[HN Gopher] "Autism is a spectrum" doesn't mean what you think (...
       ___________________________________________________________________
        
       "Autism is a spectrum" doesn't mean what you think (2019)
        
       Author : stared
       Score  : 201 points
       Date   : 2021-12-25 12:56 UTC (10 hours ago)
        
 (HTM) web link (neuroclastic.com)
 (TXT) w3m dump (neuroclastic.com)
        
       | stared wrote:
       | OP here, autistic, not the author.
       | 
       | I like how this post fights with "scalar fallacy"
       | (https://news.ycombinator.com/item?id=8132525,
       | 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 wrote:
         | I still don't get why Asperger is seen as a subgroup of Autism.
        
           | drewcoo wrote:
           | As opposed to Asperger seen as a Nazi war criminal?
           | 
           | https://www.scientificamerican.com/article/the-truth-
           | about-h...
           | 
           | That label seriously offends some people.
        
           | stared wrote:
           | 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 wrote:
             | I didn't understand that - "not a separate unit". What is
             | the relation between Asperger's and Autism?
        
               | emodendroket wrote:
               | Asperger's has been eliminated as a diagnosis altogether.
        
               | denton-scratch wrote:
               | Thanks.
        
           | dragonwriter wrote:
           | Because when Asperger defined "autistic psychopathy" under
           | the Nazi regime, there was a range between the "good" kind
           | whose "special abilities" were sufficient in relation to
           | their social deficiencies to be valuable to society and the
           | "bad" kind where they weren't; the former were protected for
           | their usefulness and the latter murdered ("euthanized",
           | officially), often at Asperger's personal direction and
           | entirely based on the social dangers he warned about from
           | them, by the Nazis. So until quite recently, "Asperger's
           | Syndrome" persisted as the name for "good" autism.
        
             | emodendroket wrote:
             | All true, but there were actual diagnostic criteria that
             | could be used to differentiate the subgroup from the larger
             | one.
        
       | swayvil wrote:
       | 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 wrote:
       | Someone wearing red is absolutely "a little" on the rainbow
       | spectrum compared to wearing brown, white, silver, or black...
        
       | emodendroket wrote:
       | 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 wrote:
         | > 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.
        
       | arendtio wrote:
       | 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?
        
       | kstenerud wrote:
       | 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.
        
         | Khelavaster wrote:
         | It's the government's fault for refusing to expand licensing
         | enough that there's a reasonable supply of doctors for even
         | intake apointments.
        
         | phil21 wrote:
         | I don't know how anyone could see mild autism as a status
         | symbol?
         | 
         | I have no idea what I am, but I know I'm not "normal" - at
         | least as normal as most in America. I definitely think
         | different and require a strong filter to function in normal
         | society. Things like schedules and meetings overwhelm me
         | mentally, or at least are the most tiresome stuff I do where to
         | others they are trivial.
         | 
         | I also simply cannot push through "busy work" tasks even if I
         | see immense payout in the end. I dropped out of high school
         | without a plan simply because it was such a mental torture to
         | sit through useless classes every day I could trivially test
         | out of.
         | 
         | But, when I get an idea or project or goal in my head I am
         | utterly relentless to a level I don't see in many others.
         | 
         | When I was younger I could kind of patch through this and find
         | professional paths that worked alright with my quirks. Now that
         | I'm older and have a family and "real" career with 7am alarm
         | clocks/etc. I find life to be fairly unbearable from a mental
         | aspect.
         | 
         | I'd really like to know what causes this in me. I've always
         | been this way, to my extreme detriment, when I was younger I
         | would cry myself to sleep just wanting to be "normal". Is it
         | mild autism? ADHD? PTSD from childhood trauma? I dunno, but
         | it's both relationship and career impacting and having to build
         | your life around it sucks - knowing what your dealing with
         | sounds amazing to me.
         | 
         | I just can't imagine wishing putting life on "hard mode" like
         | this is on anyone, or anyone wanting to live it...
        
           | mattgreenrocks wrote:
           | Sounds like ADHD to me, FWIW!
           | 
           | Hope you find some tools and understanding in the coming
           | year.
        
           | hosh wrote:
           | I was hanging out with some friends. One of them, is not
           | neurotypical; she says her family were farmers. In that way
           | of life, it doesn't make demanda on executive functioning
           | like modern life does.
           | 
           | The other side too: there are plenty of thinkers and critics
           | of modernity to make a case that the modern way of life is
           | not really that healthy for neurotypical people -- or more
           | precisely, people with good, or great executive functioning,
           | even if they are rewarded the most by modern society.
           | 
           | I argue that, the hard mode is not necessarily your neural
           | wiring, but that our civilization and way of life is terribly
           | skewed.
        
         | emodendroket wrote:
         | Well, maybe that's what's happening. Or maybe a lot more people
         | have realized they're likely autistic than in the past. Getting
         | a diagnosis seems like a lot of trouble to be "trendy."
        
           | stathibus wrote:
           | The people trying to be trendy are not the people seeking
           | medical diagnoses in my anecdotal experience, but the
           | fetishization of mental disorders on the internet as social
           | media profile badges among young people is not helping
           | anything.
        
             | emodendroket wrote:
             | Sure. Probably not. But I think anyone who's booking an
             | appointment with a doctor at least have some basis for
             | believing they might meet the diagnostic criteria.
        
           | schleck8 wrote:
           | In a lot of cases on Tiktok they turn it into a quirky
           | "twitching" and saying cute things. You barely see anyone
           | where it doesn't come across adorably. Most of them are
           | faking it for attention.
        
         | dragonwriter wrote:
         | > actually autistic people such as my wife and I cannot get the
         | official diagnoses
         | 
         | If you don't have an official diagnosis, on what basis do you
         | claim to be any more "actually autistic" than the other
         | undiagnosed people that see themselves that way and are seeking
         | an official diagnosis?
        
           | kstenerud wrote:
           | Because I had a diagnosis in another country a decade ago.
        
             | zepto wrote:
             | That explains how you know about yourself, but it doesn't
             | explain how you know that the others seeking diagnosis are
             | not autistic.
             | 
             | It seems like a bad idea to stigmatize people for seeking
             | diagnosis.
             | 
             | There are plenty of stories of actually autistic people who
             | don't get diagnosed until much later _because the people
             | around them dismissed it or didn't support them_ because
             | their difficulties were not so visible.
        
               | kstenerud wrote:
               | Yeah, I'm one of them. But this is a real problem that
               | psychiatrists themselves complain about. Many have even
               | stopped doing autism diagnoses due to the sheer number of
               | people who come in over some simple behavioral tick and
               | demand their autism badge.
               | 
               | Until you experience it yourself, you can't understand
               | just how frustrating and demeaning it is.
        
               | nfkrk8j wrote:
        
               | zepto wrote:
               | It does makes sense, sadly.
               | 
               | I'm surprised people are seeking diagnosis just to have
               | the label. What actual benefits are they getting?
        
               | d0gsg0w00f wrote:
               | An excuse to not have to live up to standard societal
               | "norms". An explanation for why life seems hard.
        
               | tartoran wrote:
               | Life is indeed harder for some exactly for the reason
               | that societal norms are being imposed on them. Think
               | corporations and the norms they impose on all the
               | industries. I personally work hard to mask my differences
               | but it does take a lot more effort on my part. All these
               | efforts could have been used to be more productive and
               | efficient.
        
               | zepto wrote:
               | Why should people need an excuse not to live up
               | 'standard' societal norms?
               | 
               | In any case someone can be wrong about having autism, but
               | not wrong that they have a particular challenge that
               | others do not.
        
               | [deleted]
        
               | lookalike74 wrote:
               | Self-satisfaction that they are complicated people who
               | are 'working on themselves' because our medical system
               | affords it. It's now commonplace to hear people say
               | things like "It's my OCD acting up" when they don't have
               | obsessive compulsive disorder. And where does that go?
               | Think of the huge numbers of people who take ADD or ADHD
               | meds for 'neuro enhancement' while the larger swaths of
               | people who truly need treatment for those can't afford
               | it.
        
               | dexterdog wrote:
               | Would a lesser demand for those meds make them cheaper? I
               | would think it would be the opposite. Many of those meds
               | are available as generics as well.
        
               | intricatedetail wrote:
               | Isn't what he says actually proving he is on the
               | spectrum? The thought process sounds familiar.
        
