62 ms·

“Autism is a spectrum” doesn’t mean what you think (2019)

336 points by stared 5y ago

rightbyte 5y ago
She is missing the point of "a gradient". I.e. to know how much help or space someone needs without going into 7 dimensions of traits. Everyone can't be psychiatrists ...
- mannykannot 5y ago
  I see nothing here to suggest that the author is missing the point of “a gradient”; on the contrary, she knows what it is, that it is not what is meant by “spectrum” here, and argues persuasively that mistaking the latter for the former causes misunderstanding. Here, she is giving an example of how this can happen: “My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile. “”That means I am less functional than 99% of people. Does that seem mild to you?” I asked her. “But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely.“
  - _y5hn 5y ago
    A typical spectrum is the exact same thing as gradients of frequencies. The difference is just in interpretation and actionable mitigations. You can operate on both levels of such a model, for different purposes and effects.
    - mannykannot 5y ago
      This is not a typical spectrum in the sense you describe. As far as I know, There is no plausible model in which the various categories of the spectrum are explicable as different values of a single continuous variable. Attempting to apply this model seems to be part of the problem.
      - _y5hn 5y ago
        You can say everyone is unique (unique categories), but you can also say everybody is human (one category). Being gradients/spectrum _is_ the model. All models about life will be flawed, unprecise and pretty shallow. It's important to be aware of and avoid misuse and misapplications of such models. This doesn't mean you can never use any model. They are tools, and we must have awareness of their outcomes and shortcomings. Even simple models can have very complex outcomes in a complex world, or when dealing with individuals (singletons) vs populations (accumulations).
        mannykannot 5y ago
        By writing “gradients/spectrum” you are begging the question here, assuming that the spectrum is a categorical variable with an underlying gradient, analogously to the color spectrum’s basis in frequency. What you have not said, so far, is what psychological variable you regard as analogous to frequency.
        _y5hn 5y ago
        Sure. By going into the perception part of frequency, or even psychology, we go more into the subjective. We can start to see colors, or types/groups of people's minds. This can help with understanding differences, in groups, types or categories. It's all tools, and such categorization might help with differences that people struggle with. For example, more specific struggles than autism/non-autism alone. But then again, you can also find commonalities even on the individual level, that might help universally. So it's all multiple models and some of them operating in multiple dimensions. Inventing new models doesn't automatically discard other models. My point is simply, instead of looking at it as either this OR that, the models are that model AND that model too, while trying to recognize strength and weaknesses of our biases. When confronted with new information, we tend to discard old information, as if it's all unapplicable or not politically correct. That's perhaps psychology too :) Perhaps, linked to the competitive nature of humans.
        mannykannot 5y ago
  - emodendroket 5y ago
    The argument is clear but not entirely persuasive. There are a lot of people on the spectrum who have no hope of expressing their thoughts in an essay like this or ever living independently. Whether we call it “mild” or “high-functioning” or some other choice along the euphemism treadmill, it does not change the fact that these people have very different prospects.
    - mannykannot 5y ago
      I may have misunderstood your point here, but I do not think the author intended to suggest that her situation was in any way a worst case, or to minimize the difficulties faced by others. On the other hand, I do think she was pointing out that terms like high or low functioning are not categories of the spectrum, and nor are they the sort of issue it is intended to differentiate between.
      - emodendroket 5y ago
        I took the point of the piece to be that thinking about it in terms of "best" or "worst" cases was itself wrongheaded, and that there's no meaningful distinction you could make between "high" or "low" function. Assuming that's what she meant, I don't agree.
        mannykannot 5y ago
        I feel that it is implicit in the passage I quoted that the author sees such a distinction, but that her doctor was mistaken in assuming that it is determined by the spectrum diagnosis.
  - blitzar 5y ago
    > ”That means I am less functional than 99% of people. Does that seem mild to you?” I asked her. If you are less functional than 99% of people, but more functional than 99% of autistic people, one might consider that mild autism yes.
    - deleted 5y ago
      [deleted]
    - mannykannot 5y ago
      Arguably one might, but one would be being uselessly tendentious in so doing.
test0account 5y ago
I don't mind the assumptions. I don't think we are unfairly characterized. What we are is unfairly treated most of the time.
joenathanone 5y ago
I work in this field and I dislike takes like this, where individuals think they can speak for a whole group. Also this “Having sensory processing issues doesn’t make you “a little autistic.” It makes you someone with sensory processing problems. Autistic people will understand your struggles and welcome you as a fellow neurodivergent cousin, but that’s it. But in order for a person to be considered autistic, they must have difficulty in multiple categories spanning the spectrum.” If someone says that they are ‘a little autistic’ they aren’t saying that they ‘are autistic’, they are just attempting to emphasize. Don’t destroy that by getting into a semantic debate.
- manwe150 5y ago
  I assume ‘empathize’ is meant there?
- whalesalad 5y ago
  Autism is still wildly misunderstood. It’s a big label on a very very big bag of diverse symptoms. I don’t know how any reasonable scientist could gatekeep something so amorphous and loosely defined. You can take a child to 4 different doctors and they will all diagnose “autism” differently. It stands to reason no one knows the truth. We are all just making this up as we go along.
  - 323 5y ago
    Maybe they should split it into more specific categories. Like we don't just say "you have heart disease".
    - netizen-936824 5y ago
      Personally, I like the idea of reclassifying things based on biochemical mechanism. Not that this is any small undertaking, as we need to understand the mechanism that leads to the symptom(s) and develop some sort of reliable test for them. This goes for all psychological issues though, beyond just ASD
swayvil 5y ago
I suspect that autism is a special shape of attention (and by attention I mean what you direct when you pay attention, that which gets jerked around when you are distracted and what you concentrate when you concentrate). Call it "habitually concentrated". We study that kind of stuff in the meditation scene.
Khelavaster 5y ago
Someone wearing red is absolutely "a little" on the rainbow spectrum compared to wearing brown, white, silver, or black...
kstenerud 5y ago
Another shitty development is how "mild" autism has become a trendy status symbol. Psychiatrists are now inundated with so many diagnosis requests from neurotypicals that actually autistic people such as my wife and I cannot get the official diagnoses we need for government programs, NGO memberships, school and workplace accommodations, etc. There are now literally years-long waits to even get an appointment! Autistic people now have to add the preface "actually autistic" to hopefully get some understanding.
- globular-toast 5y ago
  This happened with gluten intolerance although seems to have had the positive effect of raising the profile of actual gluten intolerance (like coeliac disease) and vastly increased the availability of gluten free products. I wonder if there could be a similar upside for people with "actual autism".
  - thathndude 5y ago
    I think we are seeing that effect with regards to mental health and autism. It seems to me that there is at least a greater understanding. Growing up, I was likely right on the bubble of being diagnosed. Unfortunately, instead I was just labeled a bad kid. Now I have a child with an official diagnosis, and I see a lot of the traits from my childhood, and things that I struggled with and her, just magnified. I think if I were to go through the school system now, someone probably would have at least suggested that I get tested. Rather than berating me day after day and labeling me a bad kid
  - TedDoesntTalk 5y ago
    Yeah, I used to laugh at the gluten intolerance epidemic. Then as an experiment I cut it from my diet. I was not at all intolerant, I just wanted to try it. I could not believe the difference. For example, I never realized that some foods made me tired. Now when I eat breads or pastas, I notice i am tired afterwards (not immediately but after a time). Very strange.
    - 5y ago
globular-toast 5y ago
This is interesting to me as the author is definitely right that people use the word "spectrum" wrong. It has come to mean a gradient rather than a spectrum. But that's natural language for you. There's not much use fighting it. I do think that when people talk about being "on the spectrum" etc, it is well understood what they mean. I'm sure everyone on HN knows at least one person who is "a bit autistic" and maybe even considers themselves to be. We all know what it means. It might be the wrong words, technically, but we do seem to be communicating the right thing.
- jdowner 5y ago
  The reason that some autistic people get upset by that usage is that is diminishes how they experience life. It's like saying, 'everyone is a little black'. There is a big differences between having the genes of a black ancestor in your family tree, and experiencing life as a black person. So, to autistic people, you are not communicating the right thing.
