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

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

neuroclastic.com

336 pointsstared388 comments

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.

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.

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.

> "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".

No opinion one way or the other regarding this specific case, however I'd like to note that both general and local anesthetics can have serious side-effects. There were even relevant horror-stories in HN comments.

A specific issue is that anesthesiologists are not necessarily available for all medical procedures. Perhaps it's better to err on the side of pain if the gynecologist is alone?

EDIT: "After simple dental surgery, a man lost his ability to form new memories" https://news.ycombinator.com/item?id=24566568

One thing that has always baffled me is why nitrous oxide isn't commonly used in these sort of situations.

There are formulations available (mixed 50/50 with oxygen) that don't require an anesthesiologist.

The vast majority of gynecology procedures are scheduled - the fact that they don’t intend to do pain management and therefore don’t plan so that anesthetists are available is an effect of not doing pain management, not a cause.

What about cost, though?

Basically orthogonal to your argument.

My intended point was that raising the cost of a procedure makes it less accessible.

Maybe if we could just do economies of scale for insurance, maybe including every person, it could be much cheaper. Also, no shady lobbying everywhere anymore.

Cost is not a consideration until after they have decided that pain management would be valuable, so it can't be relevant in a scenario where it wasn't considered in the first place.

> After simple dental surgery,

Odd the article entirely leaves out what tooth was being worked on. The upper back molars are very close to the brain, and Wisdom teeth are connected to the central nervous system, so it is not really a head-scratcher brain damage could occur if the ophthalmologist slipped, or if the patient was hyper-reactive to the anesthesia and jerked while the doctor was working. But in both cases, the doctor should have noticed.

> ophthalmologist

isn't that eye-doctor?

and whatever the case, the risks should be told to the patient. informed consent after all.

statistically pain management is very safe, and medical procedures cause a lot of stress and discomfort, and it'd be good to manage that especially for patients who are not used to those procedures. (eg. kids, or anyone who gets a chronic disease diagnosis and and has to go through various scopies like colonoscopy).

> isn't that eye-doctor?

ROFL orthodontist isn't even close ><

You'll feel some "slight pressure and moderate discomfort" was how I heard an induction described. The party experiencing the procedure described it as, paraphrasing, "the most excruciating pain I've ever felt," but with many more words I won't reproduce here.

I wonder what was the procedure that causes such pain

Inducing labor. In this particular case it was the Foley balloon, but my understanding is every step of the process is at best painful.

Thanks, I hadn't heard about the Foley balloon.

I have heard that people with chronic pain also get this kind of reaction often.

I used to have fairly severe chronic pain (facial neuralgia) that was fixed with surgery and it's exactly like the original poster described.

The old joke about the dentist saying this "may hurt a little" suddenly realising the patient is holding the dentist's testicles. "This may hurt a little" says the patient.

I was diagnosed 3.5 years ago, the week after I turned 37.

It's really interesting to see/hear/interpret the range of responses from people. Some people aren't surprised by it at all. Others completely disagree with the diagnosis and will say something. And others will obviously disagree and not say anything. And some even responded in ways that don't make much sense at all. (One of my best, long-term friends responded with "well, you've always been a great friend to me!" when I texted him the diagnosis). And others will just not say anything and will avoid the conversation.

I'll say that the myriad of responses is insanely confusing and, for me, definitely contributed to my confusion/isolation after the diagnosis. It took a long time for me to counter other people's completely-uninformed opinions, but what I've found to really help is to remind myself of the facts:

1 - I received this diagnosis from a trained professional. The process was long and thorough, and I believe I did an equally sufficient job of representing how I may fit on the spectrum as well as how I may not.

2 - The ADHD assessment I took (two years later and, again, with a trained professional) also identifies ASD and the results of the assessment skew in exactly the way it most commonly skews for those on the spectrum.

3 - The people who knew me before I really leared to mask are the ones who see my diagnosis as obvious. The ones who knew me after I started drinking (I quit drinking 8 years ago) and while/after I learned to mask are the ones who doubt it most.

4 - The ones who doubt it have absolutely zero training and have done zero research into what it actually means to be on the spectrum.

5 - Exes (and my girlfriend at the time of the diagnosis) who I have actually lived with, the ones I still talk to, are the least surprised by the diagnosis. One, who is a therapist, even suspected it.

6 - The "most autistic" things I do, I keep out of the view of others. So, of course their perception will be skewed.

7 - Alcohol can really dampen the social aspects of ASD. I used to be a frequent and heavy-ish drinker in social situations. Which led me to quit, years before my diagnosis. As soon as I quit drinking, my social life and friend circle tanked. Anecdotally, this seems very common with folks on the spectrum who also drink socially.

I don't know if that helps, but it helped me tremendously to lay all of that out in a way that reduces the impact on my psyche as a result of others' doubt. And it also took me _years_ to really see that objectively in a way that's only beginning to put up an emotional/psychological boundary between what my uninformed friends believe and what I know to be true.

On top of that, if anyone wants to doubt me again, I have a solid list of things I can present. And they can choose to believe them or not. But I am now far more clear on where I stand and can be far less swayed/affected by another person's doubts.

I hope you're able to find a similar steadiness in it. It can be really hard, but if you can work through the process, it might be pretty rewarding and validating.

* Edited for clarity.

Hi Ben,

I hope you don't find this inappropriate (apologies in advance if you do).

My son was diagnosed with ASD a couple of years back. More recently, it was suggested that he likely has ADHD too. Essentially, the school he'll be starting at next year wanted him to have a cognitive assessment and it came back with a gulf between the things he's good at (reason, logic etc - top 2%) and the things he's not so good at (working memory etc, bottom 7%). Nothing in between.

I had always suspected that I had ADHD, but it was dismissed by therapists who wanted to focus on SAD (very limited success). It felt a little self-involved, but like a lot of newish parents, this was the push I needed to ask for an assessment for myself. The specialist said it was clear as day and at 36yo Vyvanse was immediately (and remains) life changing :)

I'm getting to the question (sorry) - my GP, wife and my a few others suspect that I'm autistic too. Having done a few quick quizzes, it seems that they might be correct (explains a lot, TBH). I was told that there's limited benefit in being diagnosed as an adult though, so I've left it alone. I'm left wondering if that gels with yourself or anyone else that was diagnosed in adulthood? Have you found diagnosis to be beneficial? If it wasn't so expensive, I'd probably do it for curiosity's sake...

Thanks!!

There are two types of diagnoses: the kind where your psychologist tells you you have it and puts it on your chart, and the kind where you take the national test (at least in the US), which has a year-long wait list.

I think what most people mean when they say it's not worth getting diagnosed as an adult is the second type, because the only thing it really does is force schools to provide adequate care for students.

I recommend seeking the first type though; I was diagnosed at 30 and it was worth it just to know. I only slightly suspected it though, and the diagnosis is what put me on the path to finding the communities, research, etc., which is ultimately what I got out of it -- so YMMV.

EDIT: Oh and meds! There aren't autism meds, but autism is often linked with anxiety or ADHD, and those can be helped with meds. Diagnosis is a first step to that.

> the national test (at least in the US), which has a year-long wait list.

what is this?

I can find no evidence that this exists.

There is no precise test for autism.

My source is my psychologist, so I don't personally know more about it. But here are some resources I found that allude to it (though like most info on ASD, it focuses on children):

> A comprehensive evaluation requires a multidisciplinary team, including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose and treat children with ASD. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing.

National Institutes of Health (https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Educat...)

> ...a formal developmental evaluation may be needed...done by a trained specialist, such as a developmental pediatrician, child psychologist, speech-language pathologist, occupational therapist, or other specialist. The specialist may observe the child, give the child a structured test, ask the parents or caregivers questions, or ask them to fill out questionnaires. The results of this formal evaluation determines whether a child needs special treatments or early intervention services or both.

Centers for Disease Control and Prevention (https://www.cdc.gov/ncbddd/autism/screening.html)

Not at all an inappropriate question. And I'm always glad to talk about any of this stuff and hopefully help in any way that I can.

Side note: Vyvanse has been life-changing for me as well. There's a simultaneous grieving for what could have been all those years, with excitement about what's finally possible.