               | csdreamer7 wrote:
               | > because the people around them dismissed it or didn't
               | support them because their difficulties were not so
               | visible.
               | 
               | Not to downplay any difficulties you or someone else may
               | have had, but a counter to this I am seeing some people
               | claim on twitter that they should just be able to state
               | their diagnosis without getting one and want
               | accommodations for it because of poverty or family would
               | look down on it.
               | 
               | This is very dangerous. People just assume they see a
               | characterization on TV and assume they have that.
               | Symptoms can be shared between different classes of
               | syndromes. ADHD and High Functioning Autism both can
               | share, on the surface, similar sensory processing issues,
               | anxiety, and obsessive thinking in my experience; but I
               | imagine the therapy and day to day accommodations that
               | one with ADHD needs is much different that one with
               | Autism (honestly I barely remember the therapy I got in
               | school and I am hoping more people can chime on this).
        
               | zepto wrote:
               | > Not to downplay any difficulties you or someone else
               | may have had, but a counter to this I am seeing some
               | people claim on twitter that they should just be able to
               | state their diagnosis without getting one
               | 
               | How is this in any way related to the comment you are
               | replying to? It seems like you misunderstood.
        
               | caddemon wrote:
               | Sure, but seeking diagnosis from a trained professional
               | should mean that the differences between those cases will
               | be detected. I acknowledge that IRL it is a messy field
               | and there is high variance in quality of practitioner.
               | But seeking help shouldn't be discouraged. It should be
               | up to the professionals to determine if someone actually
               | has "Autism" or "something else" (or nothing). And also
               | to do some amount of triaging! Criticism of the process
               | shouldn't generally be targeted at individuals seeking
               | help.
        
               | emodendroket wrote:
               | Well... isn't this part of it? A lot of people are more
               | or less satisfied with the coping mechanisms they've
               | established and don't really need to get a diagnosis
               | because they don't want further treatment. And I don't
               | think this is unreasonable, especially when treatment
               | mostly takes the form of helping you establish coping
               | mechanisms.
        
         | globular-toast wrote:
         | 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 wrote:
           | 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
        
           | 0xcde4c3db wrote:
           | The gluten intolerance thing is complicated by FODMAPs
           | (certain carbs that tend to ferment in the gut and to which
           | some people are especially sensitive for reasons that are
           | poorly understood). In practice, a gluten-free diet is often
           | also a low-FODMAP diet, but companies don't label their food
           | as "low-FODMAP", so people might make the switch, get actual
           | relief from actual symptoms, and assume that gluten was the
           | issue because they've never even heard of FODMAP sensitivity.
           | 
           | In my experience, the biggest issue with autism isn't so much
           | raw awareness or availability, but that almost none of the
           | "autism industry" caters to autistic people themselves. I
           | sometimes end up excluding phrases like "your child", "the
           | child", "the student", "my son", "my daughter" etc. from
           | searches for information about autism because there's just
           | _so much_ stuff that 's laser-focused on the concerns of
           | presumed-neurotypical people _around_ an autistic person.
        
           | TedDoesntTalk wrote:
           | 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.
        
             | zepto wrote:
             | There are different kinds of intolerance. Some people have
             | mild allergies to gluten, which is very different from
             | celiac disease.
        
             | 88913527 wrote:
             | A heavy portion of carbohydrates will raise and lower your
             | blood sugar levels. The crash is the tiredness. I would
             | nearly fall asleep at my desk after lunch if I had pasta,
             | and it took some time to make the connection.
        
               | watwut wrote:
               | It does not do that for me. As in, I don't get tired
               | after eating them.
               | 
               | So I think, it is quite likely that it does affect other
               | people differently. And it makes sense for them to cut
               | that stuff out while I don't have to.
        
             | mementomorti wrote:
             | Supposedly carbohydrates are a precursor to serotonin, so
             | getting sleepy from carbs could be expected. The
             | neuroscientist Andrew Huberman talks about this in his
             | podcast, eating low carb during the day can maintain
             | alertness, while eating carbs at night are useful to
             | prepare for sleep.
        
             | leephillips wrote:
             | Why do you think this has anything to do with gluten? Is
             | there perhaps another substance in bread and pasta that is
             | known to contribute to sleepiness after eating?
        
               | TedDoesntTalk wrote:
               | Good point. I don't really know if it is gluten. I hadn't
               | thought of that!
        
           | jl2718 wrote:
           | Interesting, but I think it has gone the other direction. It
           | seems to me that the autism diagnosis has been unilaterally
           | bad for rational people, and something like a green light for
           | exploitation by emotional people. I hear people calling
           | others autistic all the time to diminish their rational
           | points in an argument.
        
             | watwut wrote:
             | Autistic people are not more "rational" in the sense of
             | having better arguments.
        
               | jl2718 wrote:
               | That wasn't my implication. I was saying that the term is
               | being abused rather than just over-used as in celiac.
               | 
               | I don't claim to know what 'autistic' is, and I've never
               | heard a clear definition.
        
         | smoldesu wrote:
         | I really feel for you. My ex-boyfriend had Asperger's and was
         | similarly had issues applying for programs and getting regular
         | specialized medical/therapy visits because of how
         | sensationalized "neuroatypicality" had become. My heart sinks
         | whenever I read another article about how TikTok users decided
         | that nervous tics are not only popular, but deserve to be
         | imitated _and even diagnosed_ to feel legitimacy. I know
         | "social media bad" is a played-out theme these days, but it
         | really makes my blood boil imagining all the personal
         | development these people are missing out on by trying to
         | roleplay as a less-fortunate individual and record it for
         | online clout.
        
           | pessimizer wrote:
           | As individuals, they're probably not intentionally doing
           | this. Autism has just expanded to being so vague that people
           | think it may actually be the reason they're not happy, or the
           | reason they're secretly special. Walking into an autistic
           | identity by imitating people whom you know as autistic could
           | subjectively feel like dropping the pretenses of being normal
           | and expressing your true autistic self.
        
             | kstenerud wrote:
             | An autism diagnosis is actually not vague; it's only the
             | public perception of autism that is vague.
             | 
             | And I really would be quite happy with that if it weren't
             | for the fact that it's become popular and draws a ton of
             | unwanted attention now.
        
         | stared wrote:
         | I don't think that "autistic" is more of a "status symbol"
         | than, say, "gay".
         | 
         | And yes, it is wonderful that finally, autistic people get
         | their voice, their agency and are (sometimes) getting treated
         | as equals (even if different). Sadly, in some places,
         | "autistic" is still being used as an insult, usually based on a
         | harmful stereotype that autism is in any way related to the
         | lack of empathy.
         | 
         | I love that the world changes to at least consider autism as a
         | neurodivergence, even if not act upon that. Decades ago, it
         | wasn't the same. Being traumatized by noise level was my
         | problem, and even when I was in primary school, begging to let
         | me go to some more quiet place, I was not allowed. Other kids
         | were OK with the noise level, so why do I have a problem?
         | 
         | If a person needs some accommodation (say, reducing volume in
         | their workplace), it shouldn't matter if they are "truly
         | autistic" or "non-autistic, but highly oversensitive to noise".
         | And converse - if someone declares themself "mildly autistic"
         | but does not require special accommodations, they won't take
         | precious resources from you.
         | 
         | I wish you success with getting the necessary accommodations!
        
           | aspaceman wrote:
           | Probably will lose an account over this, but...
           | 
           | > I don't think that "autistic" is more of a "status symbol"
           | than, say, "gay".
           | 
           | Uh..aren't they both pretty big status symbols? Gay, queer,
           | disability, "this is indigenous land". If I work as a
           | disability officer, it's probably somewhat important my email
           | byline has a disability (or two, of three).
           | 
           | "I have to prove my status" (as someone who is a disability
           | officer) and "this person is a disability officer, they dont
           | even have a disability or their pronouns in the signature?!".
        
           | [deleted]
        
         | sircastor wrote:
         | I appreciate the frustration, but doesn't this mean that there
         | is a larger percentage of people trying to get help for mental
         | illness that otherwise would not be? Sure trying to get
         | diagnosed with something because it's trendy is ridiculous, but
         | it also means these people are talking to a professional and
         | may uncover other mental health concerns
        
           | kstenerud wrote:
           | No, it means there's a deluge of status seekers deceiving
           | themselves into thinking they're autistic and then clogging
           | up the system with their diagnosis requests. As I mentioned
           | in a sister comment, many psychiatrists who have autism
           | knowledge and training have stopped doing diagnoses because
           | of this, thus exacerbating the problem.
        