  - nzmsv 5y ago
    But, to play devil's advocate, isn't this exactly what we should want, long term? I think the end goal is for Black and autistic people to be thought of as people first and foremost, and their differences would take a back seat. This is the only way we can be one big happy family. Wouldn't the best way to accomplish this be for the rest to realize that they actually have something in common with the marginalized groups? Imagine a white supremacist who learns they had a Black ancestor. That would transform their whole world view. Same with autism: neurotypical people being able to relate to quirks that cause social exclusion isn't something to shut down. We should be celebrating the normalization of these things because that is how they stop being markers of the "other". Sometimes I wonder what the people who are up in arms about being "not properly" Black, autistic, etc. have as their end game. Perpetual exclusion of the marginalized groups for sympathy points? I think many would gladly trade those points for greater inclusion.
    - SamoyedFurFluff 5y ago
monetus 5y ago
Tangential, but this audio book about the experience of a young autistic Japanese has been useful to me in more ways than one. The reason why I jump (1) https://m.youtube.com/watch?v=eZe8_60zZtg https://m.youtube.com/watch?v=eZe8_60zZtg
verisimi 5y ago
I find Dr Moulden's explanations of autism excellent - a type of ischemia (stroke).
- alvarlagerlof 5y ago
  How is that supposed to make sense?
  - verisimi 5y ago
    I'm not clear on your question. The point is that autism could be the consequence of damage to nerve cells. When given to an adult, a stroke may cause physical and mental issues. The same would be the case for a child, but (especially for young children) the symptoms would appear differently.
deltahotel 5y ago
many thanks for this article. it helps me understand my son better and react better when people ask me about his autism level.
VampireWillow 5y ago
a) I've never heard anyone say "we're all a little autistic". I think by and large people see autism as a spectrum that you can be on or not. b) Her idea of how autism is diagnosed is wildly optimistic. It can work for self-diagnosis, ie "no diagnosis", but every psychologist and psychiatrist has a different idea of how to diagnose it. If you don't present repetitive movements, it will likely be very difficult to get a diagnosis. One of the problems is how the DSM works. To vulgarize, it's a tool to diagnose dysfunctional abnormality. But atypical doesn't mean dysfunctional in the same way as for neurotypical people. And "normal" changes based on culture and context, the very concepts used to describe symptoms will change over time. I think it's easier for individuals to recognize that they are neurologically atypical, but that's simply not a diagnosis just yet, so they can be misdiagnosed a lot. And there are fads in psychiatry that follow popular culture somewhat, so if yesterday's ADHD is today's autism, the goalposts are moving. So hey, maybe trying to put a single label on such a complicated spectrum will always be a problem, and we should provide help and resources to people who need it without trying to boil things down to one word.
mekkkkkk 5y ago
Isn't this caused by a general oversimplification of autism to mean "difficulty handling social situations"? I feel that autism is being thrown around as a description of this specific, limited set of traits that do not align with its formal definition. And as with everything, if some word is being used for some thing other than it's original definition, it will start to lose meaning (or gain meaning depending on how you look at it).
- adeelk93 5y ago
  Interesting point. 100 years ago “idiot” and “mental retardation” were medical diagnoses. 100 years from now, both the evolution of language and the advancement of medicine may similarly antiquate the term “autism.” Maybe this is a perpetual cycle when it comes to mental health terminology.
  - gruez 5y ago
    >Maybe this is a perpetual cycle when it comes to mental health terminology. yes, the euphemism treadmill. https://englishcowpath.blogspot.com/2011/06/euphemism-treadmill-replacing-r-word.html https://englishcowpath.blogspot.com/2011/06/euphemism-treadm...
    - danuker 5y ago
      Reminds me of George Carlin. Warning: politically incorrect content ahead. https://www.youtube.com/watch?v=mUvdXxhLPa8 https://www.youtube.com/watch?v=mUvdXxhLPa8
  - astura 5y ago
    >Interesting point. 100 years ago “idiot” and “mental retardation” were medical diagnoses. "Mental retardation" was the proper and polite lay term in my lifetime. It was only in 2010 that government agencies started removing the word "retardation" from their names. (See: Rosa's Law)
lr4444lr 5y ago
The problem really is that many or most positive autism diagnoses do not come with medically testable symptoms, much like depression or anxiety. And it really hurts the truly intractable, very clinically observable cases to allow for this definition creep IMHO, putting a threshold of points on some psych survey, no matter how well normalized, and simply medicalizing people. I am not even convinced your typical aspie programmer with the high vocabulary who's bad with girls even has the same underlying medical problem as the mute kid who rocks in the corner in fetal position and didn't learn to use the potty until he was 6. Some of these kids for example are improved dramatically when they get on immunomodulating drugs. On others it has no effect. The way some of the "advocates" speak with such cocksure certainty about what is and isn't only hurts the larger cause.
- guerrilla 5y ago
  > do not come with medically testable symptoms Not really true where I am. You have to go through all kinds of tests and be tested for other things (to make sure you're not those.) I suspect it's the same everywhere.
  - watwut 5y ago
    The other issue with Sheldon is that Sheldon is actually abusive guy and his friends are actually enablers. With best friend being mix of enabler and victim.
  - netizen-936824 5y ago
    Where are you located and what, precisely, do these medical tests entail? What biochemical mechanisms do they look at for accurate diagnoses? From my observation of psychological testing and diagnosis on the research side in the US, its a shit show. Most of it is self reporting and questionnaires which don't actually tell us anything about underlying mechanisms. Its just a bunch of symptom check boxes.
StephenJGL 5y ago
The "along" the spectrum part that most latch on to subconsciously is related to spectrums being a visual measure of energy level. That part does increase along the spectrum. That being said I think her interpretation is much more useful for the actual subject matter and important for people to keep in mind. People with actual diversity will often appear high and low functioning in various ways. It's important to understand that dynamic.
fallingfrog 5y ago
I have diagnosed adhd and I’m always struck by how much overlap there is between the way autistic and adhd symptoms are described. I definitely identify with a lot of the traits of person 1. For me, a lot of my issues stem from my being unable to direct my attention towards anything that my brain designates as boring, and away from anything I feel to be exciting. I also naturally drop out of the real world into my own head where there’s a constant movie reel going on of memories, songs, hypothetical situations, whatever. I’ve sometimes been zoning out in my own world and suddenly realized that one of my friends was standing in front of me, waving their arms to get my attention. My eyes were open but I didn’t see them. I tend to miss pieces of conversations and lose touch with people and forget to do things because of these issues. So, I dunno, anyways there’s a lot of overlap. But I’m a pretty good coder because I visualize the data and the relationships between the data, and figure out how it needs to be transformed. And the only reason I have a career is that I became obsessed with programming as a teenager. So, the neurodiversity giveth and it taketh away.
- Royi 5y ago
  Amy Klin has a nice model of Autism (At least the the non harsh cases) which I interpret as the brain at early age (0-18 months) can't focus. So by this theory ADHD and Autism might be seen as two sided coin.
emodendroket 5y ago
I would say this is because the experience of someone with “high-functioning,” or whatever euphemism we prefer now, autism is utterly different than that of someone with nonverbal autism (which is often comorbid with profound mental retardation). So different that they may as well be different conditions. It is pretty natural for laypeople to come to the understanding lamented here, that it goes from “a little” to “a lot,” if they’re told that people who present this differently are both autistic. In fact I think many autistic community disputes are people talking past each other because of this difference. I guess they must have had a good reason, but eliminating them Asperger’s diagnosis would seem to me to just exacerbate the problem.
- mpyne 5y ago
  > I would say this is because the experience of someone with “high-functioning,” or whatever euphemism we prefer now, autism is utterly different than that of someone with nonverbal autism (which is often comorbid with profound mental retardation). So different that they may as well be different conditions. I've definitely seen this as a challenge in describing two of my boys, who both have autism that additionally presents with being nearly non-verbal. You say to someone that they have autism, and in their mind they're thinking 'oh, like Sheldon'. But it's as you say, it's not nearly the same. Sheldon is closer to NT than he is to my boys.
psychoslave 5y ago