To your main question, I had the exact same question for years. And I see many people articulating the same sentiment, online and in person. In fact, several years before my diagnosis, I saw a far less-qualified therapist about a diagnosis. I firmly disagreed with her principles in how I should answer questions. In hindsight, my disagreement was correct. (As a basic example, if I was able to learn how to make eye contact - no matter how hard and extreme it was to teach myself, and how much effort it now takes - then that is not an issue/symptom in that therapists mind. I know now that is completely wrong, given how masking works, especially for adults.)

After that initial meeting, I suspected the diagnosis would come up negative (it did). And I was left to consider for several what would be the point in getting a diagnosis from someone far more qualified.

By the time I decided to actually seek out a far more qualified professional to do a far more thorough assessment, I was very clear on why a diagnosis was important: I needed to understand if I had multiple symptoms to address individually (irregular sleep, executive function issues, anxiety, social challenges, etc), or if that collection of symptoms would be better worked on if I understood that it may actually be one thing - autism - and should be approached as such.

So, for me, the utility was because I needed to know what I was working on, in order to work effectively on it. For example, executive function issues stemming from autism would be approached differently than "you just never learned how to prioritize and start things." Or, social/emotional issues stemming from autism are approached very differently (ie: I may start at more basic and fundamental places, and fill in very different knowledge gaps) than if I was neurotypical.

That said, I know of people who don't have official diagnoses, and they're okay with that. Some have fully adopted the diagnosis and researched how to approach it. Some haven't and have chosen to recognize that they're different. And both of these paths seemed to work for these people. For me, I would just much rather know.

Let me know if that helps or if it begets any other questions.

Thank you so much for your response and to the others that responded as well. I'm left thinking that I should take my interest as reason enough to seek a diagnosis.

Another poster commented on it, but I definitely thought of my ADHD diagnosis/treatment as panacea. I believe that's because Vyvanse has (amongst other things) largely put a lid on the anxiety that I've struggled with my whole life. I certainly share your mixed emotions with the late diagnosis and subsequent success with medication there. It's hard not to dwell on the past, but overwhelmingly, I'm enjoying my new life.

The eye contact one is interesting. I recall being yelled at a lot in childhood for not looking at people when I speak to them. As an adult, I find myself forcing it when I remember; it honestly makes me feel ill just typing this and thinking about eye contact though hahaha

Your rationale for working on things from an autism-first perspective makes a lot of sense. In fact, it's precisely the reason we got our son diagnosed at 3 - it changes how his speech therapist, physiotherapist, OT, etc treat his various challenges. Perhaps that's another reason for me to seek a diagnosis - it should be easier to better myself if I have some clarity around what's actually going on...

Thanks!!

The other 2 current replies are great and in-depth. I'd like to add a more shallow, kind if like a TL;DR.

(For reference, I got diagnosed mid 30s, wife idem.)

1) You need to find a proper therapist to assess if you have autism. Ideally someone specialised in such. Because otherwise, chance of misdiagnosis is too high.

2) Co-mobordities are common, ADHD and anxiety were given as examples in other reply. I had the latter diagnosis, and got Ritalin prescribed for symptoms of the former in past (I hated the ups and downs, and I could not afford Concerta back then. FWIW, I currently use Prozac, it works great for me, but does make me more oversharing but less edgy. There's multiple other options, I went to a psychiatrist specialized in autism.) If you already have another diagnosis do not assume it is a panacea. If you have ASD it is the root of your being, and all your other issues (see some examples at #3) more or less stem from it.

3) People go for a diagnosis because they are stuck in life for one reason or another (a trigger). Common triggers are work related (issues with coworkers, unemployment), social (divorce, lack of friends, drug abuse), or family diagnosis (children, cousins, etc).

4) Proper diagnosis is painful. Your entire life is basically reviewed with multiple professionals who have specific expertise on the field of autism. It takes a lot of time, energy, and probably money (I live in The Netherlands and it only cost me my 'own risk' of insurance). Try to prepare for it, I say this to warn if you are in a very stresssful situation in life.

5) There's a lot of bullshit about ASD on the internet, and self-diagnosed or misdiagnosed people. Via my diagnosis I met other people who had a proper diagnosis, and I learned so much about autism.

OK it ended up longer than I anticipated, kind of how I am IRL too, masks my shyness too.

Good luck!

> And some even responded in ways that don't make much sense at all. (One of my best, long-term friends responded with "well, you've always been a great friend to me!" when I texted him the diagnosis).

I think what they meant must have been something like

> I would not have guessed that someone who has always seemed as attentive to my feelings and comfort as you do is someone who has difficulty reading social cues or exercising cognitive empathy

it requires a few leaps in interpretation, but I think they must have meant to be saying something positive about some specific social skills of yours that they expect to be difficult for autistic people.

It kinda makes a little sense. But only a little. It's almost like saying

> it's okay!

as if you'd just apologized for something, which is definitely baffling (and a bit disappointing).

Yeah, it's a good enough friend that I deliberately tried to not interpret what was intended. In part because, as you say, it's a bit of a leap.

Instead, I chose to interpret that the news was surprising and perhaps a bit uncomfortable. And I know that when people are surprised with things like that, they can say things that don't quite make sense or reflect how they feel. So I just kind of left it at that.

But the noticing of it was more the impact that, on this end, it's another data point of not feeling understood. Especially when it isn't brought up again.

Misunderstanding social messaging is a symptom of ASD, so it's important to not assume insult when someone says something you don't understand.

Oh boy, reading through this comment section is a hard pill to swallow.

I have always had memory problems and I can recall hardly anything that happened a year ago.

When meeting up with friends I will prepare stories to tell but after I've burned my fuel I become super passive, and I've always wondered how other people can talk so much more than I do, I guess I just always assumed they have more stories on standby. Now I realize other people can actually speak about whatever, on the fly.

Whenever I have to improvise, I either have to form a sentence in my head before I say it, or if I try to actively engage in conversation and have to respond quickly, dumb half-sentences will come out. Which is a shame because I have a lot to say about certain topics but I physically can't in the moment, and I always beat myself up about it later.

Programming for 10 hours is not a problem but I'm fried after a 2-hour meeting.

I drink a lot because it helps me loosen up. My dad passed in 2016 and I don't remember much about him but he was a heavy drinker aswell.

Today I learned I have autism. I should seek a therapist.

Just felt like typing this out.

In similar ways, I can definitely relate. I deliberately studied and practiced sarcasm and storytelling for several years before I got comfortable with it and it landed half-decently. And I still get locked up around certain kinds of people.

Therapy is definitely a good consideration. As is general research to help understand what it might mean in general. If you're able to in your area, definitely try and find a therapist who understands autism. Otherwise, from experience, it can be a real impediment.

It's a lot to handle and I hope you're doing well with it. Feel free to ask any questions you might have. I'd be glad to help however I can.

Congratulations on learning something about yourself and taking steps towards managing your condition.

Thank you - this really helped me.

Why do people with autism inform everyone they know of their diagnosis when they get one? Every time I can remember someone telling me about a new diagnosis, it was for a terminal illness.

I'm going to assume there's no ill will or frustration in your comment.

To answer it directly and plainly, and from my experience only, the social challenges of autism are such a huge part. And so, sharing that with people I was closest to, gave me something to point to when things would get awkward or misunderstood. For example, it wasn't uncommon for people to not understand why I didn't see something the way they did. Under the lens of an autism diagnosis, it helped to explain that difference. And if I share that with you, the tension that arises next time will (hopefully) be lessened and better understood.

There's a great deal of confusion and feeling of being misunderstood that seems to be common with folks on the spectrum, and especially for myself. So to be able to put a name and understanding to that confusion gap is a massive relief. But there's a limit on that relief/understanding if I don't share that with you.

>For example, it wasn't uncommon for people to not understand why I didn't see something the way they did.

I may be extremely cynical in saying this, but I am imagining you disagreeing with someone, and them being upset by that. Then you tell them you have autism, which allows them to resolve the discomfort of being disagreed with... by allowing them to switch into smile-and-patronize mode.

Smiling and patronizing is an emotional state where you're not really listening to someone, while acting positive about the fact that they're talking. It's used on children to the endless frustration of smarter kids.

I'd agree that's an extremely cynical way of saying it.

I don't disclose it to people I'm not generally close with. And I have never disclosed it at the precise moment of disagreement. It's always been a separate conversation.