             | emodendroket wrote:
             | I have trouble understanding what status seeking ends would
             | be served by getting a diagnosis.
        
               | Zircom wrote:
               | You get to put it in your social media bio. That's all a
               | lot of them want. They don't want treatment, they don't
               | want to get better, they just wanna be able to tell
               | people they have it. It's a whole thing on Til Tok right
               | now.
        
               | emodendroket wrote:
               | Why do you need to waste your time and money when typing
               | "#actuallyautistic" into the box is free?
        
             | iab wrote:
             | What status is conferred by having autism?
        
               | kstenerud wrote:
               | No clue, but it's a thing.
        
         | mc32 wrote:
         | People crave attention. Some people and kids do what they need
         | to do to get attention. Look at the kids of Hollywood actors
         | and how their afflictions affect their behavior.
         | 
         | That's not to dismiss people who actually suffer from actual
         | differences, but some of it is the same old "rebellion" in
         | different clothing.
        
           | zepto wrote:
           | Ironically many autistic people seek to avoid or moderate
           | attention rather than _craving_ it.
        
           | ReactiveJelly wrote:
           | I wonder if craving attention is like being lazy.
           | 
           | I won't say I have ADHD, but I am very lazy. For my entire
           | life, I've found myself unable to just snap out of laziness
           | and choose to stop being lazy. I don't believe that I'm
           | selfishly lazy, because my laziness often causes obvious,
           | preventable problems for me, and I still can't find the
           | switch inside myself to turn it off.
           | 
           | I wish we could set aside the labels and say "I'm lazy and I
           | want to buy therapy to help me deal with being lazy." Maybe
           | there is also a reason people are not getting their need for
           | attention satisfied in whatever way they're supposed to.
           | 
           | I satisfy my need for attention by being good at programming,
           | and then talking to other programmers about programming. I
           | notice most people (general population) don't have any
           | particular skill worth showing off like I do. I don't know
           | what the actionable to fix that is, though.
        
             | 999900000999 wrote:
             | I'd take it a step further.
             | 
             | Instead of forcing people to fabricate various illnesses to
             | get performance enhancing medications, just make it over
             | the counter.
             | 
             | Antidepressants, over the counter.
             | 
             | ADHD drugs, over the counter.
             | 
             | Anti-anxiety drugs, over the counter.
             | 
             | As long as you're at least 21, you should have the right to
             | ingest whatever you want.
             | 
             | I personally wouldn't recreationally take any of the above,
             | but I think everyone has a right to make their own choices.
             | 
             | In America there's a billion dollar industry in convincing
             | everyone their broken. As far as I'm concerned I'm the best
             | me I can be and that's it.
        
               | guerrilla wrote:
               | The two of you sound like you're being dismissive of
               | mental illnesses that cause immense suffering and are
               | accusing people of just seeking attention or performance
               | enhancing drugs. That's pretty fucked up.
        
               | pxc wrote:
               | I have ADHD and mostly agree with GP's proposal.
               | 
               | ADHD medications don't really restore anyone to 'normal'.
               | They're a compensatory measure ('performance enhancer')
               | which is reserved only for some people mainly for bad
               | reasons (the war on drugs, lack of public and accessible
               | infrastructure for addiction treatment). They can be used
               | to help people with certain deficits meet certain demands
               | (typically productivity in work or school), but it's not
               | like they counteract ADHD. They help with some aspects of
               | the disorder (difficulty sustaining attention) and make
               | other aspects of the disorder (difficulty being
               | deliberate and judicious about when to switch tasks)
               | worse.
               | 
               | Gating them heavily behind many appointments and
               | preventing pharmacies from providing any refills makes
               | stimulant medications harder to access for people who
               | have ADHD, especially during bad times when it's
               | relatively poorly managed, which forms a vicious cycle.
               | (ADHDers sometimes refer to the total fees associated
               | with missed and late appointments and other such mishaps
               | as 'the ADHD tax', and it's not unusual for that sum to
               | exceed what an ADHD patient actually pays in copays,
               | especially when they're first trying to get things under
               | control.)
               | 
               | Expanding public access both to stimulant medication and
               | to addiction treatment could, imo, help more people live
               | better lives (including both ADHD patients and people who
               | don't have ADHD) and allow treatment of ADHD to focus
               | more on people who actually have ADHD , and on all of the
               | management aspects of living with ADHD (which are much
               | harder and collectively at _least_ as important as
               | medication).
               | 
               | (At the same time, under the policies the GP described, I
               | would continue to consult with a psychiatrist, because
               | adjusting psychoactive medications without professional
               | assistance is a stupid thing to do.)
        
               | 999900000999 wrote:
               | I'm not trying to be dismissive.
               | 
               | Their are tons of people who really do need medication.
               | 
               | Their are others who shop doctors to get the meds they
               | want.
               | 
               | For example, it's common for kids struggling in college
               | to get an ADHD diagnosis so they can study for longer
               | hours. As far as I'm concerned as long as your adult,
               | ingest whatever you want. But I don't think being unable
               | to study Chem for 12 hours a day is an illness.
               | 
               | Why stop adults from doing what they want.
               | 
               | No one stops you from rock climbing, even though that's
               | also dangerous.
        
               | faeriechangling wrote:
               | You miss two of the biggest points of formal diagnosis.
               | Legal rights to accommodation (IEP, workplace) and
               | getting insurance/healthcare money. If an autistic person
               | can't hold down a job or even live independently only
               | really being diagnosed offically will get them the
               | support they need. I've had to ask for accommodation to
               | have noise cancelling headphones in a certain workspace
               | where I was unable to really focus and having my demands
               | backed by legislation and a diagnosis made it much easier
               | to demand that.
               | 
               | On the point of medication though I largely agree, the
               | current system is insanely paternalistic. Like having
               | patients be forced to follow up with doctors about
               | medications they've been on for 5 years. However society
               | doesn't truly want to deal with the true costs of freedom
               | like somebody being able to easily legally acquire a
               | lethal dose of anxiety meds.
        
               | TimTheTinker wrote:
               | Nicotine is a very effective ADHD med, and it's available
               | over the counter. (No, I don't mean in tobacco.)
               | 
               | I have inattentive ADHD and Aspergers, and wearing part
               | of a nicotine patch for half the day really helps with
               | focus issues. (Any longer and I don't sleep well,
               | though.) I also take l-tyrosine and Avmacol, and drink
               | tea.
               | 
               | Since I started this regimen, my work performance went up
               | significantly and I got a promotion to a position I'd
               | been wanting for nearly a decade. My wife is also a bit
               | less upset with me and I feel subjectively more able to
               | think ahead and plan.
        
               | phil21 wrote:
               | I'm pretty libertarian on most political charts, but
               | offering benzos to people OTC seems like one of the last
               | things I'd be trying to legalize.
               | 
               | If we had no drug enforcement whatsoever, sure. But as
               | long as we do benzos may be one of the most dangerous
               | forms of substances we have short of straight up opiods.
        
               | darepublic wrote:
               | Ok sure but the notion that you are the best you you can
               | be is also originating in America too
        
               | schleck8 wrote:
               | I don't even know how to respond to this.
               | 
               | Do you think someone with depressive tendencies should be
               | able to overdose?
               | 
               | Please look up some of the package inserts. This isn't
               | some globuli smartie medecine you are talking about. It's
               | only legally available because the suffering caused by
               | social isolation is less bearable than some of the side
               | effects.
               | 
               | You can be happy if you only get malnutrition from them,
               | if you are unlucky you'll end up with chronic diseases or
               | cancer
        
               | [deleted]
        
             | drdec wrote:
             | > I wish we could set aside the labels and say "I'm lazy
             | and I want to buy therapy to help me deal with being lazy."
             | 
             | You can absolutely go to a therapist and say exactly that.
             | You won't be turned away. Generally therapists are more
             | interested in helping people versus labeling people.
        
             | Tijdreiziger wrote:
             | Are you sure it's not executive dysfunction, which can be a
             | symptom of ADHD and/or autism? Your first paragraph sounds
             | exactly how I'd describe myself before getting diagnosed
             | with autism.
        
           | nerdponx wrote:
           | It's more than just "attention", it's about feeling
           | individually special.
        
