"many neurodivergent people aren’t hindered by autism"<p>This is more or less not true. If it doesn't hinder a person in <i>any</i> aspect of their life, they don't fit the DSM-V criteria for a diagnosis.<p>(Many neurodivergent people aren't hindered by autism because they have <i>some other neurodivergence</i>, but that's a different issue with this sentence)
There is a map-territory problem here.<p>There is some underlying reality to what autism is, even if we do not have a good understanding of it; and even if turns out to be multiple unrelated things that happen to have similar symptoms.<p>Of the people with those actual conditions, it seems entirely plausible that some will not be hindered.<p>The authors of the DSM-V needed to create a diagnostic criteria for a condition that they do not understand, and for which no objective test is known. Further, their objective was designing something useful in a clinical setting. Giving those constraints, saying "if it is not a problem, we don't care about it" is entirely reasonable; despite not being reflective of the underlying reality.
This is an important point.<p>To a first approximation, the DSM is about what a majority thinks is wrong. Sometimes this is pretty close to universal. Sometimes it isn't: <a href="https://en.wikipedia.org/wiki/Homosexuality_in_the_DSM" rel="nofollow">https://en.wikipedia.org/wiki/Homosexuality_in_the_DSM</a><p>This study suggests that there are several different things called "autism". That's because "autism" as a term is not about some underlying reality, but a bucket that a bunch of people get tossed when some medical professionals see them as similar. And they come to the attention of those medical professionals because those people either say they have a problem or are called a problem by others.<p>But a problem with a person is always about a person in a context. Blue-eyed people are hindered by their eyes in bright light. Do we call that a genetic disease and look for cures? Not here, because there are enough "normal" people with blue eyes. But if it was just 1 in 20,000 people with blue eyes, it'd surely be treated as a disease.<p>Or we could imagine a "Height Deficiency Syndrome" characterized by inability to reach the top shelves in a normal house. With an effort, we could surely cure this impactful genetic problem through early application of hormones and the use of new CRISPR-related technologies. Or we could look at it as normal human variation which only "hinders" people because of how our society is set up to cater to "normal" people.<p>But we thankfully now have a term for that sort of nonsense: medicalization of deviance.
That‘s why we have so many late diagnosed. People who are on the spectrum but were able to mask or were just lucky until luck runs out. Then it becomes a problem and a diagnosis. I knew I am different as long as I can remember. It was obvious in Kindergarten and also in every type of school and later in work. I‘m an old millennial and nobody was trained back then in the 80/90s. Before it became a diagnosis and before awareness started to rise, people unalived them, died homeless or in prisons/wards.
The autism itself, depending on the person, is often less of a problem than societal expectations. For example- in a world where <i>everyone</i> was red/green colorblind, such a condition would not be considered a handicap. And in a world where everyone was autistic, many things would be different.<p>Society punishes us severely for not being able to see the difference between red and green, to use that metaphor. And they seem to expect that if they punished us just a little harder, we would suddenly become normal. Thats the big problem. Non conforming behavior is always treated as a crime or offense on some level, but we cannot conform, and therefore must adjust to a life of endless punishment doled out by both authorities and peers.<p>Its quite difficult to go through life that way without developing a negative self image. This goes for people with autism, adhd and other types of neurodivergence.
It's like being tortured to extract information that we <i>do not have</i>. They'll only believe it once they've completely broken you down.<p>And then you meet the next person, who has not yet tortured and broken you, so <i>they again</i> do not believe that you "don't have the intel", and you get to go through it all over again.<p>The worst part is when you start believing for yourself that they're right, that you're holding back, and that it's all your fault for not giving them what they want, just for the life of you you can't figure out <i>how</i>.<p>Getting certainty about my condition did so much to heal me.
As I commented in another thread, there's no a priori reason to believe that the "average" glutamate receptor level is the "right" one. Isn't it possible that there are:<p>1. "Normal" people with a level of glutamate receptors at 10, say, on a scale I'm inventing for this example<p>2. "Autistic" (according to the DSM) people with a level of, say, 5, who are hindered by the effects of being at this level<p>3. "A little bit autistic" people at a level of, say, 8, who aren't hindered and don't meet the DSM criteria, but in fact actually <i>benefit</i> from the effects of being at this level<p>Some "normals" might then want to <i>inhibit</i> their glutamate receptors somewhat to get the benefits of being at an 8 or a 9 on my made-up scale.
There are actually four types of autism, according to new research (and seemingly corroborated by my personal experience, though that's just an anecdote): <a href="https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v1" rel="nofollow">https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v...</a>
Perhaps. But remember that this is a very complex 3D structure with varying receptor densities, it's not "The Glutamate Level", it's some neural network areas with higher or lower excitability connected to other neural networks.<p>Just like with ADHD it's likely that medication will at best have limited effectiveness and many side effects.