I have had plenty of disagreements with people who don't know I'm on the spectrum. And if I wish to not disclose that to them, then it's my responsibility to do my best to make sense of the interaction. I may do that alone, or I may do my best to ask more questions to try and understand what they're saying. Or I may speak to the symptom before asking for clarification; "I sometimes miss people's intent or subtext. Can you be more specific?"

Disclosing it to those that are closer to me provides context for future interactions that I'm not trying to be difficult and that I may genuinely not understand what's being presented. It's their choice how to adjust future interactions with me.

Also, it seems like you may have a number of notions as to how autistic people interact with others. I'm obviously not sure if you've actually had interactions like this, or if you anticipate for some reason that people would react to you in that way.

But it may be worth considering that the things you've posted here are very likely to be very far off from the norm. And if you've had consistent interactions that have predisposed you to feel the way it seems like you may, it's worth considering that you may just be interacting with someone with other personality traits in there that may not be autism-related.

But if you haven't had these kinds of interactions with people on the spectrum, I'd suggest to you that your preconceptions are very different from my experiences.

They don't, necessarily. Some people with autism will prefer to be "in the closet" so to speak.

I'm glad you added this. I know lots of people who haven't/won't tell any but the very closest people to them.

Friends/family/coworkers have told me about everything from COVID and malaria, to diagnosed social anxiety and autism, to various cancers, to a broken collarbone and a stuffed Achilles tendon. Social norms must differ.

Neurotypical people talk about their health issues all the time. The older they get, the more they talk about it.

I really appreciated reading this, and found it useful and insightful. Would you be willing to share some of your "autistic" behaviors which you successfully mask?

Thank you for the explanation of your experiences, I appreciate your input! I definitely understand how your friends and family could have responded. It's good that you tried to inform them of their own misconceptions and opinions.

Of my own friends who are diagnosed, they have time and again pushed for me to also get a diagnosis but I'd heard it can be a quite expensive and drawn-out process (as you've stated). Can you elaborate on about how long or thorough this is? Every article I've seen doesn't really seem to go into any detail on this point.

Did you search out a professional explicitly for the purpose of being diagnosed? I hope I am not being too forward, I also would like to go through this process but I'm not quite sure where to begin. The friends of mine who are on the spectrum have been diagnosed when they were children and I assume or have read a diagnosis as an adult can be more difficult. I'm 32 so not too far off from the age you were diagnosed.

Thanks for any help you can provide and thanks again for participating in the conversation, it was great reading your response.

I make light self-deprecating conversational jokes about being autistic. "My autism is freaking out at the lack of specificity here, can you help with more concrete language?" For people who understand autism, they get it, and for the people who don't they think I'm just using the word casually like people who joke about having OCD.

Do you mind educating me with what that means? Does autism make it harder to understand abstract concepts?

Autism makes it hard to deal with ambiguity.

I feel your pain mate.

I am feeling that pain right now!

If you could share an experience I feel like that would really help me understand. I'm probably in some ways like a fish in the water of ambiguity, so accustomed to it that I don't think twice about things that could pose serious confusion to others.

Sure! As an example, a friend asks "Do you want to grab a drink tonight?". My day is free, and it's morning when I receive the message. I reply "Sure! Where and when?". They don't reply.

I am now paralyzed for the rest of the day. My brain can't snap my schedule into place, so everything I do is a possible conflict with this promise I just made. Even if it's morning, something may happen -- another invitation to do something in the afternoon, maybe -- that I can't resolve because I don't have the necessary information to. This causes overwhelming anxiety.

My entire brain is blocked on resolving this ambiguity. I can't do hard tasks like programming. I can't pay enough attention to my favorite shows to watch them. If I do, I'll end up rewatching them later because I didn't retain anything. Reading a book is out of the question; I'll just end up rereading the same paragraph 20 times in a row then giving up.

The whole day, zapped out of existence.

To others I will appear distracted, hard to hold in conversation, irritable, and in a hurry. Internally, I'd equate it to the feeling you get on a once-in-a-lifetime special day, like your wedding day or a test that could decide your entire career. It's just that I get it from really small things, and all the time.

That is awesome

What I've learned from working with transactional databases is how to deal with things like this.

You have a time in the evening, now that time is blocked by your friend (they didn't commit nor rollback). You can't process further because of that lock on your time. The lock is unspecific (there is no start nor end of time).

So you become anxious, because you need to route things, but you can't do this because of the undefined commitment.

There are several strategies that can work:

  1. kill the undefined commitment (you can tell them that something came up, so you can be there no longer)
  2. specify the bounds of the lock, so that it won't take everything (ask them again for the time and place, if they won't reply do the 1.) 
  3. Guess it. If it is a drink, then it is after work. Then how much it usually takes me to get there, do it + some padding in case something goes wrong. Basically you do the work on your side. 
  4. Discard all conflicts. (Tell everyone that you have an important meeting, so you will interact with them tomorrow). Now your whole day is waiting for that meeting and nothing else. In some circumstances it is the right way to go. 
  5. Optimistic scheduling. Schedule everything to the best of your ability. If something conflicts, kill or reschedule the less important thing. (I am sorry,  but something came up, so I can't be there today, maybe tomorrow?)
  6. Simply wait. As the day progresses you will get more information to make the  right choice

P.S. I apologize for my English (I am severely out of practice with my writing skills)

You're right, but note for onlookers that even realizing that this variety of strategies exists can be the work of years, and learning to apply them years more. Whereas it always seems that the "other people" apply them instinctually.

My favorite is when people suggest you behave based on context such as the person's emotional state, voice inflection, etc. It's like, "If I could do that, I wouldn't have this insane matrix of rules."

Would you consider this a rare example, or are you dealing with things like this ~20 times a day? Do you think people can be most helpful by not being ambiguous? Or by understanding once you've reached that state?

Now that I'm on meds, I only get a day like this maybe once a month. If someone is kind enough to want to help, I definitely ask they first and foremost try not to be ambiguous, or at least to be patient with me when I rapid-fire questions at them to try to resolve the ambiguity. But sometimes ambiguous things just happen, so understanding is also appreciated.

I have had depression for pretty much as long as I can remember anything at all and this feels relatable. I can't say anything smart or helpful though.

This has been a life long struggle for me and I empathise with the frustration and loneliness.

From my own experience, 9 out of 10 people will not understand and will say anything to “be polite”. But those few people who do listen (even if they don’t understand) are worth finding.

Reading your comment breaks my heart. Sorry, it's going to be a long post, and my english skills are questionable...

I'm 35. French. My family used to see the same allergist since I was a kid. One day, after a really bad nose/eyes allergy attack, he told me it was probably psychological. Well yeah, it's kind of psychological when you are losing your mind with your eyes and nose being painful + the headaches. I'm a peaceful guy but the "psychological" BS with his arrogant attitude was too much for me, I was literally about to grab him... I just left without even paying him. This idiot had the reputation to be the city best allergist, good thing he retired some time later. I was something like 23 or 24. Most internists I saw between 21/25yo didn't really cared about my condition. I guess it was too difficult to find out what was going on with my chronic colds/allergies, my obesity, my permanent tiredness, depression... Most psychiatrists I had between 21/25yo were absolute trash, the last one tried to calm me with cyamemazine, a strong antipsychotic. Probably the worst time of my life, imagine all the symptoms I listed before + the sedative effects of the cyamemazine... It's like you don't even feel alive anymore.

I hit rock bottom when I was 25. I had severe allergies without even going outside, always tired, 1 or 2 naps every day, suicidal thoughts... I couldn't work anymore to survive. Well, good thing it happened when I was 25, because in France you can't have any benefit welfare before 25 (except housing welfare). Before 25, sometimes I used to survive with like 200 euros per month, so the 500 euros "social solidarity benefit" was a lot of money to me. I was a mess since I was a teenager, but for the first time of my life I met someone from the social services who took care of me. She was used to this kind of situation and recommended me a good internist. I had to "wait" to be 25 until a good internist sent me to a competent pulmonologist who diagnosed with sleep apnea. This is why I was always tired... My internist also sent me to a good allergist. I finally got skin tested (the family allergist never tested me...). I knew about pollen allergies, not for dust and mites... This is why I was sick all the time without even going outside. Some asthma too. Things were getting better after trying a lot of psychiatrist, but not great. The years go by...

