Not that long ago (in the last decade) I spoke to a researcher working to identify autism in the womb. Seems odd thing to chase if it’s caused by birth difficulties.
Would you mind pointing me at the research you found? I've been looking for studies that correlated hypoxia and autism (and related interventions that might help) but I haven't been successful.
The Rosemary Kennedy story is tragic.
JFK was great in some ways, but that political dynasty had serious problems even before RFK Jr.
The Wikipedia article paints this as partly driven by the political aspirations of the patriarch. I suspect this is yet another example of we'd be in much better shape if the US didn't have quasi-royalty, nor families aspiring to that.
The only reason JFK was JFK is because his older brother was killed in an aircraft mishap in WWII. Joe Kennedy, Jr. would have gotten the big political push if he'd lived.
I got my diagnosis shortly after the DSM-5 release but my psychologist also gave me the DSM-IV Asperger's diagnosis at my request. I tell people I'm an Aspie, and that it is considered to be on the autism spectrum. I prefer the Aspie label because it is more specific. My interpretation was that the DSM-5 grouped it under autism spectrum distorders. I've never met a psychologist or psychiatrist that considered the autism spectrum to be a single condition.
One thing that interests me is the overlap between ADHD and ASD. My family seems to have a mix of different strengths of both. Some overlap of problems, e.g. executive function, emotional regulation, hyperfocus on topics of interest, suggests to me there needs to be a re-assessment of both conditions.
The overlap also makes it difficult to diagnose ADHD when both are present.
The co-diagnosis of autism and ADHD became possible with the DSM-5 in 2013. According to the scientific literature, 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD).
https://pmc.ncbi.nlm.nih.gov/articles/PMC8918663/
This is true of many conditions that seem to be one thing but are actually, in all likelihood, many unrelated conditions with overlapping symptoms.
Particularly when it comes to the brain. It's a reflection of how little we know about it.
It's difficult because the variance is so wide.
To compare: Three profiles of people with diagnosed Autism.
Blindboy Boatclub: An Irish satirist who wears a plastic bag on his head in public appearances. Formerly of a band called The Rubberbandits. Today he is known for his podcast and has authored three books of short stories. He comes across as eccentric, but he's quite capable of managing in society otherwise.
Side note, one of the other members of The Rubberbandits went by the moniker of Mr Chrome, but is better known to people as Bobby Fingers today.
My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
Wife's student: My wife is a special education teacher and she has a student who is completely non-verbal. However, he is noticeably intelligent and can form complex thoughts and can attempt to express them. Managed to use his visual communication device to insult one of his teachers based on her appearance. He will likely have issues for his entire life and will likely need constant therapy.
Now, what one thing can we do for these three very different autistic people?
There's a reason people say "When you've met one person with autism, you've met one person with autism". While there are some commonalities and typical comorbidities, what we regard as autism presents in so many different ways, it's incredibly difficult to construct a single program to address it.
And I can see why we'd want to break it up. But that gets difficult as well. My stepson started low-verbal. Didn't speak for a while. Spoke rarely for a while longer. And now he speaks a lot. And he's learning when it is appropriate to speak and to handle people speaking around him but not to him. So he was non-verbal. But then became verbal. But not all autistic children cross that border.
All that to say: I dunno. Shit's complicated, yo.
> My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
As someone with some similar issues, a) my motor skills are fine, b) the focus on tieing shoes is so frustrating; velcro shoes are everywhere, you can even get Dr. Martens high boots with zippers so you don't have to tie them... like sure, try laces and if it works great... but just provide the accommodation and move on. :P
On the plus side, everyone said playing video games would help my fine motor skills, so I got an out to play a lot of video games, which I enjoyed. :D And my atrocious penmanship hasn't been an issue in adult life, because nobody writes anything anymore (and have you seen the penmanship for kids that were in 2-4th grade during covid ... it's worse than mine!)
Reacting to the headline, I understand the basic concept of medicine is you treat a patient who presents with a condition, not a condition in isolation like some kind of abstract math problem. I think it's a mistake when doctors say to each other, even as a shorthand, I have a gallbladder to deal with, when it's a real person, and the best results come from considering the whole person when pondering how to care for them and which treatments to administer, with the medicine being only a part.
It is perfectly reasonable for the doctor to have "a gallbladder" to deal with--there are few failure modes and a standardized response to them. In specialized fields you will find professionals describe situations in terms of a baseline and any deviations from said baseline--just about completely unintelligible to anyone who doesn't know those baselines. To describe a patient as "a gallbladder" is saying it's a standard presentation of the problem. And doctors are not supposed to identify patients if not necessary.
You are speaking commendably from the point of view of diagnostics but from the point of view of physical operation you absolutely need that specialisation.
I've been saying this for years. It is more of a cluster I think.
I think we will slowly come to understand that we all start neurodivergent and only some people converge.
Ironically very accurate for an en vogue theory of how autism occurs.
Babies are born with many more neural connections than most adults have. The learning process appears to include a "winnowing" process. OTOH, autistic individuals appear to have a larger number of neural connections, which suggests that they did in fact "not converge" (or not weed out excessive connections that distract from more productive decision-making).
ironic how?
Autism emerges from higher intelligence: https://pmc.ncbi.nlm.nih.gov/articles/PMC4927579/
If anyone must be branded atypical (not saying anyone should but am willing to pushback on those who do) and in need of special attention it should be the historical story-mode dependent who cannot move on from childhood allegory.
Which is probably why the causes of these diseases are so well masked.
https://archive.is/zOQv5
I will admit that I stopped reading the article because I think the article is completely mixing things up and honestly just did not feel like reading anymore of it.
I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
This isn't a post diagnoses understanding either, it is well understood by anyone I have talked to about this in the last 10ish years? (maybe less, I cant really pinpoint that).
While I feel like there is value for professionals to be more specific about it, from an everyday person prospective I feel like "Autism" is well enough understood to be not just a single thing. Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
The real problem is anti-science people joining the conversation, but splitting up Autism is not going to change that.
Edit: To be very clear here I am not trying to say that most people in general are saying "I am somewhere on the spectrum". I am saying that most people I know which a larger portion of the people I regularly talk to are also diagnosed.
Understanding autism as a spectrum does not at all imply that its multiple conditions. Just one with varying severity.
