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Comment by shipman05 | Hacker News Reader

I understand the sentiment, but there's a reason it's called the autism spectrum.

I work with several software engineers with autism who are as capable as their peers. Sure they may have behavioral quirks, but not significantly more so than the normal variation in human behavior. Their brains don't seem to work in an inferior or problematic way, just different.

On the other hand, I have a close relative with more severe autism who could never read and understand this article, could never type a comment such as yours. She's incapable of holding a job or living on her own without assistance. Her mother passed away young, and her older sister, just 19 at the time, had to take on the responsibility of being her sole caregiver, and she will have that burden for the rest of their lives.

For some it may be a different variation of the human experience, but for cases as severe as my relative's, I find it hard to believe that a cure or prevention for autism wouldn't be a massive quality of life improvement for all involved.

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Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by.

I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats.

I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not.

The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees.

My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.

What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.

Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?

> My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.

> What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.

People like to say stuff like this on social media, but I can never quite figure out what they actually mean. Society emerges from interactions between people. If someone can’t communicate, how exactly are they supposed to participate fully in society? All people deserve love and support and dignity regardless of their ability to contribute economically, but I’m curious what this “reorientation” would actually mean in practice.

> If someone can’t communicate, how exactly are they supposed to participate fully in society?

It's not that autistic people cannot communicate, it's that we communicate differently.

For example, I cannot talk on the phone. I just can't. I could explain all the reasons why, but I feel very dismissed here so I'm not going to be vulnerable anymore, but suffice it to say it's something I cannot do, and a lot of autistic people cannot do.

This means people like us can't have jobs which require a lot of phone communication. Accommodations that would allow autistic people to communicate in their preferred way would lead to greater employment of autistic people, but such accommodations are rarely offered for various reasons.

It's other things too. For some people it's lights. For others it's a uniform. For others its noises. For instance, I can hardly go into grocery stores because they play loud music, there's a lot of noises from beeping registers, and the lights are bright and garish. All retailers are like this, and that's where many entry level jobs are. If I can hardly shop there without wearing sunglasses and headphones, then I could never work there because workers are not allowed to wear noise canceling headphones.

Then there are people who require service dogs. You'd think that would be a solved issue, but my friend was just denied entry to a place because of her legit service dog, not even an emotional support dog. They said she couldn't have one because she didn't look blind. Then what, she has to explain to some putz about her autism, expecting he'll understand? No, she backed off and went home and now she won't go out again. It took her that much just to go outside and she was turned away by some busybody, so it's back to being a recluse for a bit.

And that's another thing, is the world could be a lot more accepting of how ND people identify, that would go a long way too. My friend I just mentioned says that her experience as a transgender person is inextricable from her autism. I'm not sure what she means 100%, but also I do, autistic people have a complicated relationship with gender and sexual identity, and a lot of people are very very against those feelings. Autistic people who are transgender (there are many) have a hard time existing in public life because they are shamed, ridiculed, vilified, beaten, and even murdered for who they are. Do you think it's easy for someone who faces those dangers to be employed? There are many transgender homeless people who suffer as a result.

I could go on and on, but all of these things I've listed are ways in which autistic people are marginalized in society, and they don't necessitate "curing" autism to fix, or even really reorienting society as a whole. It's not because they cannot communicate, it's because they cannot participate fully in public life. The solution is to just let them participate in public life. To make things better for everyone involved, we can just be accepting of people's differences and not force them all to be one way, and support them when those differences mean they need help to survive. We can afford to do that as a society I think, why not, isn't that the point of the whole exercise?

Thank you for sharing that. I’m not going to address every example in your comment, and I agree that there are many ways society could be more accommodating. But I also think that not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it. Some jobs require you to talk on the phone, just like some jobs require you to lift heavy boxes. Not everyone can do that, and that’s ok. I can tell you with absolute certainty that I could not do my job as an engineering executive if I could not talk on the phone or video calls, since so much of my job is about making emotional connections with other people, understanding subtle cues and subtext, and influencing people. I have colleagues who I know are on the spectrum, and I greatly respect them and do try to accommodate them where possible. But some things require a level of social skills they simply don’t have.

Beyond that, I have to be honest: reading about your struggles with communication, lights, noise, etc. it’s frankly hard me to fathom why anyone would not want medication that can alleviate those symptoms. I was diagnosed with ADHD in my 30s, and my whole life suddenly made more sense. Stimulant medication dramatically improved my executive function, attention, concentration, impulsivity, etc. but I am still in every way myself while medicated. I am just more in control of myself. I realize there is no medication like that for autism yet, but if there was, I simply can’t imagine someone not wanting it when my life was improved so dramatically by treating my much-less-severe condition.