The DSM-V criteria are not a good description of the natural category, and most people don't <i>actually</i> use them. They are, at <i>best</i>, a vague gesture in the direction of the natural category. The ICD-11 criteria (6A02) are better, but are still contradicted by, for instance, studies evidencing the double-empathy problem. Trained psychologists know which diagnostic criteria to take literally, and which to interpret according to the understanding of the authors.
If someone doesn't have any deficits or impairments at all then they won't qualify under ICD-11 either:<p>"Deficits are sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning..."
Virtually <i>none</i> of the definitions in the ICD or DSM are entirely correct: that doesn't mean they're not useful. For example, you stop meeting the literal diagnostic criteria of <i>many</i> conditions if they're being treated adequately, but that doesn't mean you no longer have those conditions. Someone on antiretrovirals with no detectable HIV viral load still has HIV, and still needs to take the antiretrovirals. No competent doctor would diagnose them as "cured". Yet, they would not meet the diagnostic criteria described in the ICD-11:<p>> A case of HIV infection is defined as an individual with HIV infection irrespective of clinical stage including severe or stage 4 clinical disease (also known as AIDS) confirmed by laboratory criteria according to country definitions and requirements.<p>and rarely they may <i>never</i> have met these criteria. This is HN, so a computer analogy might be more helpful: ask a non-technical friend to read through some of the POSIX.1-2024 spec, then ask them to explain the signal handling, or the openat error codes. They <i>will</i> totally misunderstand it, because the POSIX specs are not actually clear: their purpose is to jog the memory of the expert reader, and describe the details they might have forgotten, <i>not</i> to provide a complete and accurate description suitable for teaching.<p>(Edit: pointless confrontational passage excised. Thanks for the criticism.)
This bit:<p>> Are you a trained psychologist?<p>seems a bit confrontational, unless you yourself are a trained psychologist, in which case it would seem fitting to volunteer those credentials along with this challenge.
They still are an individual with HIV infection, except that it is in the stage of "remission" or "undetectable" but they have previously been diagnosed with HIV at a different clinical stage.<p>So the definition is perfectly correct, assuming you know what "clinical stages" there are.
Why is someone on HIV antivirals if no test ever confirmed them to have HIV? Presumably, they <i>were</i> confirmed as having HIV and have reduced its load to beneath detectable levels but that doesn't erase the previous confirmation.<p>I think that's all an aside, though, if not the ICD (as suggested by another poster) or the DSM definition initially used, which definition is correct?<p>OP, I think, is clearly harkening back to a previous post on HN (article at: <a href="https://www.psychiatrymargins.com/p/autisms-confusing-cousins" rel="nofollow">https://www.psychiatrymargins.com/p/autisms-confusing-cousin...</a>) by a professional discussing that the public often misunderstands and ignores key aspects of the definition. This seems rather a bit like you pointing out laypeople might read and not understand what they got out of the POSIX.1-2024 spec. Except it seems you're suggesting instead that the layperson understanding is correct.
> <i>Why is someone on HIV antivirals if no test ever confirmed them to have HIV?</i><p>Mu. If it <i>was</i> confirmed, but not "confirmed by laboratory criteria according to country definitions and requirements", then they do not meet the diagnostic criteria (interpreted literally). Suppose, for instance, that there was a procedural error that <i>might</i> have messed up the diagnosis (so is forbidden by regulation), but in this case <i>didn't</i> mess up the diagnosis.<p>I can produce as many of these literally-correct, deliberate misinterpretations as you like. They have no bearing on actual medical practice.<p>> <i>which definition is correct?</i><p>Which definition of "carbon atom" is correct? Our definitions have, for 200 years, been sufficient to distinguish "carbon atom" from "not carbon atom", but those definitions have changed <i>significantly</i> in that time. Autism is that category into which autistic people fall, and into which allistic people do not fall, which is distinguished from several other categories with which it is often confused. (The ICD-11 spends <i>way</i> more words on distinguishing autism from OCD, Tourette's, schizophrenia, etc than on defining it directly.)
But going by the strict notion of DSM-V criteria of providing a hindrance, we hit the somewhat problematic definition whereby a person can have autism at one point in their life (when it hinders them in a context), moves into another point or context in their life (where it does not) and therefore they do not or would not meet the criteria for having autism if they sought a diagnosis at that point in time, and then move back into another point or context in their life where it hinders them and so now they meet the criteria and presumably have autism again.<p>Now, needless to say, this is not how anyone actually thinks about psychiatric or psychological issues in practice, especially with conditions such as autism, and just highlights the relative absurdity of some of the diagnostic metrics, practices and definitions.<p>What we tend to do is tie the diagnosis of autism to the individual identity and assume that it is a consistent category and applicative diagnosis that stays with a person over time because it is biological. We know, of course, that this is despite not having any working biological test for it, and diagnosing it via environmental and behavioural contexts. And don't even get me started on tying in diagnosis of aspergers/autistic individuals with broadly differing abilities and performance metrics on a range of metrics under the one condition such that the non-verbals and low-functioning side of neurotypicals get lumped in with the high iq and hyper-verbal high-functioning aspergers as having the same related condition even though neurotypicals are closer to the non-verbals and low-iqs on the same metrics and scores.<p>The entire field and classification system, along with the popular way of thinking about the condition is, if i might editorialise, an absolute mess.