2021. After seeing a good psychiatrist in a mental health clinic for the last two years. Things got better, she found the best pills "recipe". :o) But most important, she started to "understand" me. She knew something was wrong despite the fact I was feeling happier. She knew about my chaotic school years, my lack of concentration and focus, and I guess it became obvious when I failed 2 professional training courses this year.

See where this is going ? ... Early november, she sent me to one of her colleague, a specialized psychiatrist. It was brutal, after studying my records and talking to me for 2 hour, he told me he highly suspected a ADHD (attention deficit hyperactivity disorder) and possibly an ASD (autism spectrum disorder). When we were walking to the reception, he told me he was "betting" I was probably around 120/130 IQ, smiling. I was like... Yeah, RIGHT... WTH is he talking about. :/ ADHD was plausible to me but I was skeptical about the rest Reading articles about autism or Asperger sometimes felt very familiar to me, but that's about it. The IQ thing ? Dude, I always felt stupid as long as I can remember. School was terrible. Rates, people, family, everything was terrible. Same as an adult, I always felt too "mental" to do anything "basic" but to dumb to do anything "better". My only good years were as a security guard on a large industrial site. Lots of night shifts, alone...

Next steps : 3 appointments with a psychologist. A first meeting, the WAIS test the next week, and the results another week later. It was among the three longest weeks of my life. Waiting for the results was a nightmare. It's late november, ADHD is confirmed, heterogeneous IQ between 100 and 130... As far as I understood, I have good cognitive capacities, especially with visual stuff, but everything related to memory is terrible... It's such a mess I don't have a homogeneous IQ. It was weird to feel "smart" with the cubes and other visual test. At school, maths were my nemesis, but I remember having fun with geometry. They're still some doubts about an ASD. I was kind of shocked during the last appointment, it was a lot of information to handle. But it seems it's harder to get diagnosed when you're an adult. The psychologist needed to talk to my parents, my school grades, some specific medical informations about my childhood, etc. My mom is gone, I don't want to see my dad anymore and I have nothing about my childhood. If I want to find out about a possible ASD, she told me we could try a "social cognitive exploration" one day. I'll wait until I feel less lost...

Early december. I'm finishing my 6 months failed professional training courses and the ADHD/ASD specialized psychiatrist put me on methylphenidate right away. "Concerta LP 54mg". "It's going to boost you up. Side effects are going to help you losing some weigh, pretty cool uh ? It's similar to amphetamines." Wait WHAT ? This is insane. I mean, nothing's going to change about human interactions etc, but it feels like my brain can finally do things without quickly ending exhausted. It's not perfect, but I don't feel this heavy "mental fog" anymore when I try to do something mentally demanding...

This year was an emotional roller coaster. The 6 month courses probably were one of the worst experience of my life, content was boring, terrible teachers, toxic students, I ended up mentally broken... And then all of this happened. It's a bittersweet feeling. I can't put the last 6 months behind me, I can't forget how all this toxicity affected me. I feel really great thanks to the methylphenidate. Learning seems possible, I can finally enjoy things like playing online with my friends without feeling mentally exhausted after 1 or 2 hours. But sometimes I just lose it, thinking about how things could have been different with good parenting and earlier medical care.

How to you start your life at 35yo ? I'm not even sure I'm going to live another 35 years.

Sometimes I have flashbacks of my previous life, like in high schoool, some really nice memories like being sent to the school psychologist because they suspected me of drug use because I was tired and alone all the time. I think I never touched anything until my first beer around 21yo. Yeah, 21, this is how lame I was, but to my school I was probably a drug dealer. Good job french educational system ! Domestic violence, sexual abuse. My interactions with teachers/school psychologists/family MD/police/child protection services/etc were an endless failure. All my life I have been teased and bullied for being weird and lazy. At school, at home, in family meetings, at work...

I don't even know if I really tried to hide things, I was just used to think everything weird or terrible in my life was just normal. How the hell are you supposed to understand something's wrong when you have no idea of what's good or wrong. You can't place yourself on a scale if you don't know what 0 or 10 means. So yeah, you spend years hearing people calling you lazy, unmotivated. The "where there's a will there's a way" people, the "you're just making excuses" people. Same story, I turned down everything, which can sometimes cause bad reactions from your "friends", which can make you feel even worse... This is why your post overwhelmed me. I felt this for decades.

I've been doing a big cleaning up of my entourage for the last 2 years so I'm not going to have a lot of decisions to make about ADHD and a possible ASD. I'm just curious about how I'm going to use different learning methods so I can move forward. I don't know about human interactions... I don't think I can't say anything positive about this, there's too much hate in me. There is one thing for sure, you can't fix toxic people.

Take care.

Thank you so much for sharing your story! Don't dwell on regret too much, have hope for the future. I bet you get 70 more years.

It was probably "too much information", but it's not like mental issue stories are supposed to be nice. Maybe I'll delete it one day, haha.

Try to remember that where you are is a good place to start, and to have compassion for your past self. Your past self did everything they could to get to a better situation. And now, things sound like they're starting to get better.

I feel for you. I've had my own fantastic journey trying to climb out of ASD and chronic health overlap. It's complete shit.

I've had luck with Stoic philosophy to try to let go of how much time I've lost because of illness, and how much more I'm going to lose. Feel free to email if you just want someone else to talk to.

Thank you. I thought it was too much but I'm happy I wrote it.

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.

I assume ‘empathize’ is meant there?

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.

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

> 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?

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.

And if you think diagnoses are bad, wait 'til you see what passes for treatments.

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…

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.

Living in germany i got good healthcare and did allready some deeper analyses as a adult and its apartantly adhd. In the first message I meant as a child the test was not enough. But thank you for this hint :)

Often this deeper analysis is done on children and the 15 minute thing a quick initial screener :)

I had a bunch of assessment in early childhood but I didn't figure out what exactly my set of issues were until I got assessed by a very good neuropsych later in life. I really wish I knew about this stuff in late childhood, would've explained a lot more! It's also sad that there are not many good neuropsychs out there and it's hard to evaluate who is good for most people.

One thing for the other intelligent people out there, your intelligence can often mask that you are not performing to your full potential, because it compensates and makes you perform 'good enough'. Unfortunately our medical system is more orientated towards fixing the people who's lives are in a mess vs people who are just OK, so those who hobble along often don't get the help they need. Sometimes wish there was an equivalent of doctor that focuses on making people perform their best vs. good enough sometimes, kind of like a coach.

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

probably lying to get amphetamines, which enhance performance

Saying most mental health professionals are a joke is perhaps a little harsh in my opinion, after all they are trying to understand and treat the most mysterious and complex things known to man.

We don't diagnose diabetes with a list of symptoms because we have a lab test (where we have picked an arbitrary value, but that's another story). We have no lab test for add. That is frustrating, and I think that adhd is probably overdisgnosed, but I think most are doing the best they can.

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

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.

Maybe you should start by telling us what you are talking about.

Yes! Exactly! Is there a name for this phenomenon?

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.

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"

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”

Maybe they should split it into more specific categories.

Like we don't just say "you have heart disease".

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

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."

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.

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.

How would you go about treatment for illnesses that have no known cause?

There are illnesses where we have a known set of symptoms, a known progression, and known treatment options, but have yet to discover the underlying set of causes. You may be able to reliably diagnose, and treat, without understanding the mechanisms at play.

You're not going to be able to work with the bureaucratic side of the healthcare system without being able to say what they're being treated for. Those treatment options can be approved for one illness and not another, even when they share symptoms, because of known efficacies.

Having a name to call something helps, even when you have no idea about the mechanism at play.

In DSM-V they did the contrary. In DSM-IV, things like Asperger's, PDD-NOS, etc existed. Now, with V, it is all under the same umbrella: ASD ('Autism Spectrum Disorder' in short 'autism' or ASD).

I'm not sure why, but I know there was discrimination going on. People looking to e.g. headhunt idiot savants or high functioning autistics with Asperger's.

The DSM is ... well, it's a many-purpose compendium, but one of them is diagnosing people to get them a starting point. For insurance claims, for looking for specialists, etc. But it's certainly not in itself an expert manual. (While yes it is, but it's really not. Because it necessarily has to exclude the outlier cases, so it intentionally limits its own scope, focusing on the most common symptoms, and general descriptions of them. Which is very hard for psychological phenomena.)