>When people discuss colours, they don’t talk about how “far along” the spectrum a colour is. They don’t say “my walls are on the high end of the spectrum” or “I look best in colours that are on the low end of the spectrum.” Of course they don't, people all know that color is a complex mix depending on what light is projected on the wall, what material constitutes the wall (glass?), and so what it will throw back, as well as the physiological condition of who look at it (color blind), as well as psychosocial framing (are you the hidden child of Sapir&Whorf and some Inuit engendered during a fifty shades of white party who just ate some psychedelic mushroom?). Or maybe most of them don't, obviously don't read HN, and will look at you strangely if you start to reference any of these things, or at best will ask for some explanations. Just like when you talk about autism spectrum. Merry Christmas to everybody.
armchairhacker 5y ago
autism (and ADHD) are extremely broad diagnoses. If I hear someone has autism, the only thing I can assume is that their authentic personality is "not normal". And even then they could be so good at masking that nobody can tell the difference.
kloch 5y ago
> Red is not “more blue” than blue is. Red is not “more spectrum” than blue is. I get what they are saying re: autism but this is an incorrect analogy. If you measure wavelength then red is quantitatively more than blue. If you measure frequency then red is less than blue. Where does this response put me on the spectrum?
- the_biot 5y ago
  You take a detail from a sentence and complain about the accuracy of that detail while deliberately missing the actual point. Your place on the spectrum is: internet commenter
stared 5y ago
OP here, autistic, not the author. I like how this post fights with "scalar fallacy" (https://news.ycombinator.com/item?id=8132525 https://news.ycombinator.com/item?id=8132525, http://observationalepidemiology.blogspot.com/2011/01/scalar-fallacy.html http://observationalepidemiology.blogspot.com/2011/01/scalar...), prevalent in popular psychology. My small nitpicks: 1. IMHO, the gradient (from "a bit autistic" to "highly autistic") makes sense - as long as we treat it as the first principal component of a multidimensional process. I know many people who learned that they are autistic in their 30s, as on ALL axes, their symptoms were relatively mild (especially women, who are vastly underdiagnosed). After realizing they are autistic, they often cried, explaining decades of their life and why they always felt different. 2. While I understand where "Don't assume anything about an autistic person." comes from, I disagree. If we take it literally, the word "autistic" makes no sense (as it is not related to anything). Sure, stereotypes are both inaccurate and harmful + there is great neurodiversity among autistic people - "If you've met one individual with autism, you've met one individual with autism". The best antidote is Bayesian thinking - having reasonably wide priors and modifying the posterior with each measurement.
- lowdose 5y ago
  I still don’t get why Asperger is seen as a subgroup of Autism.
  - stared 5y ago
    It's not. Now it is not considered neither a separate unit nor a subset of autism. (As there is no meaningful distinction between Asperger Syndrome and Autism without cognitive impairment.)
    - denton-scratch 5y ago
      I didn't understand that - "not a separate unit". What is the relation between Asperger's and Autism?
      - emodendroket 5y ago
dsizzle 5y ago
> Don’t assume anything about an autistic person. But yet the author describes herself as an "autist," so presumably the author does believe we can make some reasonable assumptions about what being autistic means -- what would be the point of using that label otherwise? I think the point here is that some of one's assumptions will be wrong and that you should flexibly adapt rather than stick with your initial assumptions? I would agree with that.
psyc 5y ago
As someone on the spectrum myself (in a family that produced 2 others, as well) I still don't really understand what rationally makes all of it "autism". The OP has a section on what we have in common, but it didn't answer my question. Is it a scientific or medical thing? A root cause? Or is it the type of situation where 100 years from now they'll look back and laugh at our archaic psychiatry.
pxc 5y ago
The 'spectrum' has always been an outrageously bad metaphor (with autism and elsewhere in psychology), and this article's approach to 'correcting' that by further extending the metaphor just perpetuates another (even more convoluted and ridiculous) iteration of the confusion. The use of the color spectrum is especially unhelpful, since the qualitative features of the color spectrum are totally unrelated to what makes it a spectrum, and so the 'distinction' the article tries to draw between a spectrum and a gradient is totally specious. What makes the color spectrum a spectrum is precisely that it's formed by variation along a single dimension (wavelength or frequency, whatever)— the exact structure the article describes as belonging to a gradient as 'opposed' to a spectrum. The diagrams with parts of the color spectrum blacked out are pure cringe. Why are you making this broken, disanalogous metaphor worse instead of throwing it away?? It's not hard to describe the actual structure of what are (inaptly) called 'spectrum disorders' in contemporary psychology. They are disorders characterized by clusters of related traits, behaviors, and experiences which (variously in terms of severity, frequency, intensity, or something) can each vary in degree. Please stop trying to 'fix' the spectrum metaphor. Just kill it.
- drewcoo 5y ago
  Spectrum is just imagery for a continuum, which autism is. Would you prefer diapason[1], as in the full range of a thing's sound? [1] Through bad spelling (and not synesthesia) I typed "diapasm" first, but it seemed wrong. Turns out it's smelly and not soundy.
  - pxc 5y ago
    Imo, 'continuum' still fails to clearly connote the characteristic of having multiple dimensions of variation rather than just one, even though in some contexts (like in the phrase 'space-time continuum') it is used to name something more structurally analogous to 'spectrum disorders' than spectrums.
  - maximus-decimus 5y ago
    The whole article is about how it's not a continuum but a set of discrete unrelated traits.
ok_dad 5y ago
My opinion as an autistic person is the more people who think they’re autistic the better, it’ll normalize it and we’ll all have better lives. Look at the old chestnut: gluten. Now, because everyone thinks they have a gluten allergy, people who actually have them can eat so much more good food. That’s my hot take for today.
- WillPostForFood 5y ago
  My hot take: a bunch of shitty gluten free food products have displaced better, cheaper, quality food. The people who think they are gluten intolerant are worse off, the people who are gluten tolerant are worse off, and the .5% of actual celiac sufferers are better off.
  - caslon 5y ago
    Aside from the pandemic years, which are outliers, food has been consistently getting drastically cheaper for decades: https://www.ers.usda.gov/data-products/food-expenditure-series/ https://www.ers.usda.gov/data-products/food-expenditure-seri...
    - danuker 5y ago
      What actual spreadsheet are you looking at? "Constant dollar food and alcohol expenditures, with taxes and tips, for all purchasers"? Because expenditure grew. Look at the FAO food price index, and you see it only decreased since 2010-ish, but on average since 1961 prices grew to roughly match inflation. https://www.fao.org/fileadmin/templates/worldfood/images/home_graph_3_dec265.jpg https://www.fao.org/fileadmin/templates/worldfood/images/hom... https://www.fao.org/worldfoodsituation/foodpricesindex/en/ https://www.fao.org/worldfoodsituation/foodpricesindex/en/
  - alisonkisk 5y ago
    Can you give one example?
  - emodendroket 5y ago
    Nobody forces you to buy the gluten-free pasta or whatever, so I can't see how things are worse for the people who neither have nor believe themselves to have Celiac disease.
arendtio 5y ago
I am not a physicist, but I am wondering if light is a good example to explain a spectrum. My primary concern is, that light indeed has a primary order (wave length) and composition of wave lengths isn't being talked about here. While thinking about an alternative example, I came across sound. Frequency also plays a role, but here the composition of different frequencies is important to create melodies. The presents of different frequencies could be the equivalent of a factor being strong or weak. What do you think, do you have other ideas/examples/thoughts?
epgui 5y ago
Totally tangential to the main point, but is no-one going to comment on the fact that the colour spectrum actually does in fact go from less-something to more-something? It's a spectrum of light frequency. The colour labels, like "blue" or "red" are a psycho-cultural construct that are in large part shaped by the cone receptors in our eyes, but it's still a spectrum of light frequency.
- orlp 5y ago
  Tell me, where does magenta lie on this proposed light frequency spectrum? What about black, or white? Brown? Is the dress black and blue or white and gold? There's much more to colour perception than just light frequency + psycho-cultural constructs.
  - danuker 5y ago
    Even the color spectrum depicted in the article misses magenta, due to it being a color made of two frequencies, not just one.
  - epgui 5y ago
    Magenta, black, white and brown are all completely explainable with the light spectrum, photoreceptors and psychocultural constructs. Nobody ever claimed that every possible colour perception needed to correspond to a single wavelength. Rather, every possible colour can be constructed from a combination of wavelengths.
    - alanbernstein 5y ago