             | jl2718 wrote:
             | Perhaps that is a bigger need that ought to be addressed
             | separately instead of mixing it in with the mental health
             | industry.
             | 
             | This may be the domain of the matchmaking industry, which
             | basically exists to keep people feeling alienated.
        
           | thathndude wrote:
           | This is sadly all too common in the disabled community in
           | general.
           | 
           | I am not ignorant. I understand that many, perhaps the
           | majority, of disabilities that exist in the United States are
           | of the "invisible" kind.
           | 
           | However, the number of individuals who want to elevate their
           | very common, and human, difficulties in life, to a
           | "disability" is ridiculous. If I had to diagnose most of
           | these people, I would call them narcissists.
        
             | watwut wrote:
             | You are fighting trend of making up diagnosis by making up
             | diagnosis based on single assumed data point?
        
             | SamoyedFurFluff wrote:
             | Funny because narcissism can be debilitating. Narcissistic
             | personality disorder completely ruins a persons ability to
             | have even just one healthy human interaction or
             | relationship.
        
               | jl2718 wrote:
               | Actually that's interesting because logically it implies
               | that anybody seeking diagnosis is in fact impaired.
        
               | SamoyedFurFluff wrote:
               | I never mentioned that a narcissist would seek a
               | diagnosis for their disorder, only that their disorder
               | can be debilitating.
        
               | tartoran wrote:
               | Debilitating to themselves but infinitely more harmful
               | for the people they interact with. Maybe a diagnosis
               | would open them up to some mitigations on their behavior.
               | Narcissism personality disorder cannot be cured but
               | sufferers can learn to do less harm.
        
               | denton-scratch wrote:
               | Narcissism != Narcissistic Personality Disorder. A person
               | that lacks narcissism will have a lot of problems.
        
         | whalesalad wrote:
         | The notion that a neurotypical person exists is kinda silly.
         | What does that even mean? That's like saying this snowflake
         | here doesn't look like all the rest.
        
           | odiroot wrote:
           | > The notion that a neurotypical person exists is kinda
           | silly.
           | 
           | Supposedly they don't. Mental health professionals could
           | probably diagnose neuroses or psychoses in most adults.
        
             | cornel_io wrote:
             | In an N-dimensional system, as N goes up, every member in a
             | normally distributed population is increasingly likely to
             | be at an extreme along some dimension (this is related to
             | the fact that a hypercube's volume is disproportionately
             | close to edges and corners as dimensionality goes up). Even
             | if you just stick to the big 5 psychological breakdown, the
             | probability that someone is in the middle 80% on every
             | measure is only about 1/3, so it's not surprising that most
             | of us are a pretty big distance from normal overall.
        
             | whalesalad wrote:
             | I completely agree.
        
           | jeswin wrote:
           | > The notion that a neurotypical person exists is kinda
           | silly.
           | 
           | It's not at all silly. Not more than what's a good car. For
           | some, a Toyota model is a good car. For some, a Mercedes
           | model is a good car. A Dodge is a good car too perhaps. But a
           | boat is not a good car. A Formula 1 engine is also not a good
           | car.
        
             | whalesalad wrote:
             | Your statements are inexplicably linked to your own biases.
             | They are true for you, but only you.
             | 
             | An F1 car wouldn't work for a family with kids but I'd love
             | to daily one of those.
             | 
             | Nothing is absolute. Nothing is typical. An "NT" person in
             | Japan is not the same as one in the US. Where do you draw
             | the line? I posit you don't. There isn't a line. There
             | isn't a typical case. We are all so vastly different, often
             | in ways we cannot see or understand.
        
               | dasil003 wrote:
               | > _An F1 car wouldn't work for a family with kids but I'd
               | love to daily one of those_
               | 
               | Even assuming you could handle it (which is a huge
               | assumption), you can not drive an F1 around on city
               | streets. Ground clearance means will get hung up on the
               | first driveway or minor road work you run into.
        
               | whalesalad wrote:
               | Not with that attitude you can't.
        
               | jeswin wrote:
               | I didn't say F1 car.
        
           | kstenerud wrote:
           | Originally it was a way to differentiate between autistics
           | and non-autistics, and then suffered language drift. It would
           | probably have been better to just start off saying NA for
           | "non-autistic".
        
             | guerrilla wrote:
             | It didn't just mean Non-Autistic though, people who are
             | non-(autistic, bipolar, schizophrenic, adhd, etc, etc,
             | etc.) are NT.
        
           | beaconstudios wrote:
           | Given that diagnoses are based on physiological divergences
           | that make it difficult to function in society, a neurotypical
           | person is one who does not have these traits, which is most
           | people.
        
           | falcolas wrote:
           | If NT is a snowflake, someone with an actual disorder is a
           | piece of hail, or a speck of dust.
           | 
           | NT is the large part of the bell curve. It's called typical
           | because they share mental ability traits with over 80% of the
           | rest of humanity.
        
           | alvarlagerlof wrote:
           | Of course there are differences, but in terms of large traits
           | and behaviors over the majority of the population there are a
           | lot of similarities. Saying no one is NT hurts those who
           | absolutely aren't.
        
             | jl2718 wrote:
             | "No one is neurotypical"
             | 
             | "I'm not neurotypical. That statement hurts me"
             | 
             | "It seems that we are in agreement on your first statement.
             | Please help me understand how the second statement can be
             | true."
        
         | jl2718 wrote:
         | So, here's what that sounds like without the emotional content:
         | 
         | You are a self-diagnosed-autistic person (SDAP). You are upset
         | that other SDAPs are consuming resources intended for 'actual'
         | autistic persons. You would prefer to consume those resources
         | yourself. You are trying to get a professional diagnosis as
         | 'autistic'. You have thus far been unsuccessful.
         | 
         | Are those the facts which you intended to convey?
         | 
         | People tell me I'm autistic all the time. I do not accept this
         | label. I will not agree to the diagnosis, treatment, or aid of
         | any sort. I don't care if it's in a book. I call it
         | rationality. I see information where other people see emotions.
         | I realize that this is a deficit in relating to many other
         | people and the world at large. If I were to change one thing to
         | adapt better, it would be stronger recognition and avoidance of
         | emotional people, and closer connection to rationals. Emotional
         | people can be very convincing to get what they want from
         | rationals.
        
           | kstenerud wrote:
           | It is an emotional issue for us, because it's effectively a
           | DDOS of the psychiatric services that is preventing us from
           | getting the support we need, and preventing a number of other
           | things that we could otherwise do.
           | 
           | And no, we are not self-diagnosed.
        
             | [deleted]
        
             | jl2718 wrote:
             | Be specific. What exact resources do you want access to?
        
               | kstenerud wrote:
               | Oh, I'm sorry. I didn't realize that I was answerable to
               | you.
               | 
               | Do you treat all marginalized groups this way?
        
               | jl2718 wrote:
               | I don't think I have an adequate understanding of how you
               | perceive yourself to be treated.
               | 
               | But, to attempt, I'd first say that I don't 'treat'
               | groups. I interact with individuals. Also, I don't know
               | exactly what 'marginalized' means, but that sounds like
               | something having to do with the way that others have
               | treated those individuals.
               | 
               | So I'd probably say, on an individual basis, I think I
               | treat most people the same. I tend to have a penchant for
               | reaching out to people who I observe to have been ignored
               | or mistreated by others because I find that they are
               | often very happy to be treated normally, and make great
               | friends. I'm not really a big fan of interacting with
               | anybody that demands to be treated differently, if that's
               | what you mean.
               | 
               | So, yes, I think I'd say that I probably do.
        
               | tomrod wrote:
               | This is an internet forum with strangers. For the record,
               | demanding personal details is taboo.
        
               | pbhjpbhj wrote:
               | They didn't demand, they asked. If you seek to represent
               | your position on internet forums then you're going to
               | need to tell people your position.
               | 
               | As access to specific resources is a central part of the
               | complaint it seems perfectly reasonable to request more
               | details. They can be general, like "I can't book a
               | psychiatrist" or "I need specific drugs that are in
               | limited supply".
        
               | Dwood023 wrote:
               | Since they're a stranger, what's taboo about it? I can't
               | imagine anyone being doxxed by the additional information
               | requested...
        