And it was because it seems those are all caused by the same underlying biology, so they are the same disorder with differing levels of severity in their symptom categories. (Social/language and restricted repetitive behaviors.)

To add to the above, my understanding is that classifying autism spectrum disorders into subcategories (eg aspergers) didn't seem to provide much benefit and it made things more difficult to understand. At this point all of our limited interventions are similar and are focused on strengthening social skills, which applies whether you have aspergers or pervasive developmental disorder.

This may change again if we find benefit in subclassification (e.g. a treatment that benefits aspergers patients only).

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).

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?"

What matters is the context or even what isn't being said.

For example, it can imply the person is saying they recognize a (typical) trait in themselves. It can also imply the person does not have a diagnosis, but does recognize themselves in the description. Or it can imply the person is interested in figuring out if they have a diagnosis. It can imply an affirmation of sympoms ('oh, now that you say it, I do recognize X or Y in your behavior). It can also be used to create common ground or sympathy. I wouldn't assume harm though (theory of mind!).

I have an ASD diagnosis and it was not a matter of a 15 minute questionnaire as suggested elsewhere in this thread with regards to ADHD. Yes, I did need to fill in a questionnaire. After that I had to wait almost a year til the diagnosis process was started. It included detailed historical analysis of a parent ('hetero anamnese'). I would like to assume all ASD diagnosis are proper, though mine was after DSM-V was introduced so I have autism but no specific label.

From what I understood, its being discussed in the scientific community AD(H)D is merely a variant of autism.

When I see a movie like Girl, Interrupted or Ik Ook Van Jou it is supposedly about a young woman with borderline (BPD) but all I see is a young woman with autism instead. That's just my personal take though.

> 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.

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.

That problem could be attributed to the tragedy of the Commons.

Claiming you don't work well in an open plan office and being taken at face value would lead to literally everyone saying that, because surprise, most people don't work well in open plan offices (I'm very neurotupical and I hate it).

Another way to look at it is that we've evolved as a society to go out of our way to try to accomodate people with different needs when necessary. Being given an office if you have ADHD is great. Try to go back 100 years and you'd be fired from the factory instead for not being a perfect cog in the machine.

So it's actually beautiful we are able and willing to accomodate others, when for most of history that wasn't the case at all.

>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.

> 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.

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.

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:...

> normies

I really think that is an incredibly divisive and reductive way of looking at people. In my experience, everybody has mental problems, but you usually don’t get to learn of someone’s individual struggles unless you are very close to them.

I am guessing you have a job, and maybe you dislike how you feel others judge you for your personal difficulties with your symptoms. You appear to judge others, who have their own personal struggles with their own quirky symptoms, perhaps which you don’t empathise with because they don’t happen to have ADHD?

I really like the jokingly serious way this is said at 12:15 to 13:30 in this video: https://www.youtube.com/watch?v=Ctz6eJ3Pr94

> > normies

> I really think that is an incredibly divisive and reductive way of looking at people.

This is actually one of the problems in neurodiversity discourse, too: neurotypical doesn't actually qualify as a neurotype, and probably no one is neurotypical.

Well, maybe that was a bad choice of word on my part. I don't think of the majority of humanity as being judgemental assholes. Most of the people that I actually interact with are nice and understanding, because everybody's got their own set of problems, and we can use all the mutual understanding we can get. But there are certain people, especially in positions of authority, that are able to turn their ignorance and lack of imagination into /my/ problem (teachers I had decades ago, or grandboss at previous job, for example, which is part of the reason I am currently /not/ employed). I'm really complaining about systemic problems, not individuals.

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.

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.

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.

I think there's a difference between someone saying they are "a little autistic" when talking to someone who is definitely autistic as a form of self-identification, vs them trying to figure out if they have autism themselves and put the pieces together of why they seem a bit different than everyone else.

I've recently started wondering if I'm a little autistic myself. I would never say that I am in response to someone who tells me that they are. But I fit the description of person 1 almost to a T, minus the thumb sucking and chair rocking, but plus trouble dealing with driving to where driving on an unfamiliar road will ruin my day. Am I autistic? I have no idea honestly.

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.

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.

Very good point. I wish people would still use the word sympathy for expressing shared suffering, so that the word empathy could keep its original meaning.

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.

My oldest is a daughter of two parents with ASD diagnosid and certain things have to go in her way, she needs to know in advance what happens, and she has difficulty adapting to a situation. In my country, you can only get an autism diagnosis at age 4, and she's well into 3 years old. These temper tantrums or meltdowns are common for age 3 though.

PS: We were both misdiagnosed as having anxiety disorders (GAD and avoidant, GAD and agoraphobia respectively). I also got Ritalin prescribed against fatigue (because I could not officially get ADHD diagnosis as adult according to my psychiatrist this was back during DSM-IV). It would not surprise me if other people with social anxiety diagnosis (also) have ASD, but as usual if you can function in society with your current diagnosis (or lack of it), who cares, it isn't worth the hassle (time, money, effort).

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.

> 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.

Larry Ellison has an ASD diagnosis? TIL. The guy runs and breathes Oracle like a true psychopath. Then again, psychopaths and autistics can get along very well.

As for your other point. You need to overcome or work around your weaknesses. Everyone has to do such, but for some it requires more (out of the box thinking) effort. For example, I have ASD and get disgusted by certain foods (smelling or seeing them). I explained this to my employer and colleagues when I got hired (they were aware I am autistic). What they do is they ask if it's OK if they buy/eat X (I don't wanna get into the specifics) and I ACK it (usually). They know if I look weird or go away what's going on.

I think the point was Ellison was adopted, bracketing that with dyslexia, etc as an adversity. No one would ever accuse Bill Clinton of having autism.

> Larry Ellison has an ASD diagnosis? TIL.

Not to my knowledge, just was offering a counterpoint to the GP who seemed to think there are only negatives to adversity, like ASD. In that example "No benefits of [adversity]" Where the adversity of not being raised by your biological father might make you significantly more likely to be a billionaire or POTUS.

Thanks, I guess I missed some context. A billionaire, he is. A happy human being? A useful addition to society? I mean, all your examples have controversies but this one seems to stand out. Speaking of outliers: it lacks statistical analysis. I don't think anyone would argue a man not raised by their biological father cannot be successful (if we describe billionaire or POTUS as successful). Rather, what is the % of highly successful compared to men being raised by their biological father highly successful. We can at least apply statistical analysis on that, combined with a definition of successful (cause mine is guaranteed different because mine includes ethics and values it much higher than power or networth); we can't on autism because of undiagnosed people, while diagnosis also denotes some kind of impact or severity (incentive to become true positive). Ie. there are likely loads of people on the spectrum yet functioning (false negative). Then there's those who can't afford a diagnosis (false negative), and then there's the misdiagnosed (false positive/negative).

> A billionaire, he is. A happy human being? A useful addition to society?

haha. personally never really met any of them so can't really touch that : )

> I don't think anyone would argue a man not raised by their biological father cannot be successful

Not only successful, but significantly more likely to be meteoriticy successful from the adversity.

For other claims, sure the waters get muddy but the lack of ground truth is less relevant for the extreme success case. Aspies are wayyyy over represented in the top 10 richest people.

People think “High-functioning Autism” means they’re savants… Some terminology choices can yield comical misinterpretations.

Your comment comes across as condescending, full of assumptioms, and plain ignorant but I want to address them.

Let me start with an analogy. Imagine the brain as a circle. That's the brain of a normal person (sometimes called normie in quich vocabulary). The brain of someome on the spectrum is oval instead. Society assumes all brains are circles, and is build around that. Does that make ovales useless? Only if you look at it from the myopic point of view of society assuming and requiring circles.

You furthermore say 'Asperger to me means X'. Asperger was (DSM-V ditched it) a description of traits and the person with an Asperger's diagnosis checks some of these boxes, but everyone's different [1]. You zoomed in on one specific trait, but ignore the rest. I'll leave it to you to judge on what that says on your capability to assess Asperger traits.