It's not a one dimensional spectrum with just severity as variable. It's a multi dimensional spectrum, you could potentially assign a "condition" to each dimension (hypersensitivity, OCD, rigid thinking, non-verbality, ...)
But virtually everyone in the field does believe there are many different mechanisms behind autism, some of which have little-to-no overlap either in the mechanisms themselves or necessarily even in the presentation.
Many scientists believe that one day we will likely be able to split off at least some of the undifferentiated mass of ASD into potentially completely unrelated disorders that may share a lot of aspects of presentation.
For example, we may find out that one set of genes combined with cytokine storms in utero cause dysfunction in synaptic pruning, while another set of genes combined with gut dysbiosis may affect brain plasticity in the critical period of early childhood. Those would be two completely unrelated conditions, with overlapping symptoms for some (but not all) who have them.
The reason we say "somewhere on the spectrum" is there are a lot of high functioning people who have a few autism like symptoms that benefit from some autism treatments. You can change the name/diagnosis what you want, but in the end we need to get people the treatment they need.
That's the benefit of a broad diagnosis. Narrow diagnoses make it hard to get specific treatments for problems.
That's my main concern about trying to split up autism. It's all well and good for study purposes, but for "can I get my insurance to pay for my kid's occupational therapy" purposes I'm really skittish about such a breakup. All the sudden my kid might have "omegaism" or whatever and boom, it's uncommon for them to need OT so insurance won't cover it.
That's exactly my issue with "autism" because it feels like lumping a bunch of things together just for the sake of simplifying health care. Meanwhile you have a bunch of people that have completely different symptoms, experiences and causes with the same diagnostic.
The vast amount of treatment for autism is therapies.
It really doesn't matter if the underlying cause is very different in terms of treatment because a speech therapist works the same with a kid with autism as they do with a kid with down syndrome.
If there were more pharmaceutical interventions then I might care a bit more. But there's just not.
In terms of the research, the researchers already have tools to sort and filter individuals based on their specific set of symptoms. Just because 2 people share an autism diagnosis doesn't really impact the research.
What objection do you have other than not liking that it's not a "pure" diagnosis?
It's lumping a bunch of things together because they are empirically linked together
People with sensory issues often also have more cognitive rigidity for example.
Autism, and many other psychological disorders, are quite literally just a lump of symptoms and presentations, because we do not have better options.
Sure, it makes navigating american health insurance easier if you can just say "Autism" and get various treatments paid for, but very similar diagnostic criteria and definitions are used in countries with fully socialized medicine.
Those people with those linked issues tend to benefit from similar treatment, and that's the entire point of a diagnostic criteria.
All the complaints come from people who seem to just not like the vibe of that?
Deal with it. Go fund more research into the heritability of neurodivergent pathologies if you want a blood test.
Some day we WILL be able to separate "Autism" into very specific diseases with specific causes, and some of those causes will have a genetic test. Unless we kill the concept of medical research because we elected morons who tear apart our institutions.
I have "Impaired vision", and I share that with people who are profoundly (but not totally) blind, and it does not matter that I can drive with glasses and they can't, and the name of that condition is not the important part.
All this handwringing about "but but but my mildly autistic son is mostly functional and I'm sad that he has the same name of condition as someone who cannot be educated past a 3rd grade level" is stupid. It does not benefit anyone struggling with autism to complain about it.
Are you aware that we have multiple medical conditions called "Palsy"s, and that they have drastically different causes and effects, such that my sister's Palsy which was caused by medical malpractice and prevented her from using her dominant hand in some cases is very different from my schoolmate's Palsy which left her wheelchair bound and requiring professional help day to day? They are both palsy because they are (partially) movement disorders stemming from nerve damage or dysfunction.
The horror!
I honestly can't help but feel like the main point of people whinging at autism being a broad diagnosis is because they don't like that it makes getting treatment easy (especially coming from "the economist").
Maybe I'm not being charitable. But that really does feel like the only real outcome of trying to piecemeal the diagnosis.
I don't believe research or treatment is negatively impacted in anyway by the diagnosis being broad. If anything, that opens doors so that research isn't accidentally too narrowly focused.
The problem with broad definitions is that it causes false negatives in potential treatments. If you have a treatment that's effective on 10% of your group and useless on the rest you need a sample ten times as large to find an effect.
Or, consider TPA. It is an extremely dangerous drug (used correctly it still has greater than a 1% chance of killing the patient), if you administer it to "stroke" patients you almost certainly do more harm than good. The reality is that if you use it on a bleed type stroke it can (and likely will) only make things worse. Use it on a clot type stroke and you might save them. We of course know this and only use it when a CAT has confirmed it's a clot--but what would happen if we didn't distinguish the two cases?
As I said elsewhere
> The vast amount of treatment for autism is therapies.
> It really doesn't matter if the underlying cause is very different in terms of treatment because a speech therapist works the same with a kid with autism as they do with a kid with down syndrome.
> If there were more pharmaceutical interventions then I might care a bit more. But there's just not.
There are a limited set of drugs involved in autism therapies, but they are general drugs that would be applied regardless the diagnosis (for example, antidepressants.)
In fact, it's much like depression in that sense in that it's a very broad definition with a number of causes. Some antidepressants even work better or worse for people.
I can't help but notice people want to define 'real autism' as only those who are impaired to the extent that they can't advocate for themselves, which conveniently means never having to listen to an autistic person's opinion on things. If you're communicating clearly, even through text on the internet, then you're just a quirky adult who is talking over the people with 'real problems'.
I'm rather dismayed by the recent outpouring of articles about splitting the diagnosis up by people who don't even have a horse in this race but have somehow become qualified to weigh in on psychiatric diagnosis.
The diagnostic criteria isn't based on whether the condition is treatable.
For example, nobody who is diagnosed with autism is proclaimed "not autistic" if they find therapy to be unhelpful.
Yes, but the whole point of diagnosis is we have treatments for those things that usually [sometimes] work and so we need to diagnosis people because that is the first step in getting them treatment.
So... you agree with what I am saying?
My point is, if it is commonplace to refer to Autism as a spectrum we are already acknowledging that it is not a single thing.