           | TedDoesntTalk wrote:
           | > I realize that this is a deficit in relating to many other
           | people and the world at large
           | 
           | I'm not sure why, but I keep coming back to your comment,
           | even an hour or more after you posted it. I feel sympathy for
           | your lack of balance. I am reminded of these Supertramp
           | lyrics:
           | 
           | When I was young, it seemed that life was so wonderful
           | 
           | A miracle, oh it was beautiful, magical
           | 
           | And all the birds in the trees, well they'd be singing so
           | happily
           | 
           | Oh joyfully, playfully watching me
           | 
           | But then they send me away to teach me how to be sensible
           | 
           | Logical, oh responsible, practical
           | 
           | And they showed me a world where I could be so dependable
           | 
           | Oh clinical, oh intellectual, cynical
        
             | jl2718 wrote:
             | Thank you! I had only heard this from Scooter, and didn't
             | know the original source.
             | 
             | https://youtu.be/4YxTa1AUqps
        
               | TedDoesntTalk wrote:
               | Wow, that version and the original could not be more
               | different:
               | 
               | https://youtu.be/low6Coqrw9Y
               | 
               | I don't hear the remake using anything but the first
               | verse of lyrics from the original.
        
         | mam4 wrote:
         | Im pretty sure all the other ones you talk about refer to them
         | selves as "actually autistic people".
        
           | kstenerud wrote:
           | No. They don't. That's the whole purpose of this "actually
           | autistic" movement. And the infuriating thing is that it
           | shouldn't even be necessary.
        
         | stareblinkstare wrote:
         | >"mild" autism has become a trendy status symbol
         | 
         | [Laughs in HN]
        
       | globular-toast wrote:
       | 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.
        
         | netizen-936824 wrote:
         | I think what's interesting is that a spectrum can be generated
         | from the combination of a series of gradients.
         | 
         | Consider different regulation in specific biochemical pathways
         | to be individual gradients. These parameters, when combined,
         | can represent many different unique states that exist on a
         | spectrum.
        
           | mannykannot wrote:
           | This article is not about spectra and gradients in general:
           | it is about a specific situation where conflating the two
           | creates misunderstanding. In this case, a categorical
           | (spectrum) diagnosis should not be regarded as a measure of
           | severity.
        
             | netizen-936824 wrote:
             | I'm perfectly aware, but I'm providing an example of how
             | both concepts could reasonably be applied to not only
             | autism but mental disorders in general
        
         | jdowner wrote:
         | 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.
        
           | pessimizer wrote:
           | Some people are a little black. Not everything should operate
           | by the one-drop rules of American slavery. I don't think many
           | people are saying "everyone" is a little autistic.
        
           | nzmsv wrote:
           | 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 wrote:
             | My understanding is that the normalization doesn't mean
             | subsumption but that the differences are normal and
             | accounted for by default. For example, m/f bathrooms are
             | largely considered normal to account for two different
             | gender identities (this is extremely simplified; I'm aware
             | that non-binary people exist but they are still not
             | considered "normal" largely and are not accounted for by
             | default). Very few people are running around saying all men
             | are a little bit women so why do we have separate
             | bathrooms, clearly this is perpetual exclusion.
        
             | jdowner wrote:
             | Being able to better communicate with one another is
             | obviously a good thing. The point is that the language
             | being used isn't facilitating that and that is why the
             | autistic community has pushed back on it. So it seems to
             | me, that it is now on the neurotypical community to listen
             | to that feedback.
             | 
             | Also, autism isn't just about social quirks. These are
             | people with different neurophysiology who experience the
             | world in a different way. It is not simply a matter of
             | holding a different opinion or learning a particular
             | behavior. This is not something that can be 'normalized' by
             | talking through it.
             | 
             | The autistic community is largely against gate keeping, and
             | are quite accepting of people who are self-diagnosed. This
             | is not about not being 'properly' autistic, but about
             | having a voice. Being a part of society for the person you
             | are. To not having the challenges you face in a world
             | defined by and for neurotypical people being trivialized.
        
             | watwut wrote:
             | > magine a white supremacist who learns they had a Black
             | ancestor. That would transform their whole world view.
             | 
             | Afaik, it does not. Nazi who found out they have Jewish
             | ancestors did not concluded being Jew is fine. They
             | continied to hate Jews and found whole thing unfair.
             | 
             | Self Hate is a thing, ignoring evidence is a thing and both
             | can make you even more dangerous.
        
             | licebmi__at__ wrote:
             | >Imagine a white supremacist who learns they had a Black
             | ancestor. That would transform their whole world view.
             | 
             | Never underestimate the mental gymnastics of racism.
             | https://en.wikipedia.org/wiki/Mischling_Test
        
       | lr4444lr wrote:
       | 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 wrote:
         | > 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 wrote:
           | 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 wrote:
           | 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.
        
       | champagnois wrote:
       | 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.
        
         | gallegojaime wrote:
         | 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.
        
       | StephenJGL wrote:
       | 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.
        
       | epgui wrote:
       | 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 wrote:
         | 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 wrote:
           | Even the color spectrum depicted in the article misses
           | magenta, due to it being a color made of two frequencies, not
           | just one.
        
           | epgui wrote:
           | 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 wrote:
             | 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.
        
           | robobro wrote:
           | Goethe vs Newton all over again!
        
         | thanatos519 wrote:
         | It goes from less-something to more-something as frequency but
         | more-something to less-something as wavelength. "colour" is a
         | mix of power at each frequency, and everyone has different
         | retinas, different optical cortices, and different cultural
         | contexts.
         | 
         | That this causes them such confusion makes it difficult for me
         | to empathize with muggles.
         | 
         | "Who in the rainbow can draw the line where the violet tint
         | ends and the orange tint begins? Distinctly we see the
         | difference of the colors, but where exactly does the one first
         | blendingly enter into the other? So with sanity and insanity."
         | -- Herman Melville, Billy Budd
         | 
         | What I love about this quote is that violet and orange are so
         | far apart in the rainbow.
        
       | baby wrote:
       | All I'm reading is that autism is a stupid categorization. It's
       | too arbitrary and coarse.
        
       | test0account wrote:
       | I don't mind the assumptions. I don't think we are unfairly
       | characterized.
       | 
       | What we are is unfairly treated most of the time.
        
       | monetus wrote:
       | 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
        
       | bschne wrote:
       | 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-
       | psychiatri...
        
         | stared wrote:
         | 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 wrote:
       | 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 wrote:
         | 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 wrote:
         | 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 wrote:
         | > "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".
        
       | psychoslave wrote:
       | >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.
        
       | psyc wrote:
       | 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.
        
       | dsizzle wrote:
       | > 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.
        
       | pxc wrote:
       | 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 wrote:
         | 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 wrote:
           | 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.
        
       | joenathanone wrote:
       | 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.
        
         | sidlls wrote:
         | I don't agree with this take. I have social anxiety and
         | difficulty empathizing with people in certain respects. One of
         | my children who is diagnosed has these two issues _and_ some
         | sensory and dexterity issues, issues with adapting to changing
         | circumstances, and a very limited ability to regulate their
         | responses to frustrating situations to the point where they'll
         | go on rants with crying and anger that is white hot (a
         | "meltdown"). This child is what is commonly called "high
         | functioning," though: anybody who has not observed them long
         | enough could easily only ever see one of these behaviors
         | /traits, and the child is in a regular classroom and has been
         | identified as quite gifted in some subjects.
         | 
         | I'm not on the spectrum, and would never claim "I'm a little
         | autistic." I might have before I had the kid, but definitely
         | not now. My kid's autism symptoms are really minor compared to
         | many, but it's so far beyond the kinds of quirks you're
         | referring to as to be obviously and starkly different.
        
         | 63 wrote:
         | As an autistic person, I usually find people saying that
         | they're "a little autistic" without really being autistic a
         | little demeaning. They're trying to tell me that they
         | understand, I get that, and I genuinely appreciate the attempt
         | at connection. However, I literally have this label because I
         | am different and they cannot really understand what it's like,
         | so it just comes off like they're trying to tell me the way I
         | feel about something doesn't matter or like my troubles aren't
         | real because they claim to experience something similar (even
         | though they literally don't because they're not autistic).
        
           | torstenvl wrote:
           | I recommend reading up on what the psychologist John Gottman
           | calls a "bid for connection," specifically about not taking
           | it at face value but recognizing it as a genuine attempt at
           | building rapport.
           | 
           | Nevertheless, you aren't alone in interpreting such bids in a
           | negative way. I sometimes ask people, especially defense
           | clients, straight up: "Are you a person who finds comfort in
           | discussing times when others have faced similar problems,
           | even if there are still a lot of differences? Or would that
           | make you feel that you weren't being heard as an individual?"
        