      The color spectrum is an apt comparison. Yes, a single pure hue lies on a simple one dimensional wavelength scale. But a color sensed by your eyes is the result of different intensities on three different receptor types, making the perceptual space more or less three dimensional. The color emitted by an object is even more complicated, with an intensity for each visible wavelength (to a first order approximation). Maybe the comparison should have been more explicit about how the one dimensional color spectrum is a drastically simplified representation of color physics, even though it already includes qualitatively distinct colors on a simple scale. On the other hand, while color has a lot of nuance to it, the total light energy emitted from a source might be a much simpler, totally scalar way to characterize light sources. If you squint hard, you can think of the autism spectrum concept as closer to intensity than to color.
bschne 5y ago
Wouldn't things that are some combination of continuous variables be called a "space", and not a "spectrum", in the common usage of those terms? To use the color example in this post, we for instance talk about the RGB or CMYK color space if we mean to say that a color is a combination of those primary colors. Additionally, there was an ACX post a while back [1] talking about how to model psychiatric conditions (the author of which is a psychiatrist) which did talk about spectrum meaning that it is along a continuous axis of severity instead of being something you either have or don't. While it didn't talk about separate symptoms, I'd venture a guess that they are usually reasonably correlated if something is assigned it's own diagnosis, and in many cases it may be more meaningful to reduce dimensionality to a 1D spectrum instead of looking at every variable in isolation? 1. https://astralcodexten.substack.com/p/ontology-of-psychiatric-conditions https://astralcodexten.substack.com/p/ontology-of-psychiatri...
- stared 5y ago
  In general, spectrum is an infinitely-dimensional vector space. For each frequency, you get a value. Using "spectrum" for a "scalar" is a misnomer.
glacials 5y ago
I was diagnosed over a year ago and have yet to "come out" for fear of the exact things the author describes ("but you don't seem autistic", "yeah we're all a little like that", etc.). It's hard to understand what someone struggles with when they've spent their whole lives being trained to hide it. Imagine having tremendous back pain since birth, so that multiple times a day you need to lie down for an hour. You tell people about it and they just say "you don't look like you're in pain", or "yeah everyone has back pain", and they imagine you weak for being so affected by it. As a child you were raised that it's taboo to manage your back pain, so you often have to make up excuses to go secretly lie down. You even believe yourself that you are just a failure for needing to do this when everyone else can soldier on. You have to turn down hikes, trips, even relationships; if a friend invites you over you need to make sure there's an exit strategy, or at least a place you can secretly take a break if you have a spike. This is what my life is like. I have been trained to look like I'm not in pain -- to hide my shutdowns and meltdowns and hypersensitivities, through willpower or through physically removing myself. It affects my work, my relationships, and my daily life, but the worst part is just the pain itself.
- stepbeek 5y ago
  I’m sorry this has happened to you. I’ve had a chronic sickness for three years now and whenever I’m impacted by it I’m met with polite confusion. “Oh, isn’t that over?” I can’t imagine what a lifetime would be like.
- neal_jones 5y ago
  Yea, I pretty excited when I found out because it provided answers and tools, but mentioning it to anyone did not result in similar excitement, instead some took it almost like an insult to them. Didn’t take long before I stopped talking about it.
- sangnoir 5y ago
  > "you don't look like you're in pain" You don't have to imagine this - it happens a lot today. A large number of painful gynecological procedures are done with no pain management besides the doctor saying "This might pinch a little".
kazinator 5y ago
The main value of this good article to someone who isn't a complete idiot is raising awareness of an issue: that there are (supposedly) people out there who think that the autism spectrum is just an intensity scale where the "low end" is mild. Watch out for this and gently guide toward a better understanding.
champagnois 5y ago
I have lived a hard life, but I acknowledge no one cares about my hardships and they care even less about my identity. Healthy, functional people are just looking for ways to get further ahead in life. People are transactional and do not have time for one's long and detailed explanation of a self definition unless their time is rewarded in some way. Happy holidays.
- _aphw 5y ago
  Very ominous but that's not true. There are plenty of healthy, functional kind individuals who are interested in people of all kinds. Photographers, good journalists... and people who simply are more empathetic to the life circumstances of someone. Furthermore, if someone is interesting, for the majority of people there is a natural curiosity being piqued to learn more about that person. Nothing necessarily transactional.
  - champagnois 5y ago
    Photographers and journalists are people who's time is rewarded with money as compensation, as well as fame and status in some cases. This follows in line with the claim -- >>>"People are transactional and do not have time for one's long and detailed explanation of a self definition unless their time is rewarded in some way." People who are just empathetic or curious, sure. I will not deny those scenarios exist.
    - gallegojaime 5y ago
      But the fact they chose that career often implies they like it. The transactional nature of living wages is always there but let's not forget careers can be picked. In particular, art is something you usually don't do for money, and even though journalists can be uninterested, there are 'good' ones who are there because of their interest in the world around them, the facts, opinions and viewpoints.
      - champagnois 5y ago
        I am reasonable enough to see truth in both sides of this argument. Not bad.
baby 5y ago
All I’m reading is that autism is a stupid categorization. It’s too arbitrary and coarse.
golemiprague 5y ago
varajelle 5y ago
A color has a red, a blue, and a green, and also am alpha component. It can be converted to hue, saturation, ... If the hue is the spectrum, then the saturation or the alpha could be the intensity of it. All the so called misconceptions could be interpreted that way. But I suspect I'm taking the analogy too far
massung 5y ago
This comment may come out wrong, but it is intended as an honest question (at the end) on this topic (whether it be autism or ADHD)... Speaking only for my self, my own perceptions, and very little knowledge or understanding of what such a diagnosis _actually_ means, I think the biggest "issue" (or misunderstanding) I have is with respect to how it "dumbed-down" to non professionals. I liken most of the comments I hear - and read (online, in news/articles) - about autism to those of astrology: literally these are traits that describe every last person who has ever lived. It's just a matter of what side of the bed you happened to wake up on that day. For example, I literally just googled "autism symptoms" and the first link is to the CDC, which quickly summarized the following (highlighting a few). And before I list these, please know I'm not knocking or attempting to belittle the following items as opposed to noting what myself - and likely many, many others - initially think when they hear something phrases like those being written in an article or stated by a "random" parent. * Avoids or does not keep eye contact - literally so many people I know who just aren't very assertive or are extra shy * Does not share interests with others - so, only children who grow up learning to play alone? * Lines up toys or other objects and gets upset when order is changed - I dislike things in my house not being symmetric, so what? * Plays with toys the same way every time - kids _love_ repetition * Has obsessive interests - like me and programming at age 6? * Must follow certain routines - most kids thrive off routine and schedules Then there's an entire list of things that parents likely should never look at because they're mind will instantly jump to "my kid has autism" and think they should be treated special: * Delayed <insert whatever skill here> - everyone develop and different rates * Usually eating/sleeping habits - seriously? as compared to...? * Constipation - really? * Lack of fear or more than expected - so pretty much "different than me?" I'm HONESTLY ASKING what people who have this condition (or parents/siblings of them) would like those of us who only have these dumbed-down snippets to know about them and think about instead? If I can train myself to think of X whenever I hear symptom Y then I think things will be better. But right now, the best I can do is just remind myself "what do I know?" and try and be helpful.
Daub 5y ago
TFA describes a nice distinction. A value like lightens exists as a ramp of intensity, bound at each end by zero and one. Hue, on the other hand, is effectively a range of differences, each blending to the other. I can think of few other phenomena which are measured in this way. Personality type is the only one which comes to mind.
skissane 5y ago
The author of this article appears to be ignorant of the concept of Broad Autism Phenotype (BAP). Many people who say they have “a little bit of autism” probably actually have BAP, and read that way, what they are saying is sensible. I think the author of this article is accusing others of speaking in an ignorant way, yet they seem to me to have some of the same ignorance they accuse others of having.
MichaelMoser123 5y ago
i don't know much about neurology, but isn't it a bit of a problem to define such a diverse set of symptoms under the same label? Are we even sure, that this variety of symptoms can be explained by a single root cause, or if they are even related at all?
jklinger410 5y ago
The author requests a very reasonable and long overdue change from the scientific and medical world: > In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse. Please, please break autism into distinct disorders. So much harm is being done by having such a wide spectrum.