My father had MS. He ended up in a wheelchair, but he didn't start in one. MS is a disease, autism is a personality trait. You cannot cure the latter (they can't cure MS either, only stop the progression but that's specific to some diseases and perhaps one day the scientific community overcomes that hurdle). The brain size/shape is what it is which is why some people who are autistic insist in them being called autistic instead of them having autism. I try to be relaxed when it comes to language, but my wife (also diagnosed with) has a different take on matters. Since autism and Asperger's has its pros and cons, calling it solely a disability is myopic and, if extrapolated, outright condescending and flat out ignorant.

Back about my wheelchair father, growing up with a father who is chronically ill and who tries to find peace around it gave me compassion and respect for disabled people, or those who are in need. Not only that, the old man was legally blind. His hearing though! He probably had undiagnosed autism, but he could hear details and draw conclusions from such which I could not. Because I was not trained in it as a blind person.

People who call Asperger's their super power are just boasting they are able to benefit from their oval more than it harms them, or so they are trying to imply such. There's probably a context to such a situation, and perhaps an other reason it annoys you.

[1] In a support group for people with ASD (after properly diagnosed) the diversity, hurdles, and benefits become clear. There's common grounds, but also so many differences! I have this with my wife who is diagnosed as well (^2)

Let's be honest, all of this is really motivated by empathy, the goal is to avoid thinking of people with ASD as "worse" than other people.

The reality is that nobody would want their child be autistic. People with autism have an extremely high unemployment rate. So clearly, it's not a neutral personality trait. You don't get diagnosed with a personality trait.

I say this despite suspecting that I could be on the spectrum. But I'm annoyed by the trend of bending reality just because it makes people feel better.

> Let's be honest, all of this is really motivated by empathy, the goal is to avoid thinking of people with ASD as "worse" than other people.

In general, in discussions, there's a lack of empathy, and I believe its valuable to build develop such.

Creating empathy was indeed part of my motivation. It also puts emphasis on a supply and demand issue.

> The reality is that nobody would want their child be autistic

My wife and I are autistic. Its likely (but not guaranteed) our 2 children are autistic.

According to your statement, in your humble opinion, not only should I not have been born, we should not have gotten children (we did use double folic acid dose on second because scientific research suggests it helps against certain autism traits which are perceived as negative. On first we did not yet know we had ASD though we suspected it and were on waiting list for diagnosis) because of the high risk of neurodiversive children. Some of my wife's friends said the same. Thanks for the advice.

That being said, yes I would have been deeply unhappy with a child born with a severe disability, for example syndrome of down. My wife would have been happy. We likely would have split up because if that, its a risk we took. But I recognize it is my view on syndrome of down, and my issue with dealing with it (not sure why... I grew up with neighbor kid having it). Its kind if like I am biased against it, generalizing. Even though I saw a beautiful film about it: Yo, Tambien. The issue lies with me, not people with syndrome of down. And perhaps, maybe a bonding process would have successfully happened because with my 2 children it is difficult to fathom I would not love them for how they are. Annoyed at times? Sure, but that is a given.

> People with autism have an extremely high unemployment rate. So clearly, it's not a neutral personality trait. You don't get diagnosed with a personality trait.

(Unemployment is at an all time low in my country.)

Employment isn't what defines you in life, in my opinion. Unemployment is a supply and demand issue with only losing parties (unemployed, society, government). Not only one losing party. It doesn't have to be this way. I am convinced every human wants to be functional in society, with respect to their being (things they cannot change). In my country, companies need to hire a percentage of their employees as disabled people, and they need to work around the negative connotations of their disabilities. That doesn't imply they're bad employees though. Just that they have a different manual.

Thing is, I went to an education where everyone had an autism diagnosis. I have seen diversity in neurodiversity. I have met people on the spectrum who have high potential, or who have achieved such. After I finished education I got hired because I am on the spectrum, and I function. My colleagues are happy with me as their co-employee, and I love being part of this team.

In short, supply and demand was met.

> I say this despite suspecting that I could be on the spectrum.

So, your post is some kind of possible self ridiculing? What you said is akin to saying people of colour [a trait you are born with] are subhumans, then saying you might have some lineage if some foreign culture, or that you are a POC yourself, or got friends who are POC. Chapeau.

Well, the way I see it, the difference between autism and anxiety disorder, OCD or insomnia is that autism is seen as an inherent, unchangeable part of ones identity. It's who you are, not something you have.

So autism being considered negative is much more harmful and damaging to the person's psyche than anxiety disorder for example.

Which is why there's been a push for normalizing and destigmatizing autism. Similar is true for LGBT+. It's why racism is considered so harmful - it's very hard and unsettling to think of yourself as inferior to others.

My problem is that I think this push has gone too far, to the point where reality is being bended.

> My problem is that I think this push has gone too far, to the point where reality is being bended.

I think it still has a very long way to go before it can actually start bending the other way.

A personality disorder is also something which usually lasts your entire lifetime. We need to work around our disabilities, whether its being in a wheelchair, deaf or bad hearing, insomnia, anxiety, or something else. There's various ways to do that, for example learning more about your disorder from credible sources, cognitive therapy, drugs/medicine, or an aid/device such as a hearing aid, or good ol' helping each other out.

Example of the latter: a friend of my wife is autistic (proper diagnosis, in fact they met during post-diagnosis support group), too, and he can work (he has own company), but he is unable to clean his house. Its too much chaos for him. So my wife does it for the time being, as his housemaid couldn't deal with him, and recently quit. And soon, my wife is getting paid for that work. Because of that, we'll both officially work, and we get free morning daycare for our toddler instead of having to shell out 200 EUR/month. Its a win-win-win.

> autism is a personality trait.

> The brain size/shape is what it is which is why some people who are autistic insist in them being called autistic instead of them having autism.

> Since autism and Asperger's has its pros and cons, calling it solely a disability is myopic and, if extrapolated, outright condescending and flat out ignorant.

I think I'd be more comfortable with people calling it a disability than people calling it a personality trait... That feeds into the point that the article is addressing.

Right, I missed a mark there. Rather it would be a list of personality traits being linked to autism. Neurodevelopmental disability or neurodevelopmental disorder fits better (implies incurable), but it has a negative connotation; precisely what I wanted to address.

The article could have used a 3D cube to describe the spectrum. Then you get the colors and tints of it. Some people describe all the traits with spectrum, some severity of specific trait. 3D cube covers both, kind of like a 3D spectrogram, just multiple charts. The text then becomes context, and you immediately notice visually the differences. Context is still very much relevant though.

I thought the article was good but missed the mark on the comparson of suffering. In general, high functioning autistics are (seemingly) more intelligent, and intelligent people seem to suffer more from things like depression, weight of the world being on their shoulders. My 3 y.o. (who appears to be intelligent and likely on spectrum) doesn't realize such yet. Innocence is a blessing in disguise.

> 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.

I don't really like the whole 'ADHD is my superpower' line either.

There are issues with the medicalization of neurodivergence, too, but nobody is obligated to feel like being neurodivergent is 'really a blessing' in their own case.

> Don’t destroy that by getting into a semantic debate.

And you've just done... what exactly?

Also only about half of autism cases present with differences in sensory sensitivity. Not a core feature of autism.

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.

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.

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...

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/hom...

https://www.fao.org/worldfoodsituation/foodpricesindex/en/

Can you give one example?

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.

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.

It does come off as a bit kneejerk, huh. There's this like, cultural thing where folks just get mad at people who do things they don't understand, especially when they perceive it as 'dumb'.

My question to that is; why on earth do you care what other people choose to do and why? I get that there was an argument made here to that effect, but for real, nobody is suffering from other people eating less gluten. I know I'm not and I love me a good bagel.

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.)

I'm pretty sure that's it. But good luck explaining this to a believer.

Gluten is an important dietary protein source for vegetarians and vegans.

What makes it important?

Isn't protein really easy to get from veges? Like chickpeas, tofu, tempeh, quinoa, edamame, lentils, etc

It's crazy to me how all of these examples are either legumes or legume derivatives, and the one exception (quinoa) actually isn't a very good source of protein.

Autistic persons may get complications from eating gluten, because it may not break down completely and instead forms gliadorphin (gluteomorphin), which is a morphine peptide. It causes damage to intestinal villi and reduces gut motility, hiding the damage.

That is theorised to happen to anybody, not just autistic people, and might be the cause of the IBS epidemic and so many people diagnosing themselves as gluten intolerant even if they're not full blown coeliac.

I am gluten tolerant and my life was absolutely totally unaffected.