Which seems to be the entire basis of this article while also mixing in the rambling of someone anti-science that frankly won't change even if it was split up.
I don't know enough above the subject (and what I could make of the article isn't helpful) to know if I agree or not. We should split Autism if we can conclusively separate people into the different diagnoses and then give them the correct treatment (which would be wrong for the other). However if we still give the same treatments in the end there isn't any point even if we can find different symptoms to result in a different diagnosis.
As science learns more (or I learn more) I reserve the right to change my position.
If a person can take care of himself, hold a job, and generally not burden anyone else why does he need treatment? To try to make him into whatever we consider "more normal?" Just let him be who he is.
The entire point of diagnosis is because a person needs help.
The point of treatment isn't to "fix" or "make normal" someone. It's to give them the tools needed to participate.
For example, someone with autism might be more prone to having a meltdown. What therapy does is give them the tools to both identify that they are on the verge of such a meltdown and to de-escalate themselves.
The point of treatment is to help someone take care of themselves, hold a job, and generally not burden anyone. It's also to help a person feel better about themselves.
Look at the percent of those with autism who never marry. You think that's because they don't want to?!
Look at the percent of those with autism that commit suicide. (And how many slow suicides of drugs or alcohol?? I don't think we even have a ballpark for this.)
It's not just whether they can take care of themselves.
Because deficits in social functioning often lead to the person experiencing emotional suffering and difficulty in friendship, career and relationships, often causing them to develop other conditions like depression and anxiety. This can be true even if the person is holding down a job.
It's a personal decision. I haven't gotten a diagnosis because I've been able to hold a job for many years, and I'm married, so I'm mostly fine. But I have spent my life avoiding most human contact, precisely because I know I'm incompatible with them, and people often want to know why I never leave the house.
I don't think there is any treatment. I think it's just a set of skills that you learn in case you want to try to pursue activities that most neurotypicals take for granted. It seems like a lot of work to me, and maybe it would be easier to just let things be, as you're saying.
I know what my limitations are and I can observe others doing the things that I can't do, including my own wife, and I imagine what life would be like if I could do those things too. But it mainly boils down to having FOMO, and thinking about how much work you want to go through in order to be able to do some of the things that you're having FOMO about.
The diagnostic criteria would exclude someone from an autism diagnosis unless they had persistent deficits across time and context.
Your example person may function well within a narrow band of capability - the purpose of treatment/support is to expand that band and help maintain it. I'm not advocating forcing support on someone that doesn't want it, but I am for improving someones quality of life by expanding their choice of occupation and social environment.
Without any external support I would wake up, work, sleep, repeat. Eating? Cleaning? annoyances that just interrupt work.
I've made a lot of money doing that but it's unfulfilling and at times, disgusting.
If you want to live in a society that leaves me be - I won't starve to death but I'm never going to have a partner or a family without external services like psychology, occupational therapy, social events.
Whether I pay for these services or someone else does it doesn't matter. I want them to be available for people like me to understand that we are not alone, there's a reason we can only exist comfortably in our narrow slice of the world, and if we want to leave our bubble there is support available.
Is that person happy? Would/could they be more happy?
> To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
I'm not entirely sure why this comment is apparently so controversial, but I think people are confused by this. My reading of it was that you meant "most autistic people you know", and you yourself are. Maybe I'm wrong?
That is exactly what I meant to say which is why I added an edit. I for sure could have phrased that a lot better.
Now yes there are people who are undiagnosed for whatever reason (including some people I know that don't see the point after being diagnosed with ADHD, I know personally I had to have this conversation with my psychologist to determine if there was a point to actually do it at that point) that use that phrase and it gets a bit tricky.
But nowhere am I trying to imply that *everyone* is saying this.
> I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
Couldn't disagree more. The "autism is my super power" movement is borderline offensive to people dealing with severe or low functioning autism.
Dismissive, uninformed comment.
???
In what way is GP being dismissive, or taking the "autism is my super power" position with that comment?
I have never in my life used "autism is my super power" so please don't put words in my mouth. I will agree that it is offensive but that is very different from saying "somewhere on the spectrum" when I don't feel like having a more in dept conversation.
And again my point is that contrary to what the article seems to be trying to make, no one really considers Autism a single thing.
I'm not putting words in your mouth. What I'm saying is, if we had different names for different types of autism, saying "autism is my super power" wouldn't be such an issue.
And if "no one considers autism a single thing" THEN WHAT IS EACH THING? lol
> And if "no one considers autism a single thing" THEN WHAT IS EACH THING? lol
We don't have a name for every color on the light spectrum, nor can the average person tell you what's different about #FF0000 vs #FE0000. They still exist!
Autism should not be treated as a single condition
No one is disagreeing with that.
People are trying to point out that the "spectrum" thing is the medical field doing precisely what you're asking for.
Please point me to anywhere that it is treated as a single thing that isn't the people using Autism to push an anti-science agenda.
It is an Umbrella term that is well understood to be a "spectrum" and well understood to not be the same for 2 different people.
My question though, what is the point of separating it. What do we actually gain from doing so? I guarantee you these attacks will still exist.
I don't have a degree in this but I have to imagine there was a good reason that Aspergers is no longer its own diagnosis.
The article is about ASD.
You obviously did not claim autism as a superpower.
Still this “everyone is a bit autistic” stuff is kind of absurd. It diminishes the condition.
> most people that I know, including myself, say that we are "somewhere on the spectrum"
No one says “everyone I know is a bit paraplegic”, because that would be insane. Yet people glibly call themselves autistic as if having geeky hobbies or a job in software is the same as being diagnosable as having an autism spectrum disorder.
> Still this “everyone is a bit autistic” stuff is kind of absurd. It diminishes the condition.
Again nowhere am I saying that.
Maybe I could have worded it much better but I never meant to imply, it happens that like myself a larger portion of the people I hang out with are diagnosed which for me works with just saying "most people" but I can see why that was not clear.
Fine. You said most people you know.
> Couldn't disagree more. The "autism is my super power" movement is borderline offensive to people dealing with severe or low functioning autism.
I doubt those types are saying much of anything. Its more likely their caregivers.
Again the old name for those of us who think its more a super power used to be called Aspergers syndrome. https://en.wikipedia.org/wiki/Asperger_syndrome . And we got folded in to Autism Spectrum Disorder, as did a whole host of other diagnostics.