336 points by stared 5y ago

She is missing the point of "a gradient". I.e. to know how much help or space someone needs without going into 7 dimensions of traits. Everyone can't be psychiatrists ...

mannykannot 5y ago
I see nothing here to suggest that the author is missing the point of “a gradient”; on the contrary, she knows what it is, that it is not what is meant by “spectrum” here, and argues persuasively that mistaking the latter for the former causes misunderstanding. Here, she is giving an example of how this can happen: “My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile. “”That means I am less functional than 99% of people. Does that seem mild to you?” I asked her. “But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely.“
- _y5hn 5y ago
  A typical spectrum is the exact same thing as gradients of frequencies. The difference is just in interpretation and actionable mitigations. You can operate on both levels of such a model, for different purposes and effects.
  - mannykannot 5y ago
    This is not a typical spectrum in the sense you describe. As far as I know, There is no plausible model in which the various categories of the spectrum are explicable as different values of a single continuous variable. Attempting to apply this model seems to be part of the problem.
    - _y5hn 5y ago
      You can say everyone is unique (unique categories), but you can also say everybody is human (one category). Being gradients/spectrum _is_ the model. All models about life will be flawed, unprecise and pretty shallow. It's important to be aware of and avoid misuse and misapplications of such models. This doesn't mean you can never use any model. They are tools, and we must have awareness of their outcomes and shortcomings. Even simple models can have very complex outcomes in a complex world, or when dealing with individuals (singletons) vs populations (accumulations).
      - mannykannot 5y ago
        By writing “gradients/spectrum” you are begging the question here, assuming that the spectrum is a categorical variable with an underlying gradient, analogously to the color spectrum’s basis in frequency. What you have not said, so far, is what psychological variable you regard as analogous to frequency.
        _y5hn 5y ago
        Sure. By going into the perception part of frequency, or even psychology, we go more into the subjective. We can start to see colors, or types/groups of people's minds. This can help with understanding differences, in groups, types or categories. It's all tools, and such categorization might help with differences that people struggle with. For example, more specific struggles than autism/non-autism alone. But then again, you can also find commonalities even on the individual level, that might help universally. So it's all multiple models and some of them operating in multiple dimensions. Inventing new models doesn't automatically discard other models. My point is simply, instead of looking at it as either this OR that, the models are that model AND that model too, while trying to recognize strength and weaknesses of our biases. When confronted with new information, we tend to discard old information, as if it's all unapplicable or not politically correct. That's perhaps psychology too :) Perhaps, linked to the competitive nature of humans.
        mannykannot 5y ago
- emodendroket 5y ago
  The argument is clear but not entirely persuasive. There are a lot of people on the spectrum who have no hope of expressing their thoughts in an essay like this or ever living independently. Whether we call it “mild” or “high-functioning” or some other choice along the euphemism treadmill, it does not change the fact that these people have very different prospects.
  - mannykannot 5y ago
    I may have misunderstood your point here, but I do not think the author intended to suggest that her situation was in any way a worst case, or to minimize the difficulties faced by others. On the other hand, I do think she was pointing out that terms like high or low functioning are not categories of the spectrum, and nor are they the sort of issue it is intended to differentiate between.
    - emodendroket 5y ago
      I took the point of the piece to be that thinking about it in terms of "best" or "worst" cases was itself wrongheaded, and that there's no meaningful distinction you could make between "high" or "low" function. Assuming that's what she meant, I don't agree.
      - mannykannot 5y ago
        I feel that it is implicit in the passage I quoted that the author sees such a distinction, but that her doctor was mistaken in assuming that it is determined by the spectrum diagnosis.
- blitzar 5y ago
  > ”That means I am less functional than 99% of people. Does that seem mild to you?” I asked her. If you are less functional than 99% of people, but more functional than 99% of autistic people, one might consider that mild autism yes.
  - deleted 5y ago
    [deleted]
  - mannykannot 5y ago
    Arguably one might, but one would be being uselessly tendentious in so doing.

test0account 5y ago

I don't mind the assumptions. I don't think we are unfairly characterized. What we are is unfairly treated most of the time.

joenathanone 5y ago

I work in this field and I dislike takes like this, where individuals think they can speak for a whole group. Also this “Having sensory processing issues doesn’t make you “a little autistic.” It makes you someone with sensory processing problems. Autistic people will understand your struggles and welcome you as a fellow neurodivergent cousin, but that’s it. But in order for a person to be considered autistic, they must have difficulty in multiple categories spanning the spectrum.” If someone says that they are ‘a little autistic’ they aren’t saying that they ‘are autistic’, they are just attempting to emphasize. Don’t destroy that by getting into a semantic debate.

manwe150 5y ago
I assume ‘empathize’ is meant there?
whalesalad 5y ago
Autism is still wildly misunderstood. It’s a big label on a very very big bag of diverse symptoms. I don’t know how any reasonable scientist could gatekeep something so amorphous and loosely defined. You can take a child to 4 different doctors and they will all diagnose “autism” differently. It stands to reason no one knows the truth. We are all just making this up as we go along.
- 323 5y ago
  Maybe they should split it into more specific categories. Like we don't just say "you have heart disease".
  - netizen-936824 5y ago
    Personally, I like the idea of reclassifying things based on biochemical mechanism. Not that this is any small undertaking, as we need to understand the mechanism that leads to the symptom(s) and develop some sort of reliable test for them. This goes for all psychological issues though, beyond just ASD

swayvil 5y ago

I suspect that autism is a special shape of attention (and by attention I mean what you direct when you pay attention, that which gets jerked around when you are distracted and what you concentrate when you concentrate). Call it "habitually concentrated". We study that kind of stuff in the meditation scene.

Khelavaster 5y ago

Someone wearing red is absolutely "a little" on the rainbow spectrum compared to wearing brown, white, silver, or black...

kstenerud 5y ago

Another shitty development is how "mild" autism has become a trendy status symbol. Psychiatrists are now inundated with so many diagnosis requests from neurotypicals that actually autistic people such as my wife and I cannot get the official diagnoses we need for government programs, NGO memberships, school and workplace accommodations, etc. There are now literally years-long waits to even get an appointment! Autistic people now have to add the preface "actually autistic" to hopefully get some understanding.

globular-toast 5y ago
This happened with gluten intolerance although seems to have had the positive effect of raising the profile of actual gluten intolerance (like coeliac disease) and vastly increased the availability of gluten free products. I wonder if there could be a similar upside for people with "actual autism".
- thathndude 5y ago
  I think we are seeing that effect with regards to mental health and autism. It seems to me that there is at least a greater understanding. Growing up, I was likely right on the bubble of being diagnosed. Unfortunately, instead I was just labeled a bad kid. Now I have a child with an official diagnosis, and I see a lot of the traits from my childhood, and things that I struggled with and her, just magnified. I think if I were to go through the school system now, someone probably would have at least suggested that I get tested. Rather than berating me day after day and labeling me a bad kid
- TedDoesntTalk 5y ago
  Yeah, I used to laugh at the gluten intolerance epidemic. Then as an experiment I cut it from my diet. I was not at all intolerant, I just wanted to try it. I could not believe the difference. For example, I never realized that some foods made me tired. Now when I eat breads or pastas, I notice i am tired afterwards (not immediately but after a time). Very strange.
  - 5y ago

globular-toast 5y ago

This is interesting to me as the author is definitely right that people use the word "spectrum" wrong. It has come to mean a gradient rather than a spectrum. But that's natural language for you. There's not much use fighting it. I do think that when people talk about being "on the spectrum" etc, it is well understood what they mean. I'm sure everyone on HN knows at least one person who is "a bit autistic" and maybe even considers themselves to be. We all know what it means. It might be the wrong words, technically, but we do seem to be communicating the right thing.