         | bjourne wrote:
         | Maybe it's different for people with AD(H)D than Asperger's,
         | but I don't get it. There is nothing good with having a brain
         | disability. Aspie pride is about as dumb as people in
         | wheelchairs being "proud" of being born without functioning
         | legs. And to Homo Sapiens the brain functions I lack is almost
         | as important as walking ability. Asperger to me hasn't meant "a
         | little quirky" like Sheldon Cooper. It has meant total
         | inability to "get" other people and their intentions. Asperger
         | may have made me an awesome developer but if there was a pill
         | or treatment to cure it, I'd take it in a heartbeat. People
         | calling Asperger their "superpower" is laughable.
        
           | renewiltord wrote:
           | People think "High-functioning Autism" means they're
           | savants... Some terminology choices can yield comical
           | misinterpretations.
        
           | rkk3 wrote:
           | > Maybe it's different for people with AD(H)D than
           | Asperger's, but I don't get it. There is nothing good with
           | having a brain disability.
           | 
           | So what you want people who aren't average to consider
           | themselves inferior? I don't know why people wouldn't be able
           | to find good things or positives from a disability.
           | 
           | > People calling Asperger their "superpower" is laughable.
           | 
           | Asperger's looks pretty over-represented in the richest
           | people in the world. Dyslexia is also over-represented. Bill-
           | Clinton, Obama, Steve Jobs, Jeff Bezos, Larry Ellison were
           | all not raised by their biological fathers. Plenty of other
           | examples. Adversity can be a super-power.
        
         | blueflow wrote:
         | > Also this "Having sensory processing issues doesn't make you
         | "a little autistic." It makes you someone with sensory
         | processing problems.
         | 
         | This filing-people-into-groups thinking is something that i see
         | so often here on HN and I'm so bothered by it.
         | 
         | For me, i do what i feel i want to do, and make up names and
         | concept for it afterwards if it seems necessary. Sometimes i
         | don't have words for what i am doing. Its a lot of
         | improvisation.
         | 
         | For some people, this process seems to be reversed... Like as
         | if they need to be "validated" by external concepts, otherwise
         | they don't do some things. And they feel relieved when they
         | have a diagnosis like "autism". Not having a name/explanation
         | for it seems like a barrier to them.
         | 
         | I don't know what i am observing here, but I'd like to know.
         | Maybe this is like the inner-monologue thing, where humans
         | vastly differ in some regard but are unaware of it.
        
           | TOGoS wrote:
           | Similar. I think because I've always been "kind of weird",
           | and eternally baffled at so-called "normal" people expecting
           | everybody to be like them. Like, we're allowed to be
           | different, right? In practice you'll be ostracized. Unless
           | you get an official diagnosis. Then you're allowed to be
           | weird. Thanks for "accommodating" me, society. But how about
           | we just don't structure it in such a stupid way in the first
           | place? "No, you weirdo, stop being unreasonable. Go back to
           | watching football."
           | 
           | That said, labels can be useful. If other people that are
           | similarly weird have found some tactic (or substance) useful,
           | you might also find it useful. For me, "aha, it's ADHD!" was
           | a huge breakthrough, because it gave me a general direction
           | to search for answers (and meds).
           | 
           | So, uh, to summarize: labels can be useful, but I wish
           | society was not structured in such a neurotypical-centric
           | way. Just let people be different. e.g. If someone says "I
           | don't work well in an open-plan office", just believe them.
           | They shouldn't need a doctor's note.
        
           | tonyedgecombe wrote:
           | >Like as if they need to be "validated" by external concepts,
           | otherwise they don't do some things.
           | 
           | I don't know, I could imagine struggling with their life and
           | blaming themselves for it. A diagnosis might well provide
           | some relief from that.
        
         | kstenerud wrote:
         | > 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.
         | 
         | It's like saying "I'm actually 1/16 Cherokee!" as a form of
         | group-identifying empathy. Note: It is not.
         | 
         | > I work in this field and I dislike takes like this, where
         | individuals think they can speak for a whole group.
         | 
         | People like us have been trying desperately to get people who
         | "work in the field" to understand us for decades, with little
         | success. This is but one example.
        
           | Lhiw wrote:
           | I say to myself I'm a little bit autistic. But I'm not really
           | sure.
           | 
           | I fit the profile of person one in the article.
           | 
           | The reason I'm wondering / even looking at autism is because
           | the meds for my ADHD just make everything worse even at
           | really small doses and I don't really know what to do.
        
             | TOGoS wrote:
             | Yeah, there seems to be a bit of overlap between ADHD
             | symptoms and being anywhere other than the extreme
             | neurotypical end of the autism spectrum.
             | 
             | As an ADHD person, one thing that has helped me a lot is
             | listening to ADDitude Mag podcasts[1]. Listening to people
             | who are experts in the subject and are ADHD themselves has
             | been quite validating. Like, yeah, we're not stupid, but
             | the normies sure make us feel that way sometimes, huh! I
             | recommend the ones with Ned Hallowell, especially.
             | 
             | So maybe you're not ADHD, or maybe you are but that's not
             | your main problem. There are probably similar podcasts or
             | forums or communities for people that are 'weird' or mildly
             | disabled in other ways. I guess I'm trying to be helpful
             | because I relate, and I know how alienating it can be, but
             | the best I can come up with is to quote Timothy Leary and
             | say "find the others." Easier said than done. You can talk
             | at me if you want. :)
             | 
             | [1] A collection of them I generated from some RSS feed:
             | http://www.nuke24.net/projects/Playlister/?playlist-
             | uri=urn:...
        
           | Forge36 wrote:
           | There's a difference between "1/16th Cherokee" and "growing
           | up on a reservation with grandfather".
           | 
           | The full context on the conversation is important.
           | 
           | In this conversation: I'd like to know more on how to define:
           | people like us.
        
           | joenathanone wrote:
           | For better or worse, I would never know unless you told me,
           | and to use your metaphor, the very fact that you can socially
           | interact here on HN at all more or less puts you in that camp
           | of being 1/16 Cherokee and then stating "people like us".
           | 
           | Of the individuals I interact with on a daily basis, some
           | can't vocalize or interact in any meaningful way beyond
           | grunting, but of the ones that could, most would likely end
           | up banned or shadow banned if they tried socializing on HN.
           | 
           | I don't discount your experience in the least, but for the
           | individuals I personally know, work for and with, one of the
           | most valuable things they can receive is someone taking the
           | time to empathize with them. Most people don't and they end
           | up having no or very few friends and/or otherwise being
           | social outcast.
        
           | Nasrudith wrote:
           | The "1/16 Cherokee" example seems to be clumsy adaptation of
           | social techniques for trying to connect via commonalities.
           | The intent counts for a bit. It certainly isn't effective or
           | pleasing to the target, but it is an attempt to bridge and
           | group-identify. That they aren't unconnected strangers with
           | no link.
           | 
           | Arguably this a symptom of other conceptual issues (like
           | needing genetic connections for kinship as opposed to
           | universals). But it is a step of progress and a reason to
           | educate rather than shun or scorn.
        
         | manwe150 wrote:
         | I assume 'empathize' is meant there?
        
         | whalesalad wrote:
         | 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.
        
           | netizen-936824 wrote:
           | Honestly this is a massive problem in the psychological
           | sciences. Most of the disorders are just collections of
           | symptoms without any solid research tying those symptom
           | collections to concrete issues in neurological circuits or
           | biochemical signaling pathways. Work is being done to fix
           | this, but its currently an absolute shit show in my opinion
        
             | guerrilla wrote:
             | > Most of the disorders are just collections of symptoms
             | without any solid research tying those symptom collections
             | to concrete issues in neurological circuits or biochemical
             | signaling pathways.
             | 
             | This isn't true for autism, ADHD, bipolar or schizophrenia
             | since some biological mechanisms are understood (even if
             | these labels aren't perfect), so what are you talking about
             | and what do you base it on?
        
               | albedoa wrote:
               | Maybe you should start by telling us what you are talking
               | about.
        
               | whalesalad wrote:
               | The illnesses you mentioned are misdiagnosed _all the
               | time_. DSM-V is a joke and so are most mental health
               | professionals. They're just fitting a list of symptoms to
               | another list of symptoms based on what amounts to
               | Levenshtein distance.
               | 
               | Anyone can be diagnosed with ADHD these days. And for all
               | intents and purposes the patient might have 9/10
               | symptoms. But do they really have ADHD or is it something
               | else? We don't even have the capacity to figure that out
               | right now because our understanding is so limited.
        