And we have been found to be more truthful, better at focusing, can hyperfocus, notice more details than NT's, and plenty more. We're only a disease cause we're the minority.
It's not a disease, it's a disability.
As someone with a diagnosis, I would add several sensory issues (for me it's noises, multiple conversations at the same time, stickiness, physical contact, whole categories of food and several others) and several social issues to your list of superpowers.
Seeing it purely as a positive is insultingly reductive.
To be clear: I would not take a cure if it somehow got invented, but it /is/ limiting in a multitude of ways even in the best cases.
I only have so many comments before idiotic rate limiting. But I'll comment here.
So for dis-ease or dis-ability, it doesnt interfere with ease of life. Nor does it materially affect my ability.
> I would add several sensory issues (for me it's noises, multiple conversations at the same time, stickiness, physical contact, whole categories of food and several others) and several social issues to your list of superpowers.
And too true. I have some as you listed as well. However, I also figured out what causes them in me, and how to reduce their effects to nil. In a way, its self-treatment with n=1.
Noise: I dont have a problem with noise per se. However, when multiple people are talking or music with lyrics are on in the background, its incredibly hard for me to process what's spoken along with it.
Weirdly though, when I was principal clarinettist in a symphony, I could easily pick out any instrument by simple concentration. All I know is the noise issue with me is something with vocal processing of over-talking voices.
stickiness: for me, its dirt on my hands. Or chicken/turkey/beef/pork/lamb/goat blood. I do a lot of cooking. I hate those feelings on my skin. But I find that as long as I wash my hands before and after with a good degreasing soap (Dawn), the icky goes away. I can still do the task at speed.
I dont have the physical contact issues for people I'm close with. So, thats not an issue.
Food: theres only a few foods I can't eat, due to vomiting reasons. Tapioca based products are the big one. Aside from that, I eat everything from blue cheese, to cow tongue, offal from beef and birds,ghost peppers, pork brains, hakarl. I like the tastes and sensations that foods have. In a way, I'm wondering if this is also relayed to the supersensitive reject-foods type. Definitely not a disability.
And of course, theres the huge downsides with interpersonal interactions. Took me decades to really piece together and emulate and identify emotional state in others. But the psychologists dont know how to fix this either. Most of them are NTs who it comes naturally. But they want their indefinite sessions to do basically nothing but pay $200/hr.
> Seeing it purely as a positive is insultingly reductive.
Again, there are up and downsides to NT's and ND's.
Neurotypicals are more known for deception and lying. Or they use the term "little white lies". These things slowly stack up in NT conversations until they become huge problems. Sitcoms are based on this. But ND's, well, we are the weird ones. When someone asks "do I look good in this?" And you say "no, it clashes with your skin tone" - you were supposed to know they wanted a yes.
I feel sad that NTs can't properly hyperfocus, and can easily drop out of hyperfocus with low sensory input.
NTs memory is foggy and badly reorders things. Or they misremember and blame others for ill-perceived issues.
There are good and bad. I'm glad I'm ND, likely Aspergers (hence autistic). Most of these problems are ones that can be solved, at least for Aspergers side of things.
> I doubt those types are saying much of anything. Its more likely their caregivers.
It doesn't really matter whose saying it. The point is that autism is not cool or fun for many people. We need a way to distinguish the difference, besides saying high or low functioning.
> We're only a disease cause we're the minority.
WHICH WE ARE WE TALKING ABOUT THEN? IS IT NOT A DISEASE WHEN SOMEONE IS NON-VERBAL? Holy shit. Point, meet case.
I immediately started with 'Aspergers was folded into autism spectrum disorder'.
I dont think they ever should have did that.
If the doctors say that "someone is nonverbal, pisses their pants, and needs spoonfed at 17yr old" is somehow the same as "someone who is a professional engineer who can hyperfocus but misses social cues and says weird stuff" - the doctors are completely wrong.
Those are demonstrably NOT the same thing.
And yes, my Aspergers is a super power. Those abilities (many positive, some negative) have gotten me far.
The diagnostic criteria for "Aspergers" never required above average, or even average intelligence.
If you had visited the Aspergers and autism website support forum "wrong planet" 20 years ago you'd have seen many lower functioning than you people with "aspergers" complaining about aspects of their lives.
So I don't see how "aspergers" is a superpower.
It got folded in because it was recognized that it's just a milder presentation of the same underlying problem.
Then we agree that autism should be comprised of several named and distinct "disorders."
>And we have been found to be more truthful, better at focusing, can hyperfocus, notice more details than NT's, and plenty more. We're only a disease cause we're the minority.
Yeah and this is why Autism shouldn't be treated as a single condition, even if the cause is the same the outcome is meaningfully different than someone who cannot function.
Many with Aspergers take advantage of their strengths (as anyone does) but it is not without its difficulties
I disagree completely, the discourse around RFK and "anti-science people" makes it extraordinarily clear that when most people hear "Autism Spectrum Disorder" they think exclusively of common, mild cases where the person has no serious issues existing in society and frequently benefits from their "disorder". They consider discussion of "curing" autism insulting, and challenge the idea that it's a read detriment at all. They do not for a moment think about the more severe cases that require people to have full time caretakers because they are unable to feed themselves.
I can't read the article because of the paywall, but I assume that it is referring the fact that these two extremes need to be treated completely differently and even discussing ASD is made remarkably difficult because these extremes are the same diagnosis.
I don't think it's safe to draw conclusions about what "most people" think based on the discourse around RFK and his nonsense.
Yeah, that's why I'm drawing conclusions based on what how it's being discussed in real life, social media, this thread, etc.
> common, mild cases where the person has no serious issues existing in society and frequently benefits from their "disorder"
This is not at all a thing. People with some mild neurodivergence sometimes being good at very specific tasks is not even in the same ballpark as "Benefits"
There's no benefit to a brain that struggles in modern society.
>but I assume that it is referring the fact that these two extremes need to be treated completely differently
Except they don't. What is different is the intensity of the treatment. My girlfriend needs patience and a little therapy. Her sister needs intense forever therapy and infinite patience and a system that will allow her to live despite never being able to be a productive member of society.