> not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it

That's why labor law generally has the concept of "reasonable accommodations" and core parts of the job. I don't think anyone is seriously saying that every disabled person can do any job.

I have ASD and a lot of this rings true.

For me personally, I can get to quite high levels of "socialness" depending on mood and practice. I can get to muster up the courage to do calls, interact more socially, flirt with someone etc. It does take an extreme amount of energy though.

Where I think it differs for me, is in that if I don't do this type of "social training" constantly, it completely goes away again. If I didn't call my doctor/the post office/relatives in a few months, the ability to just do it normally is gone again and I start from 0. Everytime.

My psychiatrist helps me get to that point again but over time has realized that "exposure therapy" doesn't really work because every few months we have to start from 0 again.

Now having all of that said, for most people these types of interactions and things in life are just... normal. They don't require even a second thought. And that, I would imagine, removes a lot of friction from their lives because these interactions are needed to be a self standing, emancipated, contributing member of society.

It's honestly even more subtle than this. I absolutely agree with you about talking on the phone. I avoid doing things when I know it will mean I have to call ahead - and I would much rather go down there in person and get looked at weird for making an appointment in person.

Yet I've worked 4 different call center jobs and had absolutely no issue talking to people on the phone there. (Probably largely because the "small-talk" in such a scenario is absolutely rote and mundane...)

Fast-forward to my current job (IT) and I hate answering the phone (or joining a meeting) again.

Thank you for sharing your story, that's heartbreaking.

The problem is there's no such thing as "Autism". It's a survey and observation of behaviors that "oh you don't quite behave like we see 90%+ of people to behave socially, so you must have a disease. Let's call it autism."

You are talking as if Autism was some sort of virus that you catch and it disables some people a bit, and others a lot.

Some people have hard time, then deal with those people and help them, based on the symptoms, but don't say you have to prevent some made up label to group certain set of behaviors which many are perfectly happy to be with those set of behaviors and perhaps even proud to be thinking differently than most.

or maybe your successful coworkers and your close relative have two completely distinct conditions that don’t actually exist along a continuum

Then people should stop conflating the two. This whole "spectrum" nonsense is nonsense. Your coworkers are not autistic - they are weird or whatever other more PC term you might want to use, and that's great - many, if not most, great engineers are!. There is no need to pathologize differences in people. Your relative, by contrast, is. If you have a habit of feeling sleepy at work, it's not like we say you're on the narcolepsy spectrum. It's just a completely dumb concept.

People like your relative, or the kid who sits around flapping his hand and starts freaking out if anybody interacts with him - those people are obviously not just 'weird'. They clearly have severe mental disorders, and if we want to call whatever it is that they have autism - fine. But if we do, then we need to stop calling people like your coworkers, Bill Gates, or whoever else also autistic.

> Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

https://www.nimh.nih.gov/health/topics/autism-spectrum-disor...

There is a continuous range of people in between. Where do you draw the line?

This is like asking where to draw the line when somebody is bald. Are you bald if you have 1 hair? Yes. 2? 3? 137? There's of course reasonable room for discretion in saying what is or isn't bald. But it isn't reasonable to say somebody with a full-on afro is on the spectrum of being bald.

Literally some of the most high functioning and successful individuals are being diagnosed as "on the spectrum" of what is, in its "real" form, a completely crippling and disabling condition that yields individuals who would have simply been classified as mentally retarded in the past. This is just completely nonsensical.

What you call "real" form is just a strong form, and there is no clear line to draw between real and not real autism, or between "completely crippling" and "not completely crippling", etc.

Many people are on the balding spectrum.

You could say that we all lose our hair eventually. Some of us are just temporarily hirsute.

Autism is defined by social communication and restrictive behavior - not functioning, why are you so caught up on the functioning side of it?

Because pathologizing and aiming to "treat" behavioral characteristics that are not only not harmful, but actively beneficial in many cases, is completely and utterly absurd. It'd be akin to something like, 'Oh you seem to be oddly content with your life. Have you gotten yourself screened for stoicitis? I hear there's some treatments available.' It's just nonsensical.

The reason behavioral characteristics are pathologized is because they near invariably result in "meaningful" harm to an individual or to others. And "meaningful" isn't a guy saying mean things because he doesn't care about your emotions, but rather a schizophrenic deciding to go start killing people because the voices in his head told him to.

I got my autism diagnosis in my early 20s (from a licensed psychologist, before you ask).