               | bratwurst3000 wrote:
               | True. A friend of mine got diagnosed with adhd and it was
               | like 15 questions( mostly the same kind) et voila adhd.
               | 
               | I got adhd since a kid and i the test was the same. Only
               | they asked the parents and not me. But i think i rly got
               | it...
               | 
               | Its like the south park episode where kids got diagnosed
               | because the bible bored them...
        
               | novok wrote:
               | If you want to, you can spend 2 or 3 days and $5000 to
               | get properly assessed by a neuropsycholoist to figure out
               | what your issues actually are. That is laborious, time
               | consuming and doesn't fit the 15 minute doctor visit
               | medical billing model, so it comes down to a 15 question
               | screener test for many.
        
               | meiji163 wrote:
               | Not only is the diagnostic framework a joke, it's the
               | basis of immense amounts of iatrogenic harm [0]
               | 
               | [0] "Anatomy of An Epidemic", Robert Whittaker
        
               | DarylZero wrote:
               | And if you think diagnoses are bad, wait 'til you see
               | what passes for treatments.
        
               | MrMan wrote:
               | probably lying to get amphetamines, which enhance
               | performance
        
               | netizen-936824 wrote:
               | Our knowledge of schizophrenia is primarily based on what
               | medications alleviate the symptoms, this is something I
               | learned from pharmacology and biopsychology textbooks.
               | Same with ADHD. Autism, I'm not aware of any solid
               | research pointing to overarching mechanisms so please do
               | cite some if you are. I would love to read it.
               | 
               | Just because some symptoms are alleviated by a medication
               | does not mean that must be related to the underlying
               | mechanism. Many times medications are altering symptoms
               | far removed from the initial cause.
               | 
               | Under the "mechanism" section in wikipedia there are
               | multiple theories discussed:
               | https://en.m.wikipedia.org/wiki/Schizophrenia
        
               | Nasrudith wrote:
               | A steelmanned accurate take is that they are not
               | biologically objectively confirmable. Which is more of an
               | actual problem in psychiatry than other areas of
               | medicine. Looking at say past x-rays and noting a tumor
               | that went uncommented upon at the time on malpractice
               | lawsuits for instance.
               | 
               | But notably also not done the majority of time in
               | practice. It is seldom done to the level of say verifying
               | your flu strain, let alone other more expensive and/or
               | invasive tests which do not serve the patient's medical
               | needs.
        
             | whalesalad wrote:
             | Yes! Exactly! Is there a name for this phenomenon?
        
               | epgui wrote:
               | I don't think it's the answer you're looking for, but
               | it's basically how I think about the scientific process:
               | we ask all the wrong questions when we have the wrong
               | mental models and the wrong vocabulary. But as our
               | understanding improves, and as our vocabulary begins to
               | map to the real world better, we start asking better
               | questions and this unblocks science from progressing.
        
               | netizen-936824 wrote:
               | This is why its important for us to consider a broad
               | variety of perspectives on a problem and to change our
               | own perspectives. It's a complicated problem and its easy
               | to get stuck on something that seems "almost kinda right
               | enough that it sorta works"
        
               | whalesalad wrote:
               | Laying the tracks while the train travels down them.
               | Absolutely agree with this. Some of us are better at
               | connecting the dots than others. More literal/concrete
               | people get stuck in the published or established wisdom
               | and have a tough time thinking "outside the box"
        
           | 323 wrote:
           | Maybe they should split it into more specific categories.
           | 
           | Like we don't just say "you have heart disease".
        
             | netizen-936824 wrote:
             | 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
        
               | caddemon wrote:
               | It's sort of a self reinforcing problem though - a lot of
               | studies trying to understand biochemical mechanisms are
               | taking our existing subpar labels at face value. They
               | generally don't have the sample size to get remotely
               | close to detection of the probably double digit distinct
               | disorders that are making up the "Autism" group. And that
               | is further complicated by natural heterogeneity found
               | even in control groups.
               | 
               | Personally I think coming up with better behavioral
               | characterizations will be an important intermediate step
               | to identifying bio mechanisms, because it leads to much
               | more tractable lines of questioning. For example, we
               | could be quantifying symptoms like rigidity and
               | repetitiveness of movement, sleep quality, sensitivity in
               | different sensory domains, etc. - which should be
               | increasingly feasible to do at scale these days.
        
               | whatshisface wrote:
               | That's a good idea but nobody knows the mechanism for
               | most brain diseases. When they know they say something
               | like "you have a lesion in your right parietal lobe."
        
               | netizen-936824 wrote:
               | Yes but that is why researchers are actively working to
               | change this. We are aware of the problems, but the system
               | we're dealing with is large and complex.
               | 
               | It takes time and effort to learn about the mechanisms,
               | just because we don't know right now doesn't mean we
               | never will.
        
         | hosh wrote:
         | I don't work in the field and I am not autistic. I have a
         | daughter who is, and just recently spent holiday times with a
         | family that also has members who are.
         | 
         | I don't think neurotypical people can really empathize. I am
         | saying this as someone who have had altered states of
         | consciousness with psychedelics. It is not the same thing, but
         | it was a different enough experience that I know that people
         | who have not taken psychedelics or have had visionary
         | experiences, cannot really relate to my experiences with
         | altered states of consciousness, and those attempts at
         | "empathizing" are shallow.
         | 
         | There are two kinds of things when we talk about empathy. One
         | is the kind of empathy that comes from shared experience, and I
         | doubt neurotypical people can really have an inkling of what it
         | is like without having experienced altered states of
         | consciousness.
         | 
         | The other kind of empathy is where one recognizes that the
         | other person is suffering. The reasons and circumstances by
         | which someone suffers is unique to the individual person, but
         | what is shared universally is that each person has suffered.
         | 
         | Rather than empathizing with someone by saying they are a
         | "little" or "a lot" autistic, it's more precise to look at the
         | person before you, in the present moment, and share the
         | experience of suffering.
         | 
         | If we are talking about therapy, the author makes a great case
         | for clinical outcomes being biased towards mitigating the
         | impact an autist has on other people, and not the impact to the
         | autist herself. The whole point of explaining the spectrum like
         | a spectral signature rather than a gradient is to have a better
         | framework for helping people.
        
           | netizen-936824 wrote:
           | I think your perspective is valuable. You so try to empathize
           | but you also realize the limitations of your own perspective
           | which, in my opinion and observations, is light years ahead
           | of most people who think they _do_ have the ability to
           | empathize and consider radically different perspectives than
           | their own. In reality most people have an incredibly
           | difficult time considering different thought processes.
        
       | deltahotel wrote:
       | many thanks for this article. it helps me understand my son
       | better and react better when people ask me about his autism
       | level.
        
       | armchairhacker wrote:
       | 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.
        
       | VampireWillow wrote:
       | 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.
        
       | rightbyte wrote:
       | 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 wrote:
         | 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."
        
           | loopz wrote:
           | 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 wrote:
             | 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.
        
               | loopz wrote:
               | 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 wrote:
               | 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.
        
               | loopz wrote:
               | 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.
        
           | emodendroket wrote:
           | 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 wrote:
             | 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 wrote:
               | 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 wrote:
               | 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 wrote:
           | > "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.
        
       | fallingfrog wrote:
       | 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.
        
       | ok_dad wrote:
       | 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 wrote:
         | 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.
        
           | emodendroket wrote:
           | 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.
        
             | renewiltord wrote:
             | Yeah, I don't know what this is about. You can buy stuff
             | with gluten in it. But I can kind of see it as if you had
             | 99 things that meet your preference and 1 thing that
             | doesn't, then when you move to a world with 900 things that
             | meet your preference and 100 that don't, you see that as 9%
             | of things being displaced rather than you having additional
             | 801 things.
             | 
             | In fact, I shall call this the Percentage Bias. The
             | Percentage Bias is when you allege displacement by looking
             | at alterations in ratios without looking at alterations in
             | total amounts.
        