>They do not for a moment think about the more severe cases that require people to have full time caretakers because they are unable to feed themselves.
They are regularly the parents of exactly those people and are sick and tired of you speaking for them and making their life harder. Those people who need fulltime caretakers can only pay for them through social security benefits, and guess who is trying to change that?
>even discussing ASD is made remarkably difficult because these extremes are the same diagnosis.
The reams of neurodivergent people I have interacted with in my life have never found issues with this, and have regularly been very willing to engage with the nuance of a poorly understood disorder which by definition has no single cause and might be several similar looking diseases because that's what the word disorder means in medical science
The discourse around RFK is that morons with no experience, training, or even ability to read introductory material apparently should shut the fuck up, and let the adults work.
> There's no benefit to a brain that struggles in modern society.
Would you say there’s no benefit to the genes associated with sickle cell anemia? How about homosexuality? Schizophrenia?
The reality is that we cannot reliably predict how genes interact with the environment in the long term. Modern society is more malleable than ever.
The fact that this topic is relevant on a site disproportionately frequented by computing professionals suggests a strictly negative characterization is incomplete even in today’s society.
> Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
In the 1990s we drugged kids (especially young boys) who weren't able to sit still with ADHD medication. Every parent's kid suddenly had ADHD, people would talk about their quirky behavior as "oh its my ADHD".
This generation it's autism, and it's likely over-diagnosed just as much as ADHD. You do it in your own post, attributing a defined, binary, thing as "I am somewhere on the spectrum". If anything, your own post demonstrates the anti-scientific (pop-sci) instagramification of mental illness. You either have some quantity of illness or you don't. You can't just ascribe some quirky, possibly somewhat anti-social, behavior as being on the spectrum. Sadly, this is often used like ADHD self-diagnoses to gain sympathy or social leeway. Much to the disservice of people suffering from the condition.
It comes as no surprise that psychiatry, and medicine in general, is suffering from a massive reproducibility crisis. It's not anti-science to call into question the amount of bunk, p-hacked, corporate funded garbage coming out of even the highest tier of medical grade journals.
Agreed; in short: any monolithic system will have individuals with natural dispositions transverse to that order, those individuals provide resiliance and novelty but also risk driving decoherence and defection. Yay pluralism.
"You do it in your own post, attributing a defined, binary, thing as "I am somewhere on the spectrum"
"You either have some quantity of illness or you don't."
I'm not sure what kind of argument you are making for (or against?) "binary" symptoms. The DSM-5 clearly lays out the spectrum. There is a conglomerate of effects caused by autism, and where you are on "the spectrum" is determined by how many of the symptoms you have, and their severity.
There is nothing wrong with someone claiming "I'm on the spectrum" if you don't know how or what they were diagnosed with. That language is consistent with the DSM. Unless they admitted to self-diagnosing, it seems wrong to assume someone is lying about their own experience.
"You can't just ascribe some quirky, possibly somewhat anti-social, behavior as being on the spectrum"
Quriky, somewhat anti-social behaviour (in your words) essentially is one of the dialogistic criteria. But nobody would be diagnosed with autism for that alone. Just like how autistic folks usually avoid eye contact. That doesn't mean they ALL avoid eye contact, and it also doesn't mean anyone who avoids eye contact is autistic. It's a wholistic diagnosis. One would need to be experiencing SEVERAL of the symptoms to receive an autism diagnosis. IME, the majority on the spectrum are indeed level 1, and high functioning, even to the point others might question if they are really autistic.
If you take issue with people self-diagnosing, I don't think anyone would disagree. But your combativeness in just discussing the topic kind of looks similar to people who refuse to accept that autism is really a thing ("there were no autisms back in my day" kind of thing).
Diagnostic* (somehow accidentally typed dialogistic, which IS a real word).
My OCD would not let me ignore this typo. (Just kidding - I self-diagnosed OCD)
I both agree and disagree with the over-diagnosis claim. Yes, everyone is suddenly autistic, which lessens the meaning or impact of the term. Also, the DSM 5 reclassifies a good portion of human behavior under the umbrella of ASD, so this is in part driven by the diagnostic model itself. We continue to see rising rates of severe autism in children, which are likely attributable to this reclassification as well as better common understanding of the diagnostic criteria. Presumably, just as many adults either qualify now or would have qualified as children.
At the same time, there’s the neurodiversity movement that seeks to destigmatize and depathologize these diagnoses for both high functioning and more profoundly disabled individuals. Just because you don’t conform to the norm - and ASD is heavily defined in relation to deviation from an underspecified norm - does not make you “mentally ill.” So we have autism as an identity additional to a diagnosis, which I think can be really empowering for people, and also cause confusion and frustration for others. It’s a reclaiming of “disability” from the paternalistic and abusive medical and pseudoscientific practitioners that have been harming autistic people for decades.
I also wish you were not being downvoted. You express some common sentiments and I think your comment adds to the conversation.
There's a lot of stuff to unpack in such a discussion, but I only want to add that I see the prevalence of things like autism as a sort of "over correction" to practically all of history. Sure, some kids might relate to it and incorporate it as part of their personality, but 1) I don't think that's as widespread a problem as some people claim, 2) kids do this all the time with various things, and have done forever, and 3) I think that's a small price to pay for society learning about these things and destigmatizing them
> I also wish you were not being downvoted. You express some common sentiments and I think your comment adds to the conversation.
Common or reasonable sentiments or not, the whole "kids these days" overtone is tiring and annoying, and most people - online and in person - don't want to engage with that, because it does not imply a position of good faith.
* * *
> This never happened. We did not overprescribe Ritalin.
I think it is important to stress a difference between "over medicated", "over prescribed", and "over dosed" (often also called over medicated, something I have been guilty of).
An example being my partner, apparently when he was a kid and diagnosed with ADHD he was put on a very high (I am only relaying what I was told) dose that he hated being on. That has caused him now as an adult to be very cautious to go back on the medication.
Where as for myself I was not diagnosed until an adult, was able to actually advocate for myself and I started on the lowest dose possible for all of my medications (also treating Anxiety and Depression). While I do take several medications I would not consider myself over medicated because we have identified that at this point in time all of these medications are actually helpful, but I am very cautious of being on too high of a dose for each of these.