jdowner 5y ago
The reason that some autistic people get upset by that usage is that is diminishes how they experience life. It's like saying, 'everyone is a little black'. There is a big differences between having the genes of a black ancestor in your family tree, and experiencing life as a black person. So, to autistic people, you are not communicating the right thing.
- nzmsv 5y ago
  But, to play devil's advocate, isn't this exactly what we should want, long term? I think the end goal is for Black and autistic people to be thought of as people first and foremost, and their differences would take a back seat. This is the only way we can be one big happy family. Wouldn't the best way to accomplish this be for the rest to realize that they actually have something in common with the marginalized groups? Imagine a white supremacist who learns they had a Black ancestor. That would transform their whole world view. Same with autism: neurotypical people being able to relate to quirks that cause social exclusion isn't something to shut down. We should be celebrating the normalization of these things because that is how they stop being markers of the "other". Sometimes I wonder what the people who are up in arms about being "not properly" Black, autistic, etc. have as their end game. Perpetual exclusion of the marginalized groups for sympathy points? I think many would gladly trade those points for greater inclusion.
  - SamoyedFurFluff 5y ago

monetus 5y ago

Tangential, but this audio book about the experience of a young autistic Japanese has been useful to me in more ways than one. The reason why I jump (1) https://m.youtube.com/watch?v=eZe8_60zZtg https://m.youtube.com/watch?v=eZe8_60zZtg

verisimi 5y ago

I find Dr Moulden's explanations of autism excellent - a type of ischemia (stroke).

alvarlagerlof 5y ago
How is that supposed to make sense?
- verisimi 5y ago
  I'm not clear on your question. The point is that autism could be the consequence of damage to nerve cells. When given to an adult, a stroke may cause physical and mental issues. The same would be the case for a child, but (especially for young children) the symptoms would appear differently.

deltahotel 5y ago

many thanks for this article. it helps me understand my son better and react better when people ask me about his autism level.

VampireWillow 5y ago

a) I've never heard anyone say "we're all a little autistic". I think by and large people see autism as a spectrum that you can be on or not. b) Her idea of how autism is diagnosed is wildly optimistic. It can work for self-diagnosis, ie "no diagnosis", but every psychologist and psychiatrist has a different idea of how to diagnose it. If you don't present repetitive movements, it will likely be very difficult to get a diagnosis. One of the problems is how the DSM works. To vulgarize, it's a tool to diagnose dysfunctional abnormality. But atypical doesn't mean dysfunctional in the same way as for neurotypical people. And "normal" changes based on culture and context, the very concepts used to describe symptoms will change over time. I think it's easier for individuals to recognize that they are neurologically atypical, but that's simply not a diagnosis just yet, so they can be misdiagnosed a lot. And there are fads in psychiatry that follow popular culture somewhat, so if yesterday's ADHD is today's autism, the goalposts are moving. So hey, maybe trying to put a single label on such a complicated spectrum will always be a problem, and we should provide help and resources to people who need it without trying to boil things down to one word.

mekkkkkk 5y ago

Isn't this caused by a general oversimplification of autism to mean "difficulty handling social situations"? I feel that autism is being thrown around as a description of this specific, limited set of traits that do not align with its formal definition. And as with everything, if some word is being used for some thing other than it's original definition, it will start to lose meaning (or gain meaning depending on how you look at it).

adeelk93 5y ago
Interesting point. 100 years ago “idiot” and “mental retardation” were medical diagnoses. 100 years from now, both the evolution of language and the advancement of medicine may similarly antiquate the term “autism.” Maybe this is a perpetual cycle when it comes to mental health terminology.
- gruez 5y ago
  >Maybe this is a perpetual cycle when it comes to mental health terminology. yes, the euphemism treadmill. https://englishcowpath.blogspot.com/2011/06/euphemism-treadmill-replacing-r-word.html https://englishcowpath.blogspot.com/2011/06/euphemism-treadm...
  - danuker 5y ago
    Reminds me of George Carlin. Warning: politically incorrect content ahead. https://www.youtube.com/watch?v=mUvdXxhLPa8 https://www.youtube.com/watch?v=mUvdXxhLPa8
- astura 5y ago
  >Interesting point. 100 years ago “idiot” and “mental retardation” were medical diagnoses. "Mental retardation" was the proper and polite lay term in my lifetime. It was only in 2010 that government agencies started removing the word "retardation" from their names. (See: Rosa's Law)

lr4444lr 5y ago

The problem really is that many or most positive autism diagnoses do not come with medically testable symptoms, much like depression or anxiety. And it really hurts the truly intractable, very clinically observable cases to allow for this definition creep IMHO, putting a threshold of points on some psych survey, no matter how well normalized, and simply medicalizing people. I am not even convinced your typical aspie programmer with the high vocabulary who's bad with girls even has the same underlying medical problem as the mute kid who rocks in the corner in fetal position and didn't learn to use the potty until he was 6. Some of these kids for example are improved dramatically when they get on immunomodulating drugs. On others it has no effect. The way some of the "advocates" speak with such cocksure certainty about what is and isn't only hurts the larger cause.

guerrilla 5y ago
> do not come with medically testable symptoms Not really true where I am. You have to go through all kinds of tests and be tested for other things (to make sure you're not those.) I suspect it's the same everywhere.
- watwut 5y ago
  The other issue with Sheldon is that Sheldon is actually abusive guy and his friends are actually enablers. With best friend being mix of enabler and victim.
- netizen-936824 5y ago
  Where are you located and what, precisely, do these medical tests entail? What biochemical mechanisms do they look at for accurate diagnoses? From my observation of psychological testing and diagnosis on the research side in the US, its a shit show. Most of it is self reporting and questionnaires which don't actually tell us anything about underlying mechanisms. Its just a bunch of symptom check boxes.

StephenJGL 5y ago

The "along" the spectrum part that most latch on to subconsciously is related to spectrums being a visual measure of energy level. That part does increase along the spectrum. That being said I think her interpretation is much more useful for the actual subject matter and important for people to keep in mind. People with actual diversity will often appear high and low functioning in various ways. It's important to understand that dynamic.

fallingfrog 5y ago

I have diagnosed adhd and I’m always struck by how much overlap there is between the way autistic and adhd symptoms are described. I definitely identify with a lot of the traits of person 1. For me, a lot of my issues stem from my being unable to direct my attention towards anything that my brain designates as boring, and away from anything I feel to be exciting. I also naturally drop out of the real world into my own head where there’s a constant movie reel going on of memories, songs, hypothetical situations, whatever. I’ve sometimes been zoning out in my own world and suddenly realized that one of my friends was standing in front of me, waving their arms to get my attention. My eyes were open but I didn’t see them. I tend to miss pieces of conversations and lose touch with people and forget to do things because of these issues. So, I dunno, anyways there’s a lot of overlap. But I’m a pretty good coder because I visualize the data and the relationships between the data, and figure out how it needs to be transformed. And the only reason I have a career is that I became obsessed with programming as a teenager. So, the neurodiversity giveth and it taketh away.

Royi 5y ago
Amy Klin has a nice model of Autism (At least the the non harsh cases) which I interpret as the brain at early age (0-18 months) can't focus. So by this theory ADHD and Autism might be seen as two sided coin.

emodendroket 5y ago

I would say this is because the experience of someone with “high-functioning,” or whatever euphemism we prefer now, autism is utterly different than that of someone with nonverbal autism (which is often comorbid with profound mental retardation). So different that they may as well be different conditions. It is pretty natural for laypeople to come to the understanding lamented here, that it goes from “a little” to “a lot,” if they’re told that people who present this differently are both autistic. In fact I think many autistic community disputes are people talking past each other because of this difference. I guess they must have had a good reason, but eliminating them Asperger’s diagnosis would seem to me to just exacerbate the problem.

mpyne 5y ago
> I would say this is because the experience of someone with “high-functioning,” or whatever euphemism we prefer now, autism is utterly different than that of someone with nonverbal autism (which is often comorbid with profound mental retardation). So different that they may as well be different conditions. I've definitely seen this as a challenge in describing two of my boys, who both have autism that additionally presents with being nearly non-verbal. You say to someone that they have autism, and in their mind they're thinking 'oh, like Sheldon'. But it's as you say, it's not nearly the same. Sheldon is closer to NT than he is to my boys.