           | BadCookie wrote:
           | I mistakenly thought that I was better off not eating gluten
           | because I felt much better after going gluten free. I am now
           | fairly sure that the real benefit I experienced came from
           | reducing my sugar intake. Cutting out gluten tends to cut out
           | sugar in tandem: breakfast cereal, cookies, cake, and so on.
           | I wonder if this explains why so many people who aren't
           | celiac think they see a big benefit from a gluten-free diet.
           | Lots of Americans are flirting with diabetes if they aren't
           | already diabetic. (And lots of sugar isn't great for a person
           | even if they are completely healthy.)
        
             | carlmr wrote:
             | I'm pretty sure that's it. But good luck explaining this to
             | a believer.
        
           | caslon wrote:
           | 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-
           | seri...
        
             | danuker wrote:
             | 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/ho
             | m...
             | 
             | https://www.fao.org/worldfoodsituation/foodpricesindex/en/
        
           | alisonkisk wrote:
        
         | jbverschoor wrote:
         | And thereby marginalizing a real problem.
         | 
         | Everybody these days is a programmer.
         | 
         | Everybody is an investor.
         | 
         | Everybody is a trader.
         | 
         | Everybody is an entrepreneur.
         | 
         | No thank you
        
           | ok_dad wrote:
           | Open the gates, I say. Everyone can be anything.
        
         | md224 wrote:
         | I think it's actually the opposite. Because so many people
         | think they have a gluten allergy, restaurants offering gluten-
         | free options don't feel the need to take it so seriously.
         | 
         | "So what if there's a tiny amount of gluten contamination...
         | it's not like these people are going to die, right? They're
         | probably just on a fad diet."
         | 
         | Diluting the meaning of a medical condition is not a good
         | thing.
        
           | caddemon wrote:
           | According to my friend with Celiac, it's a bit of both. She
           | definitely has to do more research on any new restaurant
           | because there are a number of places out there that do not
           | take Gluten free seriously anymore and in particular will not
           | be careful about cross contamination even if the issue is
           | emphasized. But on the other hand there are also many
           | restaurants now that do have a variety of legitimate Gluten
           | free options. So it's probably a double edged sword.
        
             | emodendroket wrote:
             | And it's not just restaurants -- the grocery stores are
             | loaded with options that they didn't previously have.
        
             | xahrepap wrote:
             | I have celiac. This is my experience. I am grateful for how
             | common eating gluten free is, no matter the cause. But a
             | lot of restaurants have started saying "gluten free
             | friendly" instead of "gluten free". The communities online
             | are great and finding the best places to eat.
             | 
             | Grocery food is way better than it was even just 10-20 year
             | ago. It's great.
        
           | s_m_t wrote:
           | Unless a kitchen is specifically set up for preparing food
           | completely gluten free without cross contamination then there
           | is going to be cross contamination. Most kitchens simply
           | aren't big enough. It isn't a matter of taking it seriously
           | and any kitchen that knows what they are doing will let you
           | know they can't make a gluten-free guarantee.
        
           | Eldt wrote:
           | If that's how they treat allergens in their food then they
           | deserve to lose their licenses.
        
             | Shared404 wrote:
             | All of my experience with working at or with restaurants
             | suggests they deserve to lose their license, but this issue
             | is worse than most.
        
               | dwmbt wrote:
               | heavily agree with this. completely orthogonal, but most
               | people i know that have worked in a kitchen (myself
               | included) have, at some point, mentioned their initial
               | shock with how disturbingly gross kitchens are. after
               | reading orwell's down and about in london and paris, i
               | suppose things have gotten much better, but still, i
               | don't think most customers understand this. he goes into
               | some great rants about this, if it's of any interest to
               | you.
        
               | Shared404 wrote:
               | > most people i know that have worked in a kitchen
               | (myself included) have, at some point, mentioned their
               | initial shock with how disturbingly gross kitchens are.
               | 
               | Same here, this matches my experience exactly.
               | 
               | Thanks for the pointer, I'll check it out!
        
         | skim_milk wrote:
         | As a neurotypical, I hear all the time from others (especially
         | coworkers in the field of IT) saying they're "a little
         | autistic", at least to me these people clearly have done some
         | research to conclude they can relate in some dimensions to
         | clinical autism, not a confabulation made in-the-moment as a
         | desperate and failed attempt to relate to someone who has to
         | actually live with ASD. It really does linger in the mind of
         | these people and they want to let others know about this
         | important factoid about their personality as much as any other
         | important point about them and their past. I agree, let them
         | have it, but we should also have a social script when talking
         | with people who live with ASD so we don't have individuals
         | getting upset when the goal might have actually been to be
         | vulnerable and open to sharing about themselves.
         | 
         | Also, it appears all experts in the field believe ASD comes
         | from assortive mating (people with similar genes that affect
         | social function tend to come together). There should be
         | resources for these people who think they're "a little
         | autistic" and have clearly researched the topic to determine if
         | it's safe for them to have children or if adoption is more
         | appropriate. It's an unfortunate state of affairs but the
         | experts are pointing to ASD as preventable, if you think you're
         | almost on the spectrum and married to someone similar to
         | yourself, consider researching the topic of "autism and
         | assortive mating".
         | 
         | The more open we are to talking about being "almost on the
         | autism spectrum" and the more informed we are the better we all
         | are!
        
           | Der_Einzige wrote:
           | I'm actually quite worried about this problem as someone who
           | had an Asperger's diagnosis as a child. I've heard that there
           | are medical procedures to allow one to specify which egg they
           | want fertilized and where one can choose an egg which is
           | certain to not have genetic disorders we can test for. Is
           | autism something we can test for in the womb? If so, than
           | this shouldn't be a problem for those with money (and my
           | understanding is that the procedure I am describing costs
           | about 20K).
           | 
           | More broadly, I consider autism to be a strong net negative
           | in my life, and I find folks who really embrace Asperger's as
           | part of their identity to be alien to me. I'd love to
           | eradicate this condition from the earth to spare future
           | humans from the pain that inability to socialize will cause.
           | 
           | I'm sure that some people who like their autism will be upset
           | about "eugenics", but frankly, we don't have to be God damn
           | Nazis to acknowledge that acting eugenicily is good and
           | advocating for disgenic behavior is bad long term.
        
             | emodendroket wrote:
             | > Is autism something we can test for in the womb?
             | 
             | No.
             | 
             | > I'm sure that some people who like their autism will be
             | upset about "eugenics", but frankly, we don't have to be
             | God damn Nazis to acknowledge that acting eugenicily is
             | good and advocating for disgenic behavior is bad long term.
             | 
             | Well you can pretty much say that Nazism is a natural,
             | logical endpoint of eugenicist beliefs. If others decide
             | not to cooperate in your little project of eliminating
             | "dysgenic" traits then you'll have to compel them with
             | force.
        
           | emodendroket wrote:
           | Do you mean to say that autistic people, or those with
           | autistic traits who are not outright autistic, should not
           | reproduce (with each other), because of the risk their
           | children may be autistic?
        
             | R0b0t1 wrote:
             | That's what he is saying, yes. It's a dangerous thing to
             | think because we do not understand if there is actually
             | some hidden purpose to the genes that modulate autistic
             | behavior, same with depression.
             | 
             | It's a strange thing to bring up after assortative mating,
             | really. If it comes up in assortative mating it implies
             | there is a reason for the genes to be there.
             | 
             | One example: In various experiments related to resource
             | exhaustion, antisocial and/or "autistic" mice were the ones
             | to survive the collapse of mouse society as they were more
             | likely to not be involved over resource squabbles.
             | 
             | Of course, there are some people who are very autistic who
             | do not have very happy lives, and some people who are just
             | kind of autistic.
        
       | kloch wrote:
       | > 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 wrote:
         | 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
        
       | verisimi wrote:
       | I find Dr Moulden's explanations of autism excellent - a type of
       | ischemia (stroke).
        
         | alvarlagerlof wrote:
         | How is that supposed to make sense?
        
       | kazinator wrote:
       | 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.
        
       | golemiprague wrote:
        
       | mekkkkkk wrote:
       | 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 wrote:
         | 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 wrote:
           | >Maybe this is a perpetual cycle when it comes to mental
           | health terminology.
           | 
           | yes, the euphemism treadmill.
           | 
           | https://englishcowpath.blogspot.com/2011/06/euphemism-
           | treadm...
        
             | danuker wrote:
             | Reminds me of George Carlin.
             | 
             | Warning: politically incorrect content ahead.
             | 
             | https://www.youtube.com/watch?v=mUvdXxhLPa8
        
       ___________________________________________________________________
       (page generated 2021-12-25 23:00 UTC)