I do think there are likely people that were put on too high of a dose too quickly to expedite treatment, but being on the medication in the first place was not the issue. It doesn't mean that the diagnoses was wrong though.
I think your point could be better made with less vitriolic language, and I also think you get a few things wrong: a bunch of my peers were over-medicated to the point of being senseless during the late 80s and early 90s. These drugs were pushed on kids by many well meaning but exasperated parents whose children - mostly boys - could not sit still and behave in the way demanded of them by school and society. So it's a mixed bag with regard to the intent behind medication, and the effectiveness with which it was applied. Nowadays, if anything it's harder than ever to get amphetamines because of US drug scheduling policies and our patchwork, piecemeal healthcare system.
I just want to say, I wish I could give 100 upvotes, but I'll have to settle for one.
It's definitely the case that there is undue paranoia about stimulants.
One case you only briefly touch on, addiction. Let me elaborate. I have struggled with severe ADHD(largely untreated during childhood, mainting severity into adulthood as a result) for all my life. I've struggled with drug addiction for most of my adult life(mainly cannabis). The amount of hoops addicts are made to jump through to get access to amphetamines is insane. Generally the requirements in my country(Norway) are to deliver weekly clean drug tests for 3 months. In the case of heavy cannabis use, it takes up to 3 months from going cold turkey until tests are negative. So, a 6 month commitment before treatment can even begin. Now, the relationship between ADHD and cannabis is interesting. I know some ADHDers who swear by it as a treatment. These tend to be of the predominantly hyperactive/impulsive type.
For me, it can't really be called a treatment. It actively worsens my condition in terms of executive dysfunction. Although it does improve some of the aspects like hyperactivity and emotional lability and helps make things bearable.
By the time I'm a year into a binge, my life is such a mess that getting myself out of it without meds is completely hopeless. Here I'm talking my apartment being such a mess I'm generally expecting to be woken up by people in biohazard suits any day now, and wondering how the hell I haven't contracted some kinda crazy bacterial disease by now. Cleaning it up is weeks if not months of work even with meds. Without it's inherently impossible. And the cannabis at least numbs me to the horror of it all.
So for 6 months I have to abandon that small comfort and just exist in this hellish life until I can even begin to improve things. Try to imagine how hard that makes going cold turkey in the first place. Not to mention the fact that meds significantly help me manage the addiction in the first place. I've successfully made it through this 6 month purgatory 3 separate times in the last 13 years. I've made more failed attempts than I can count. Wasted most of my 20s hiding from the purgatory inside a bong. I often wonder ehat my life would've been like if the rules weren't so strict. There's no evidence supported medical justification for waiting any longer than about 4 weeks. Out of the bajillion or so failed attempts, I reckon maybe 3/4 made it that far. Go figure.
I'm currently, close to 2 years semi-sober(doing a new moderation based approach to my addiction, very successfully, smoking exactly once every 4 weeks. Bit unrelated to the stimulant thing, it's more about relapse avoidance. But it's worked wonders so far.) and doing better than ever, but I still have a long way to go. And I will fight anyone who sows FUD about amphetamine or methylphenidate. These are wonder drugs. If you want to freak out about psych meds, go read up on neuroleptics. Now there's something truly horrifying. But of course, that only happens to crazy people hidden away in mental wards, so no one cares about them. I've been to those mental wards and I have seen some shit I will never forget. People whose lives were destroyed, reduced to an unbearable living hell for the remainder, by a supposed "treatment". These people are treated like animals. Go talk about that. Shut the fuck up about stimulants and SSRIs already, jesus. And go touch some grass.
> It comes as no surprise that psychiatry, and medicine in general, is suffering from a massive reproducibility crisis.
Psychiatry still hasn't coped with the fact that it spent most of the 20th century taking Freud seriously. More recently, it still hasn't figured out a way to repudiate the Satanic Ritual Abuse panic in the 80s. The people who were involved are literally still working, and have moved on to Facilitated Communication in severe autism, Gender Identity, and are still pushing around the fraud of Multiple Personality Disorder. Literally the same people involved in all of them, and now their children. [edit: forgot about one of the most important, Recovered Memory Syndrome]
There's just no scientific method in most of psychology, it's simply guru-led systemic theories delivered mostly (but often entirely) by a single person who is licensing practitioners. What comes along with that is a complete inability for any of these theories to die. They just eventually become unpopular and unprofitable, and people jump onto the next thing.
The psychopharmacological revolution has complicated this even more, because now there are billions of dollars wrapped up in it. The only advantage to SSRIs and the new generation of knockoffs was that they didn't cause tardive dyskinesia, there was never any statistical evidence that they performed any better than the previous drugs. And in the case of the previous drugs, they weren't ever shown to have much of an effect other than quieting down patients. They were all based on the wackjob theory that people having epileptic seizures suddenly became sane, and were one of the ways of inducing a seizure-like state, along with freezing baths, saline injections, electrocution, etc. All of the pioneers were also enthusiastic lobotomists.
How can we say that these new tactics are medicine or science when the statistics on mental illness keep getting worse?
It's kind of weird how you downplay tardive dyskinesia, as if it was kind of a no big deal, whatever kind of thing. Would you accept having tardive dyskinesia induced by a drug?
Is that really your position?
Your other words seem fine, but that is a standout sentence!
Bad article title. It should be "Autism should be divided into more specific diagnoses, once we have reliable, evidence-based diagnostic criteria."
There's a reason Asperger Syndrome was abandoned as a separate condition and folded into ASD (in DSM-5) -- until then, anyone who wanted the diagnosis could get it, by displaying symptoms popularly associated with the condition. So we had clinical indicators, but no objective biological tests -- still true for most DSM-listed conditions. This led to widespread abuse and uncertainty.
The single label "autism" has many drawbacks, but one important advantage -- it reveals what we know in a scientific sense, which is next to nothing. Eventually neuroscience will change this and identify biological causes for many "mental" conditions. This will end diagnoses based on clinical interviews and replace them with objective biological tests.
I imagine this scene in a future neuroscience clinic:
Patient: "Let me tell you what I think is wrong with me."
Clinician: "Don't bother, we have objective biological tests now -- your narrative would only confuse the process. Remember psychology?"