A person without legs does not stop being disabled because they have no need or desire to walk. The fact remains that should they need or desire to walk in the future the hinderance will still very much exist.<p>A similar example could be made of someone with gluten intolerance. If they do not eat foods that contain gluten they are still gluten intolerant. They are however still disabled by needing to stay in that situation.
Ah yes, but that results in two problems.<p>Firstly a fish without legs objectively does not have legs, but we do not necessarily call it disabled, even though it clearly lacks a facility.<p>Secondly, the autism spectrum disorders are, as I previously mentioned, not obviously just about deficits of behaviours or functions but also can take in extended and exceptional abilities in some areas and greater sensitivities rather than deficits or lack of an ability, so it is not clear that the entire diagnosis can be defined by deficits or lacking things. The high functioning and Asperger's type diagnosis is not about a universal deficit diagnosis and we do not generally call neuro-typical humans disabled because they lack prodigious activity or interest in math, language, or other subjects, even though that can also objectively be measured and called a deficit.
> The high functioning and Asperger's type diagnosis is not about a universal deficit diagnosis<p>To get an Asperger's diagnosis under the DSM-IV you needed some amount of impairment. "Disorder" is in the title of the DSM, if something isn't conceptualized as a disorder it isn't in there.<p><a href="https://www.kennedykrieger.org/stories/interactive-autism-network-ian/about_asds_dsm_iv_criteria_for_aspergers_syndrome" rel="nofollow">https://www.kennedykrieger.org/stories/interactive-autism-ne...</a><p>The "broader autistic phenotype"- that is, related traits but without impairment- exists but it is not a diagnosis.
Being reliant on a particular life situation does strike me as a hindrance in and of itself. Maybe more of a macro limitation than a day-to-day one, but a reasonable definition could encompass that, too.
Maybe they meant neurodivergent as a broader category? Like "some people are neurodivergent but don't have autism"<p>That would be a bit weird though...<p>EDIT: Neurodivergent is very much a broader category. What I meant would be weird is to state the obvious... Very much sounded like they were trying to say some people with autism may not want to get "cured" but using the wrong words
Perhaps your thinking on this lacks grey areas. A healthy percentage of extremely successful people in computing are referred to as “on the spectrum” - are these people helped by having some of the aspects of autism or hindered by it? Why do we need to have a diagnosis for people to have aspects of this pathology?
> This is more or less not true. If it doesn't hinder a person in any aspect of their life, they don't fit the DSM-V criteria for a diagnosis.<p>You're confusing autism itself with Autism Spectrum Disorder. Autism Spectrum Disorder indeed has to do with difficulties ("deficits" / "impairment"). Autism itself on the other paw is a physical, quantifiable difference in neural architecture. Autistic people think and work differently, whether they have been diagnosed with Autism Spectrum Disorder or not.<p>It's also worth noting that autism is not the only neurodivergence, it's just the most widely known one (IIRC).<p>For reference, my copy of the DSM-5 states the following diagnostic criteria for Autism Spectrum Disorder: (sub-items elided)<p>> A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text): [...]<p>> B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): [...]<p>> Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).<p>> D. Symptoms cause clinically significant impairment in social, occupational, or other important
areas of current functioning.<p>> E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
You may be thinking of the "broader autistic phenotype" which does encompass people who are subclinical, and isn't a diagnosis.<p><a href="https://www.verywellhealth.com/broad-autism-phenotype-11727993" rel="nofollow">https://www.verywellhealth.com/broad-autism-phenotype-117279...</a><p>The autism in this study is ASD. This study doesn't have that much to say about people who don't qualify for a diagnosis, since they would not have qualified to take part in it.
Broader autism is four phenotypes :) <a href="https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v1" rel="nofollow">https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v...</a><p>But yes, if you are saying ASD (and not autism itself, as you quoted from the article) is by definition a hindrance, I would be inclined to agree with you, for the reasons you've outlined.
Those four, as studied, are subdivisions of ASD. The paper uses "ASD" and "autism" interchangably (which is I believe standard). Whether they are also subdivisions of something broader is another question. I'm not sure there even <i>is</i> a common scientific definition of autism aside from ASD.<p>BAP, I think, comes from heritability studies of people who are related to diagnosed people but do not themselves qualify as autistic, they are more likely to have traits associated with ASD despite not being diagnosable.
Buddy. If you're building your world view around the DSM you're in serious trouble.<p>The only people who take the DSM seriously are insurance agents and charlatans.