psychoslave 5y ago

>When people discuss colours, they don’t talk about how “far along” the spectrum a colour is. They don’t say “my walls are on the high end of the spectrum” or “I look best in colours that are on the low end of the spectrum.” Of course they don't, people all know that color is a complex mix depending on what light is projected on the wall, what material constitutes the wall (glass?), and so what it will throw back, as well as the physiological condition of who look at it (color blind), as well as psychosocial framing (are you the hidden child of Sapir&Whorf and some Inuit engendered during a fifty shades of white party who just ate some psychedelic mushroom?). Or maybe most of them don't, obviously don't read HN, and will look at you strangely if you start to reference any of these things, or at best will ask for some explanations. Just like when you talk about autism spectrum. Merry Christmas to everybody.

armchairhacker 5y ago

autism (and ADHD) are extremely broad diagnoses. If I hear someone has autism, the only thing I can assume is that their authentic personality is "not normal". And even then they could be so good at masking that nobody can tell the difference.

kloch 5y ago

> Red is not “more blue” than blue is. Red is not “more spectrum” than blue is. I get what they are saying re: autism but this is an incorrect analogy. If you measure wavelength then red is quantitatively more than blue. If you measure frequency then red is less than blue. Where does this response put me on the spectrum?

the_biot 5y ago
You take a detail from a sentence and complain about the accuracy of that detail while deliberately missing the actual point. Your place on the spectrum is: internet commenter

stared 5y ago

OP here, autistic, not the author. I like how this post fights with "scalar fallacy" (https://news.ycombinator.com/item?id=8132525 https://news.ycombinator.com/item?id=8132525, http://observationalepidemiology.blogspot.com/2011/01/scalar-fallacy.html http://observationalepidemiology.blogspot.com/2011/01/scalar...), prevalent in popular psychology. My small nitpicks: 1. IMHO, the gradient (from "a bit autistic" to "highly autistic") makes sense - as long as we treat it as the first principal component of a multidimensional process. I know many people who learned that they are autistic in their 30s, as on ALL axes, their symptoms were relatively mild (especially women, who are vastly underdiagnosed). After realizing they are autistic, they often cried, explaining decades of their life and why they always felt different. 2. While I understand where "Don't assume anything about an autistic person." comes from, I disagree. If we take it literally, the word "autistic" makes no sense (as it is not related to anything). Sure, stereotypes are both inaccurate and harmful + there is great neurodiversity among autistic people - "If you've met one individual with autism, you've met one individual with autism". The best antidote is Bayesian thinking - having reasonably wide priors and modifying the posterior with each measurement.

lowdose 5y ago
I still don’t get why Asperger is seen as a subgroup of Autism.
- stared 5y ago
  It's not. Now it is not considered neither a separate unit nor a subset of autism. (As there is no meaningful distinction between Asperger Syndrome and Autism without cognitive impairment.)
  - denton-scratch 5y ago
    I didn't understand that - "not a separate unit". What is the relation between Asperger's and Autism?
    - emodendroket 5y ago

dsizzle 5y ago

> Don’t assume anything about an autistic person. But yet the author describes herself as an "autist," so presumably the author does believe we can make some reasonable assumptions about what being autistic means -- what would be the point of using that label otherwise? I think the point here is that some of one's assumptions will be wrong and that you should flexibly adapt rather than stick with your initial assumptions? I would agree with that.

psyc 5y ago

As someone on the spectrum myself (in a family that produced 2 others, as well) I still don't really understand what rationally makes all of it "autism". The OP has a section on what we have in common, but it didn't answer my question. Is it a scientific or medical thing? A root cause? Or is it the type of situation where 100 years from now they'll look back and laugh at our archaic psychiatry.

pxc 5y ago

The 'spectrum' has always been an outrageously bad metaphor (with autism and elsewhere in psychology), and this article's approach to 'correcting' that by further extending the metaphor just perpetuates another (even more convoluted and ridiculous) iteration of the confusion. The use of the color spectrum is especially unhelpful, since the qualitative features of the color spectrum are totally unrelated to what makes it a spectrum, and so the 'distinction' the article tries to draw between a spectrum and a gradient is totally specious. What makes the color spectrum a spectrum is precisely that it's formed by variation along a single dimension (wavelength or frequency, whatever)— the exact structure the article describes as belonging to a gradient as 'opposed' to a spectrum. The diagrams with parts of the color spectrum blacked out are pure cringe. Why are you making this broken, disanalogous metaphor worse instead of throwing it away?? It's not hard to describe the actual structure of what are (inaptly) called 'spectrum disorders' in contemporary psychology. They are disorders characterized by clusters of related traits, behaviors, and experiences which (variously in terms of severity, frequency, intensity, or something) can each vary in degree. Please stop trying to 'fix' the spectrum metaphor. Just kill it.

drewcoo 5y ago
Spectrum is just imagery for a continuum, which autism is. Would you prefer diapason[1], as in the full range of a thing's sound? [1] Through bad spelling (and not synesthesia) I typed "diapasm" first, but it seemed wrong. Turns out it's smelly and not soundy.
- pxc 5y ago
  Imo, 'continuum' still fails to clearly connote the characteristic of having multiple dimensions of variation rather than just one, even though in some contexts (like in the phrase 'space-time continuum') it is used to name something more structurally analogous to 'spectrum disorders' than spectrums.
- maximus-decimus 5y ago
  The whole article is about how it's not a continuum but a set of discrete unrelated traits.

ok_dad 5y ago

My opinion as an autistic person is the more people who think they’re autistic the better, it’ll normalize it and we’ll all have better lives. Look at the old chestnut: gluten. Now, because everyone thinks they have a gluten allergy, people who actually have them can eat so much more good food. That’s my hot take for today.

WillPostForFood 5y ago
My hot take: a bunch of shitty gluten free food products have displaced better, cheaper, quality food. The people who think they are gluten intolerant are worse off, the people who are gluten tolerant are worse off, and the .5% of actual celiac sufferers are better off.
- caslon 5y ago
  Aside from the pandemic years, which are outliers, food has been consistently getting drastically cheaper for decades: https://www.ers.usda.gov/data-products/food-expenditure-series/ https://www.ers.usda.gov/data-products/food-expenditure-seri...
  - danuker 5y ago
    What actual spreadsheet are you looking at? "Constant dollar food and alcohol expenditures, with taxes and tips, for all purchasers"? Because expenditure grew. Look at the FAO food price index, and you see it only decreased since 2010-ish, but on average since 1961 prices grew to roughly match inflation. https://www.fao.org/fileadmin/templates/worldfood/images/home_graph_3_dec265.jpg https://www.fao.org/fileadmin/templates/worldfood/images/hom... https://www.fao.org/worldfoodsituation/foodpricesindex/en/ https://www.fao.org/worldfoodsituation/foodpricesindex/en/
- alisonkisk 5y ago
  Can you give one example?
- emodendroket 5y ago
  Nobody forces you to buy the gluten-free pasta or whatever, so I can't see how things are worse for the people who neither have nor believe themselves to have Celiac disease.

arendtio 5y ago

I am not a physicist, but I am wondering if light is a good example to explain a spectrum. My primary concern is, that light indeed has a primary order (wave length) and composition of wave lengths isn't being talked about here. While thinking about an alternative example, I came across sound. Frequency also plays a role, but here the composition of different frequencies is important to create melodies. The presents of different frequencies could be the equivalent of a factor being strong or weak. What do you think, do you have other ideas/examples/thoughts?

epgui 5y ago

Totally tangential to the main point, but is no-one going to comment on the fact that the colour spectrum actually does in fact go from less-something to more-something? It's a spectrum of light frequency. The colour labels, like "blue" or "red" are a psycho-cultural construct that are in large part shaped by the cone receptors in our eyes, but it's still a spectrum of light frequency.

orlp 5y ago
Tell me, where does magenta lie on this proposed light frequency spectrum? What about black, or white? Brown? Is the dress black and blue or white and gold? There's much more to colour perception than just light frequency + psycho-cultural constructs.
- danuker 5y ago
  Even the color spectrum depicted in the article misses magenta, due to it being a color made of two frequencies, not just one.
- epgui 5y ago
  Magenta, black, white and brown are all completely explainable with the light spectrum, photoreceptors and psychocultural constructs. Nobody ever claimed that every possible colour perception needed to correspond to a single wavelength. Rather, every possible colour can be constructed from a combination of wavelengths.
  - alanbernstein 5y ago
    The color spectrum is an apt comparison. Yes, a single pure hue lies on a simple one dimensional wavelength scale. But a color sensed by your eyes is the result of different intensities on three different receptor types, making the perceptual space more or less three dimensional. The color emitted by an object is even more complicated, with an intensity for each visible wavelength (to a first order approximation). Maybe the comparison should have been more explicit about how the one dimensional color spectrum is a drastically simplified representation of color physics, even though it already includes qualitatively distinct colors on a simple scale. On the other hand, while color has a lot of nuance to it, the total light energy emitted from a source might be a much simpler, totally scalar way to characterize light sources. If you squint hard, you can think of the autism spectrum concept as closer to intensity than to color.