But it is divided into more specific diagnoses with distinguishing diagnostic criteria, and we call them "profiles". They are related, and thus are placed under the umbrella of ASD, because the DSM-5 is a diagnostic manual and not a full taxonomy of developmental disabilities.
One such profile is pathological demand avoidance (PDA). Another is Asperger Syndrome, which has been reclassified as an ASD profile. They all exhibit the diagnostic criteria for ASD in one or more ways.
Also, I want to point out that calling ASD a "mental condition" doesn't have a scientific basis; it is classified as a developmental disability. These terms matter, whether or not you consider this to be some kind of abuse.
It is called "Autism spectrum disorder"
Disorder by definition means that we do not consider it to have a single cause or issue, and we acknowledge that we don't understand it well enough to give it a single name, cause, or objective diagnostic criteria.
When we know what causes something, or how to strictly and objectively identify it, then we usually call it a disease.
This is well understood by medical professionals, and a normal part of their job, and not confusing for the vast majority of people diagnosed with some disorder or other.
This article is utter trash. As per the usual for the economist
Thanks for that insight. I previously had only a vague notion of why disorder is used. One of the main reasons I don't want to have an official diagnosis is because the word disorder has such a negative connotation. I really don't want any disorders, so if I just ignore it, try not to think about it, maybe it will go away, and then I won't have a disorder.
YES PLEASE.
This actively harms diagnostics and encourages cure-all peddlers.
Definitely has been good for financial benefits and such but... Once someone gets the "autistic" diagnosis all further research stops.
This is an idiotic media talking point not actually reflected in the clinical evidence. Unifying autism diagnosis under the ASD label was not a mistake, for a lot of reasons.
Previously: https://news.ycombinator.com/item?id=45451103
The article does not mention Pathological Demand Avoidance as a form of autism. Everybody avoids chores they don't like, but people with PDA take it an extreme. For somebody to have PDA enough that it becomes a shade of autism the world exists only in the form of I want and I don't Want so much so that it limits the imagination and perceptions of the world.
For example somebody with PDA autism cannot interpret the nonverbal communications of other people because they have already made the immediate decision that they want to be liked by others, so therefore they are. They cannot try new foods because they may not like it if they do try, so therefore they don't like it already. They would rather suffer hours of punishment grounded in their room than accomplish a 2 minute chore, because they already know in advance they would prefer to not do the chore given a choice to not do it.
People with PDA autism often appear to be sociopaths and pathological liars. They are not either of those things, due only to a minor difference in motivation. Sociopaths don't care if somebody else gets hurt so long as they get what they want, while harm to others does impact somebody with PDA in a very normal way. Since they have no capacity for empathy and color every past observance to fit their world definition of saving face it takes a lot of time with a PDA person to see the distinctions between them and a sociopath.
I remember back in the 2000s - 2012ish it used to actually mean something, if someone had autism then they were actually disabled and it was obvious.
90% of the "conversation" around autism today is a bunch of handwavey bullshit. There's no incentive for people to be intellectually honest. It's now a moral hazard because so many people are "attached" to the label and get accommodations out of it. You can pay phony therapists online to just go straight to a diagnosis so you can get accommodations. There are financial and political incentives in diagnosing more people.
People can't have an honest conversation around it either because it's such a charged issue. We either get one side that wants to expand the scope of autism to infinity or the RFK vaccine bullshit
This preprint inspired me greatly: https://www.thetransmitter.org/spectrum/untangling-biologica...
It looks like this article is talking about that exact preprint, but a quick skim didn't reveal any sort of link.
Ever since I first read it, I've been training myself to identify the subtypes. I don't have good names for them, nor do I know how they correspond to the names in the preprint, but I can usually tell them apart. I have indeed seen exactly four.
I would love for there to be more research into the intricacies of each subtype, because I feel that care and accommodation could get a lot more personalized and helpful if there were less of "anything goes / anything could happen" and more specialization to what's most likely to be effective for each particular subtype. As it is, a lot of care programs or individuals supporting them may be specialized to an unknown degree to particular subtypes and not really understand how to become less specialized or even specialize further.
On top of that, I greatly want to understand better the subtypes other than my own, not least because a couple of them I can find very difficult to communicate with because my knowledge and arguments are formatted differently than how they learn. I want to learn how to format my knowledge in a way that's easier for them to understand and more convincing for them.
I'm just very curious and interested and I really hope the idea of autistic subtypes takes off because it absolutely agrees with what I've seen in practice.
The Economist should not be treated as reliable source of information on medical issues.
[edit] To be more specific, this is a lazy take and is about as insightful as saying 'cancer should not be treated as a single condition' which for HN is about as meaningful as saying 'the CPU and the GPU may both contain chips, but they should not be programmed the same.'
and times a hundred, Robert F Kennedy Jr., an absolute con artist with no qualifications of any kind
It should not, but it is because the healthcare system is broken; the education system is broken; and the social system is broken.
So people who have problems get lumped together because these systems are all stripped for parts because of capitalism and religiousity.
It'd be great to have a functional science based medical care but that won't help the children stuck in a hellhole of anti science, antisocial and pathological liars.
What's going on with the brain of any particular person is a point in a very high dimension space. What doctors call conditions are regions in that space. The definition of those regions has something to do with understanding and helping the humans and their families, but also something to do with the doctors making money. In the US Healthcare system nothing can be paid for unless it is in service of treating a "condition". Slightly odd that an article in The Economist doesn't mention this.
Related: doctors will refuse to test you to see if what you're suffering from is a particular condition unless that condition actually has a known treatment.
We test for plenty of incurable diseases.
Who was?
Autism was split into autism and Asperger’s.
But calling people with social challenges “Assburgers,” I mean, wow. Just wow.
> Asperger’s
This term has a complicated history so people use "high-functioning" now. Many refer to Hans Asperger as a Nazi eugenicist. Reasonably, I'd say.
https://en.wikipedia.org/wiki/Hans_Asperger#Children_sent_to...
https://en.wikipedia.org/wiki/Am_Spiegelgrund_clinic#Experim...
> Just as the physician must often make painful incisions during the treatment of individuals, we must also make incisions in the national body, out of a sense of responsibility: we must make sure that those patients who would pass on their diseases to distant generations, to the detriment of the individual and of the Volk, are prevented from passing on their diseased hereditary material
Same stuff with lisp being the name of a condition that people with lisps can’t pronounce. They did it on purpose and they know what they did.