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

Open the gates, I say. Everyone can be anything.

And then when everyone is everything then no one is anything.

Awesome sounds good to me. Labels don’t make the person, actions do.

Labels are what we use to categorize and assign meaning to the world, like it or not.

Think about it - without an "autism" label, how do we communicate or think clearly about research, diagnosis, treatment, and social structures to help people who suffer with this category of symptoms?

It's like talking about coding or doing math without variables, making decisions without criteria, or reasoning philosophically without definitions. Coherent thinking relies on the ability to categorize and label.

Maybe in research for disease or other things, but in my opinion labeling people doesn’t turn out well. Communist, socialist, fascist, etc. Disabled, gay, straight, white, brown, black; those labels don’t help much. Even labels like engineers vs. developers causes friction. Sure, medical doctors can use labels to separate people so that they can then investigate within a group what’s causing some disease, but a hundred years ago they used to label certain people as having a disease where today we see was incorrect, like labeling promiscuous women or labeling someone we might see today as autistic as having a problem with their brain that caused them to be inferior. You can’t always just take the rational approach that labels don’t cause real issues, since not everyone is rational. Labels cause problems when applied too liberally, and making sense of the world isn’t always necessary in that respect. We need to focus on what’s important, not always categorizing every little thing based on our idea of importance we assign to those labels. Labels have a way of sticking, and mislabeling things can’t always be corrected.

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.

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.

And it's not just restaurants -- the grocery stores are loaded with options that they didn't previously have.

Similarly - the keto fad has been an absolute boon for diabetics.

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.

If that's how they treat allergens in their food then they deserve to lose their licenses.

All of my experience with working at or with restaurants suggests they deserve to lose their license, but this issue is worse than most.

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.

> 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!

> after reading orwell's down and about in london and paris

... which you can do here:

https://www.fadedpage.com/showbook.php?pid=20180314

... and here:

https://gutenberg.net.au/ebooks01/0100171.txt

... and here:

https://web.archive.org/web/20121010092154/http://www.george...

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.

My friend who has celiatide said his life improved when it became known and popular. Food is more available and cheaper for him. He has more options too.

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!

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?

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.

No personally, but I think an expert could analyze a couple for pregnancy risks and other issues at least. From what I've read in the past the risk goes up a bit, but not terribly significantly, so it's best to make people at least aware of the risks. Certainly at least not to the extent to force stop people from having kids!

I think more than a third of ASD cases were estimated be linked to assortive mating in some studies, which is still a lot of cases that wouldn't happen if we changed out dating strategies! Intuitively this will only get worse with how everyone currently dates - dating until we finds the exact perfect match for our soul. The science is still very speculative but do we want time to tell?

We know for a fact that if both of your parents have African ancestry you have a higher risk of sickle-cell anemia, and if both your parents are Ashkenazi Jews you have a higher risk of Tay-Sachs. Should they also not be allowed to have children with each other? Frankly I find the notion shocking.

There is no ethical alternative to voluntary assortative mating unless you want to legalize nonconsensual sex.

Well the other one would be forced sterilizations but that doesn’t sound a lot better.

I think all anyone is talking about here is awareness of the likelihood. Sounds reasonable to me.

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.

> 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.

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.

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".

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

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.

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?

Good point. I don’t really know if it is gluten. I hadn’t thought of that!

There are different kinds of intolerance. Some people have mild allergies to gluten, which is very different from celiac disease.

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.

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.

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.

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.

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.

Autistic people are not more "rational" in the sense of having better arguments.

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.

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.

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.

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.

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.

It's more than just "attention", it's about feeling individually special.

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.

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.

Funny because narcissism can be debilitating. Narcissistic personality disorder completely ruins a persons ability to have even just one healthy human interaction or relationship.

Actually that’s interesting because logically it implies that anybody seeking diagnosis is in fact impaired.

I never mentioned that a narcissist would seek a diagnosis for their disorder, only that their disorder can be debilitating.

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.

Narcissism != Narcissistic Personality Disorder. A person that lacks narcissism will have a lot of problems.

You are fighting trend of making up diagnosis by making up diagnosis based on single assumed data point?

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.

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.

Ok sure but the notion that you are the best you you can be is also originating in America too

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.

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.

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.)

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.

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

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.

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.

> 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.

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.

I've spent all my adulthood thinking I'm lazy and something is wrong with me and I need to work harder at it. I can't be bothered to tell all my life story right now, but look into ADHD. It's been a revelation the moment I've learned my condition has a name and there is a chance for a normal life for me. Good luck

Ironically many autistic people seek to avoid or moderate attention rather than craving it.

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.

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.

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.

“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.”

> 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.

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.

I didn't say F1 car.

> 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.

Not with that attitude you can’t.

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".

It didn't just mean Non-Autistic though, people who are non-(autistic, bipolar, schizophrenic, adhd, etc, etc, etc.) are NT.

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.

> 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.

I completely agree.

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.

Im pretty sure all the other ones you talk about refer to them selves as "actually autistic people".

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.

It's the government's fault for refusing to expand licensing enough that there's a reasonable supply of doctors for even intake apointments.

> 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?

Because I had a diagnosis in another country a decade ago.

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.

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.

It does makes sense, sadly.

I’m surprised people are seeking diagnosis just to have the label. What actual benefits are they getting?

An excuse to not have to live up to standard societal "norms". An explanation for why life seems hard.

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.

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.

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.

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.

Isn't what he says actually proving he is on the spectrum? The thought process sounds familiar.

> 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).

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.

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.

> 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.

I did misread it, my bad.

> ADHD and High Functioning Autism both can share, on the surface, similar sensory processing issues, anxiety, and obsessive thinking in my experience

ADHD and autism also have significant comorbidity, though its possible only one or the other is initially diagnosed when they coöccur.

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.

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.

Be specific. What exact resources do you want access to?

Oh, I'm sorry. I didn't realize that I was answerable to you.

Do you treat all marginalized groups this way?

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.

This is an internet forum with strangers. For the record, demanding personal details is taboo.

Since they're a stranger, what's taboo about it? I can't imagine anyone being doxxed by the additional information requested...

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".

> 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

Thank you! I had only heard this from Scooter, and didn’t know the original source.

https://youtu.be/4YxTa1AUqps

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.

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

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.

I have trouble understanding what status seeking ends would be served by getting a diagnosis.

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.

Why do you need to waste your time and money when typing “#actuallyautistic” into the box is free?

What status is conferred by having autism?

No clue, but it's a thing.

You keep talking about "status seekers", but you can't define what you think they believe they're after in trying to obtain that status?

If nothing else, makes me wonder if I missed out on a "welcome packet" or something I didn't know I was supposed to get. :P

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.”

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.

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.

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.

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!

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?!".

It's true, gay people only come out as a sweet status symbol to own all the hets. /s

> If I work as a disability officer, it's probably somewhat important my email byline has a disability

It's not.

> Uh..aren't they both pretty big status symbols?

I wonder what makes people deluded enough to believe that.

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...

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.

Sounds like ADHD to me, FWIW!

Hope you find some tools and understanding in the coming year.

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.

I still don’t get why Asperger is seen as a subgroup of Autism.

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.)

I didn't understand that - "not a separate unit". What is the relation between Asperger's and Autism?

Asperger's has been eliminated as a diagnosis altogether.

Thanks.

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.

All true, but there were actual diagnostic criteria that could be used to differentiate the subgroup from the larger one.

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.

We need more sub-types of such a wide-ranging disorder, not fewer. It's likely autism includes combinations of several types of distinct issues anyway.

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.

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.

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.

The whole article is about how it's not a continuum but a set of discrete unrelated traits.

And it chooses language that undermines or at least clashes with its point, e.g.,

> Red isn’t “more spectrum” than green or blue. Apples aren’t “more fruit” than oranges. That’s not how it works.

Red 'is' in fact 'more wavelength' than green or blue. That's exactly how it works.

The confusion the author bemoans comes from people actually knowing what characterizes a spectrum in general and taking that to apply when they hear the phrase 'autism spectrum'. The phrase itself is misleading.

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.

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.

Even the color spectrum depicted in the article misses magenta, due to it being a color made of two frequencies, not just one.

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.

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.

Goethe vs Newton all over again!

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.

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).

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.

>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...