bschne 5y ago

Wouldn't things that are some combination of continuous variables be called a "space", and not a "spectrum", in the common usage of those terms? To use the color example in this post, we for instance talk about the RGB or CMYK color space if we mean to say that a color is a combination of those primary colors. Additionally, there was an ACX post a while back [1] talking about how to model psychiatric conditions (the author of which is a psychiatrist) which did talk about spectrum meaning that it is along a continuous axis of severity instead of being something you either have or don't. While it didn't talk about separate symptoms, I'd venture a guess that they are usually reasonably correlated if something is assigned it's own diagnosis, and in many cases it may be more meaningful to reduce dimensionality to a 1D spectrum instead of looking at every variable in isolation? 1. https://astralcodexten.substack.com/p/ontology-of-psychiatric-conditions https://astralcodexten.substack.com/p/ontology-of-psychiatri...

stared 5y ago
In general, spectrum is an infinitely-dimensional vector space. For each frequency, you get a value. Using "spectrum" for a "scalar" is a misnomer.

glacials 5y ago

I was diagnosed over a year ago and have yet to "come out" for fear of the exact things the author describes ("but you don't seem autistic", "yeah we're all a little like that", etc.). It's hard to understand what someone struggles with when they've spent their whole lives being trained to hide it. Imagine having tremendous back pain since birth, so that multiple times a day you need to lie down for an hour. You tell people about it and they just say "you don't look like you're in pain", or "yeah everyone has back pain", and they imagine you weak for being so affected by it. As a child you were raised that it's taboo to manage your back pain, so you often have to make up excuses to go secretly lie down. You even believe yourself that you are just a failure for needing to do this when everyone else can soldier on. You have to turn down hikes, trips, even relationships; if a friend invites you over you need to make sure there's an exit strategy, or at least a place you can secretly take a break if you have a spike. This is what my life is like. I have been trained to look like I'm not in pain -- to hide my shutdowns and meltdowns and hypersensitivities, through willpower or through physically removing myself. It affects my work, my relationships, and my daily life, but the worst part is just the pain itself.

stepbeek 5y ago
I’m sorry this has happened to you. I’ve had a chronic sickness for three years now and whenever I’m impacted by it I’m met with polite confusion. “Oh, isn’t that over?” I can’t imagine what a lifetime would be like.
neal_jones 5y ago
Yea, I pretty excited when I found out because it provided answers and tools, but mentioning it to anyone did not result in similar excitement, instead some took it almost like an insult to them. Didn’t take long before I stopped talking about it.
sangnoir 5y ago
> "you don't look like you're in pain" You don't have to imagine this - it happens a lot today. A large number of painful gynecological procedures are done with no pain management besides the doctor saying "This might pinch a little".

kazinator 5y ago

The main value of this good article to someone who isn't a complete idiot is raising awareness of an issue: that there are (supposedly) people out there who think that the autism spectrum is just an intensity scale where the "low end" is mild. Watch out for this and gently guide toward a better understanding.

champagnois 5y ago

I have lived a hard life, but I acknowledge no one cares about my hardships and they care even less about my identity. Healthy, functional people are just looking for ways to get further ahead in life. People are transactional and do not have time for one's long and detailed explanation of a self definition unless their time is rewarded in some way. Happy holidays.

_aphw 5y ago
Very ominous but that's not true. There are plenty of healthy, functional kind individuals who are interested in people of all kinds. Photographers, good journalists... and people who simply are more empathetic to the life circumstances of someone. Furthermore, if someone is interesting, for the majority of people there is a natural curiosity being piqued to learn more about that person. Nothing necessarily transactional.
- champagnois 5y ago
  Photographers and journalists are people who's time is rewarded with money as compensation, as well as fame and status in some cases. This follows in line with the claim -- >>>"People are transactional and do not have time for one's long and detailed explanation of a self definition unless their time is rewarded in some way." People who are just empathetic or curious, sure. I will not deny those scenarios exist.
  - gallegojaime 5y ago
    But the fact they chose that career often implies they like it. The transactional nature of living wages is always there but let's not forget careers can be picked. In particular, art is something you usually don't do for money, and even though journalists can be uninterested, there are 'good' ones who are there because of their interest in the world around them, the facts, opinions and viewpoints.
    - champagnois 5y ago
      I am reasonable enough to see truth in both sides of this argument. Not bad.

baby 5y ago

All I’m reading is that autism is a stupid categorization. It’s too arbitrary and coarse.

golemiprague 5y ago

varajelle 5y ago

A color has a red, a blue, and a green, and also am alpha component. It can be converted to hue, saturation, ... If the hue is the spectrum, then the saturation or the alpha could be the intensity of it. All the so called misconceptions could be interpreted that way. But I suspect I'm taking the analogy too far

massung 5y ago

This comment may come out wrong, but it is intended as an honest question (at the end) on this topic (whether it be autism or ADHD)... Speaking only for my self, my own perceptions, and very little knowledge or understanding of what such a diagnosis _actually_ means, I think the biggest "issue" (or misunderstanding) I have is with respect to how it "dumbed-down" to non professionals. I liken most of the comments I hear - and read (online, in news/articles) - about autism to those of astrology: literally these are traits that describe every last person who has ever lived. It's just a matter of what side of the bed you happened to wake up on that day. For example, I literally just googled "autism symptoms" and the first link is to the CDC, which quickly summarized the following (highlighting a few). And before I list these, please know I'm not knocking or attempting to belittle the following items as opposed to noting what myself - and likely many, many others - initially think when they hear something phrases like those being written in an article or stated by a "random" parent. * Avoids or does not keep eye contact - literally so many people I know who just aren't very assertive or are extra shy * Does not share interests with others - so, only children who grow up learning to play alone? * Lines up toys or other objects and gets upset when order is changed - I dislike things in my house not being symmetric, so what? * Plays with toys the same way every time - kids _love_ repetition * Has obsessive interests - like me and programming at age 6? * Must follow certain routines - most kids thrive off routine and schedules Then there's an entire list of things that parents likely should never look at because they're mind will instantly jump to "my kid has autism" and think they should be treated special: * Delayed <insert whatever skill here> - everyone develop and different rates * Usually eating/sleeping habits - seriously? as compared to...? * Constipation - really? * Lack of fear or more than expected - so pretty much "different than me?" I'm HONESTLY ASKING what people who have this condition (or parents/siblings of them) would like those of us who only have these dumbed-down snippets to know about them and think about instead? If I can train myself to think of X whenever I hear symptom Y then I think things will be better. But right now, the best I can do is just remind myself "what do I know?" and try and be helpful.

Daub 5y ago

TFA describes a nice distinction. A value like lightens exists as a ramp of intensity, bound at each end by zero and one. Hue, on the other hand, is effectively a range of differences, each blending to the other. I can think of few other phenomena which are measured in this way. Personality type is the only one which comes to mind.

skissane 5y ago

The author of this article appears to be ignorant of the concept of Broad Autism Phenotype (BAP). Many people who say they have “a little bit of autism” probably actually have BAP, and read that way, what they are saying is sensible. I think the author of this article is accusing others of speaking in an ignorant way, yet they seem to me to have some of the same ignorance they accuse others of having.

MichaelMoser123 5y ago

i don't know much about neurology, but isn't it a bit of a problem to define such a diverse set of symptoms under the same label? Are we even sure, that this variety of symptoms can be explained by a single root cause, or if they are even related at all?

jklinger410 5y ago

The author requests a very reasonable and long overdue change from the scientific and medical world: > In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse. Please, please break autism into distinct disorders. So much harm is being done by having such a wide spectrum.