The same folks who cause all the Mandela effects did this cus they thought it’s funny. We are all job in his biblical story.
I have some sort of it and I built an AI tool to help myself to get emotional intelligence.
https://getpartner.ai
We don't have any geniuses or stupid people anymore -- just autistic and ADHD.
Are you shy, slightly socially awkward and very intelligent? You must be "on the spectrum".
The most intelligent, knowledgeable, socially tuned and socially integrated people I see online claim to be autistic. I swear it is absolute nonsense.
> We don't have any geniuses or stupid people anymore
What planet are you talking about, because that does not align with my daily experiences on Earth?
I am an autist in a family filled with autists - some of whom I think you would CLEARLY recognize as autistic, but some of whom you'd have this "absolute nonsense" reaction to. I say that because that is the reaction I had myself, I was very skeptical of this whole thing until I came to learn a lot about it after my daughter was diagnosed.
I don't think it's mainstream science, but monotropism is a theory of attention which has been theorized as the central underlying feature of autism and you might be interested in looking it up. It makes a lot of sense to me. I think the more mainstream way of talking about it is bottom up processing (details, the trees rather than the forest) vs top down processing (holistic, the forest rather than the trees).
Either way - you can get a very diverse set of results depending on how which sorts of things the individual's attention gets commandeered by, and by how much. Some people can't stop paying attention to individual sounds or individual tactile sensations or any other individual sensation, some people have difficulty putting sentences together despite having an excellent grasp of each word, some get stuck trying to process specific individual facial expressions and fail to grasp the actual social dynamics going on around them - it goes on and on.
Some have special interests (deep attention to a specific topic) that are extremely economically profitable (programming) or simply socially mainstream (music or movies) which give them social cachet. Some have special interests that mark them as weird and socially outcast (collecting bugs, memorizing bus routes). Some are very intelligent and are able to make up for a lot of difficulties with effort. Some have a great focus on social dynamics and come off quite charming. All of this can add up to very different experiences though life, very different sets of difficulties, and that of course can compound.
I think you should expect there to be a very wide variety of autistic people, if there is an underlying similarity in processing things. There is a very wide variety of non-autistic people, too. Heck, I think there's a wide variety of people with only one hand, just because Jim Abbott was a major league baseball pitcher doesn't mean he actually had two hands, and just because Muggsy Bogues was a great NBA player doesn't mean he wasn't short.
What's your thesis here? I'm getting "shy, slightly socially awkward and very intelligent is not what autism is," and "people who are intelligent, knowledgeable, socially tuned and socially integrated claiming to be autistic must obviously be lying, autistics could not possibly be those things."
These seem to contradict each other?
Just because you don't understand something doesn't mean it's real. Spend a few hours to read about these topics and educate yourself.
I think a lot of it is peverse incentives.
There are social (cut me some slack, I'm autistic) and in socialized medicine systems, financial benefits to an autism diagnosis. So yeah, why wouldn't you claim to be autistic, what's the downside?
Add to that Gen-Z, socially awkward, isolated and poisoned by their obessive phone addictions frantically searching the internet "Why do I feel socially awkward?" and a million "Take out autism test!" links later get their answer. Yes indeed, they have autism, the test proved it.
Autism is much more than social awkwardness, and I'm sure you're not intending to be, but this post is extremely dehumanizing and insulting to people dealing with the issues that an ASD diagnosis typically presents with. and, by the way, many high functioning individuals have to fight for their entire lives to even get a diagnosis, so I'm not sure where you're getting your information from that these are being "handed out like candy" or whatever. I can point you to a variety of sources online if you're interested in learning what this actually is.
With respect, I am not insulting people dealing with the issues of ASD diagnosis. Autism is real and can be debilitating.
The comment I replied to said "...claim to be autistic" and that is what I am refering to.
I am calling out self-diagnosing over vague feelings of "feeling different" and on the basis of online tests.
Everyone who needs an autism diagnosis should get one. Not everyone who wants one.
Unfortunate you have been downvoted because this is definitely the case. I am not actually sure that anyone disagrees with this, UK governments on both the left and right have identified this.
Ten years ago in the UK getting disability money for autism meant being non-verbal, requires extensive in-home care, unable to live independently, etc. Whatever you think about the definitions, it is very clearly not the same now and refers exclusively to some kind of social disorder. Rates of the former haven't changed significantly, rates of the latter are exploding.
When I say this, I don't think people understand the scale here: in some regions of the UK as much 40% of primary-school age children are disabled. Spending in this area is projected to bankrupt many local governments...to be clear, these are economic units with multi-billion pound budgets and responsibility for basic societal functions. It is difficult to understate the extent to which this is an issue.
I don't necessarily think people who engage in the over-diagnosis are ill-meaning: individuals are being given money to do this, psychologists are raking it in hand over fist, and the UK is now a place with a very effective disability lobby with lots of incentives to keep it all going. But it remains true despite all of this that it cannot continue.
Just imo, the damage done already is close to irretrievable. The situation in UK schools is dire: teachers are frequently attacked physically (in some regions in the UK, this is so frequent and so little support is provided because of the inability to exclude "disabled" children that there are frequent staff walkouts), typical classes have 5-6 ASD assistants at all times, behaviour is so poor that other children are unable to learn, parenting of these children is non-existent because parents gain financially and the incentives to blame a medical condition rather than poor parenting are clear, etc. If you consider other trends, it is dire...we are talking about most of the workforce entrants coming out: many unable to speak English, can't perform basic tasks without support, zero impulse control, usually claiming benefits straight out of secondary...it is so bleak.
I’ve been using “autism that I care about” because a large number of people I encounter are on the spectrum / neurodivergent (hobbies and work I suppose) that require very different interventions and accommodations that people with whatever you call significantly affected people with autism are called (eg, Rain Man, etc).
Not that people low on the spectrum aren’t important, they are, but that just using standard interaction tactics that I would with non-spectrum people works well enough.
So trying to save time that someone doesn’t need to interrupt the conversation to say they are on the spectrum and can only eat smooth foods or whatever.