Reminds me of George Carlin.

Warning: politically incorrect content ahead.

https://www.youtube.com/watch?v=mUvdXxhLPa8

>Interesting point. 100 years ago “idiot” and “mental retardation” were medical diagnoses.

"Mental retardation" was the proper and polite lay term in my lifetime. It was only in 2010 that government agencies started removing the word "retardation" from their names. (See: Rosa's Law)

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.

> 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.

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.

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

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...

In general, spectrum is an infinitely-dimensional vector space. For each frequency, you get a value.

Using "spectrum" for a "scalar" is a misnomer.

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.

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.

> 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.

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 ...

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.“

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.

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.

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).

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.

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.

These are all generalities. We still have not seen any explanation of what psychological gradient you think underlies the autism spectrum specifically :)

The article touches on it. This TEDx talk goes into more depth below the "gradient" level: https://www.youtube.com/watch?v=cF2dhWWUyQ4

I won't claim to be an expert how it differentiates across "groups" of people. I do care a bit about keeping an open mind and try to see multiple perspectives at the same time though. But yes, that often makes it more general and less powerful (one-sided).

The article here is all about arguing against what you have been saying: its author argues that the autism spectrum is not "a typical spectrum [that] is the exact same thing as gradients of frequencies" - or a gradient of anything else, for that matter. This is, in fact, the main point of the article! Carrie Beckwith-Fellows' TED talk does not address this issue at all: she makes an analogy to the color spectrum, but there is no indication that this analogy extends to there being an underlying gradient analogous to frequency. Both author and speaker argue that even the conflation of the somewhat pop-sci gradient of high/low functioning with the spectrum is a misunderstanding!

I think the important message from both people here is not that there is no gradient - of "functioning", stress, or something else - but that it is / they are largely orthogonal to the dimension plotted out by the spectrum's categorical values.

At this point, I think we're just talking beside each other's points. My first post, as a reply to other posts, is just about spectrum and gradients, really being the same, but there's a duality between the continuous frequencies/gradients and the perceptions of colors. I'm being general, whereas you are pointing out problems with too general models (or aggregates for that matter). I don't disagree with that.

To attempt to reply though: There doesn't need to be a psychological variable, there just need to be made one or more tests that scores aggregates. However, as the article and TEDx talk says, a number or two would not paint the whole picture of a complex socio-psychological issue.

My very first reply to you was to point out that your generality - “a typical spectrum is the exact same thing as gradients of frequencies” - does not appear to apply in this case, and I am glad to see that we now seem to be in agreement on this.

Your second paragraph appears to be broadly in agreement with my point (which is merely a paraphrase of the author, believe) that, in this case, the gradients of quantitative test scores are largely orthogonal to the spectrum’s categorical variables. Even if one could combine them to get a meaningful aggregate score (which I suspect you can do, though only to some extent), you cannot tell from that score what aspects of the spectrum describe the subject.

For sure. Note, I never disagreed with the author, and even provided links of my own. Not every post is a disagreement, at least not from me ;)

From the TEDx-talk, it does seem like the typical spectrum/gradient understanding is lacking in terms of being meaningful for individuals. Maybe because it's a sort of score as seen from the outside, and not even very precise one at that.

Also, society also needs to accommodate and improve understanding of diversity, rather than expecting everyone to be clones of each other. The latter doesn't work that well, since we're then not encouraging people's natural strengths and creativity.

> Note, I never disagreed with the author…

Well, it was certainly hard to see it any other way:

Author:

The spectrum is not a gradient.

From your first reply:

A typical spectrum is the exact same thing as gradients of frequencies.

As your reply did not explicitly make this claim about the autism spectrum, it nominally did not directly contradict the author, but if it was not about the autism spectrum, then it was utterly pointless to raise it here - and, furthermore, it took several promptings on my part before you addressed this issue.

With regard to your second paragraph, I completely agree.

Sure, but I found this phrase a bit bombastic: "The spectrum is not a gradient." Good find though, that was probably what sparked the sub-thread.

I replied to you in further posts that I see both perspectives. So can now conclude I don't see it as just one way because it depends on your frame of reference / POV / state of mind.

Maybe it was pointless when I didn't really relate it directly to autism at first, and I didn't mean to go into a discussion of it being either that or the other in the first place.

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.

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.

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.

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.

> ”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.

Arguably one might, but one would be being uselessly tendentious in so doing.

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.

> 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.

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.

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.

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?

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.

This comment may come out wrong, but it is intended as an honest question (at the end) on this topic (whether it be autism or ADHD)...

Speaking only for my self, my own perceptions, and very little knowledge or understanding of what such a diagnosis _actually_ means, I think the biggest "issue" (or misunderstanding) I have is with respect to how it "dumbed-down" to non professionals.

I liken most of the comments I hear - and read (online, in news/articles) - about autism to those of astrology: literally these are traits that describe every last person who has ever lived. It's just a matter of what side of the bed you happened to wake up on that day. For example, I literally just googled "autism symptoms" and the first link is to the CDC, which quickly summarized the following (highlighting a few).

And before I list these, please know I'm not knocking or attempting to belittle the following items as opposed to noting what myself - and likely many, many others - initially think when they hear something phrases like those being written in an article or stated by a "random" parent.

* Avoids or does not keep eye contact - literally so many people I know who just aren't very assertive or are extra shy

* Does not share interests with others - so, only children who grow up learning to play alone?

* Lines up toys or other objects and gets upset when order is changed - I dislike things in my house not being symmetric, so what?

* Plays with toys the same way every time - kids _love_ repetition

* Has obsessive interests - like me and programming at age 6?

* Must follow certain routines - most kids thrive off routine and schedules

Then there's an entire list of things that parents likely should never look at because they're mind will instantly jump to "my kid has autism" and think they should be treated special:

* Delayed <insert whatever skill here> - everyone develop and different rates

* Usually eating/sleeping habits - seriously? as compared to...?

* Constipation - really?

* Lack of fear or more than expected - so pretty much "different than me?"

I'm HONESTLY ASKING what people who have this condition (or parents/siblings of them) would like those of us who only have these dumbed-down snippets to know about them and think about instead? If I can train myself to think of X whenever I hear symptom Y then I think things will be better. But right now, the best I can do is just remind myself "what do I know?" and try and be helpful.

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

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.

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

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.

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.

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.

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.

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.

> 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.

>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

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.

I don't know. If you are a "little" autistic, you don't have as many issues. I get that you have lots of issues, just not as many as say, someone who is non-verbal.

What would be the point of doing away with the word "mildly" because aren't you then downplaying what severe autism looks like? So aren't they just saying that the support structure for "mildly" autistic people isn't strong enough?

Seems like a really indirect way to say such a thing.

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.

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.

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

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

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.

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.

Photographers and journalists are people who's time is rewarded with money as compensation, as well as fame and status in some cases. This follows in line with the claim --

>>>"People are transactional and do not have time for one's long and detailed explanation of a self definition unless their time is rewarded in some way."

People who are just empathetic or curious, sure. I will not deny those scenarios exist.

But the fact they chose that career often implies they like it. The transactional nature of living wages is always there but let's not forget careers can be picked.

In particular, art is something you usually don't do for money, and even though journalists can be uninterested, there are 'good' ones who are there because of their interest in the world around them, the facts, opinions and viewpoints.

I am reasonable enough to see truth in both sides of this argument. Not bad.

> I acknowledge no one cares about my hardships

Me taking the time to type this disproves that.

> Healthy, functional people are just looking for ways to get further ahead in life.

All other people are doing the same thing.

> Happy holidays.

You too mate. Hope it starts looking up for you soon. It's never too late to find happiness. It comes from where you least expect it.

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

The author requests a very reasonable and long overdue change from the scientific and medical world:

> In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse.

Please, please break autism into distinct disorders. So much harm is being done by having such a wide spectrum.

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

But I suspect I'm taking the analogy too far

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.

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

>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.

I don't mind the assumptions. I don't think we are unfairly characterized.

What we are is unfairly treated most of the time.

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

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.

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

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

How is that supposed to make sense?

I'm not clear on your question.

The point is that autism could be the consequence of damage to nerve cells. When given to an adult, a stroke may cause physical and mental issues. The same would be the case for a child, but (especially for young children) the symptoms would appear differently.

> 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?

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:

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