It was a life-changing experience for me. Suddenly I was able to understand and validate my experiences and shortcomings, and to improve myself based on that understanding, instead of resigning myself to the fact that I’ll always just be a ‘weird’ human with ‘weird’ opinions, feelings and experiences.

I suppose though that since a random guy on HN said so, this is actually impossible, and I should just go back to having the entirety of my lived experience dismissed as ‘weird’.

Gee, I’m sure glad we cleared that up.

Same here. After a diagnosis, one is able to give in and learn how to cope with it instead of fighting it, struggling and letting it lead to self deprecation.

Strategies and research about it aside, the fact that one can come to "accept" oneself despite that condition is very important for general mental health.

I still wouldn't wish it on anyone but personally I'd always accept my self as a valid human with a valid life despite that.

Why do you think things like astrology persisted for so long? If not for the Church (which banned astrological prediction as blasphemous contradicting religious belief in self determination), it'd almost certainly still be with us. In fact when founding modern psychology Jung was heavily influenced by astrology. See - astrological psychology. [1] And his earliest work was with schizophrenia, from which the invention of autism would shortly emerge as a form of 'mild schizophrenia.'

It's always the same game with pseudo sciences. It appeals to our biases or desires, which results in enough people turning off their skepticism (because they like or agree with what they hear) to let it perpetuate itself. In astrology no issue or problem was of your own nature or doing, it was merely because the stars were not aligned. That has gradually transitioned to being replaced by because you have this psychological classification, or that.

You are still the exact same weird person you were before the diagnoses, and you always will be. And that's perfectly normal, so to speak. The declining trend of real, and deep relations, in the West seems to have left many people failing to understand something. Everybody is weird. If you think somebody is "normal", that simply means you don't know them well enough. And weak autism diagnoses and treatment in modern times seems increasingly geared towards pushing people towards arguably undesirable traits (such as excessive emotiveness) while doing away with many traits and characteristics (such as singular focus, minimal susceptibility to emotionality, or obsessive attention to detail) that are highly beneficial for leading a productive and successful life.

[1] - https://en.wikipedia.org/wiki/Psychological_astrology

Yes all people are weird, and autistic people are people, so it's no surprise they are weird. I don't think this is a failing of Western imagination, I'm not sure who gave you this impression.

Autism isn't about being weird or quirky though -- it's a developmental disorder and the behaviors associated with it are disabling in our society. This is characterize as having "significant impact" on ability to function.

Well, no. Many of the behaviors associated with it, even the literal diagnostic criteria, are extremely beneficial in our society. It's not just a weird coincidence that many of the most successful tech, engineering and even business figures could be (and in multiple cases have been) diagnosed with autism of varying degrees, notably post-facto.

If anything I think the rampant over-diagnoses of middling cases is itself extremely harmful. Because it's going to lead otherwise perfectly viable humans to think that things are just out of their control because they have whatever the trending diagnoses in psychology is, and a diagnoses of failure becomes a self fulfilling prophecy. Suicide rates among those diagnosed with ASD, while having at least average intelligence, are ridiculously high. [2] Whatever is happening with these diagnoses is not this self affirmation bs people are spewing.

A bit more than a hundred years ago we'd have been having this topic, with the context of phrenology [1]. A nice little quote from that page: "Phrenology has been psychology's great faux pas. — J.C. Flugel (1933)." And so too will autism be. Until soon enough we might start to accept that psychology is not just a pseudo-science, but an exceptionally destructive one at that.

[1] - https://en.wikipedia.org/wiki/Phrenology

[2] - https://sparkforautism.org/discover_article/autism-suicide-r...

There’s this thing people online tend to do where they’ll take a well-defined word or phrase like autism spectrum disorder and just decide that it actually should mean something else and get mad when everyone else uses the word in the “wrong” way. It consistently derails conversations, and it almost never brings anyone around to a place of greater understanding.

I'm not arguing over the semantics. I am rejecting the entire concept in its overly broad state. Imagine somebody said 'Oh don't worry about your weird coworker. He's just acts that way because he's a Sagittarius.' Obviously you'd look at them pretty cockeyed. I'm not arguing about what a Sagittarius is, but rejecting the idea of it having a well enough defined meaning to ultimately mean anything. Of course millennia of people of all classes, including the founder of analytic psychology (who was quite enamored with astrology) would have strongly disagreed with me.

According to the CDC we're now up to about 3% of kids being "identified" as autistic. [1] In 2010 it was about half as many (per capita). And then in 2004 it was about half as many again. At this rate one can reasonably speak of a majority in the future. Which is quite silly. One of the main differences between a science and a pseudo-science is falsifiability. If an oncologist diagnoses you have a malignant tumor - this is falsifiable. It is either true, or false. You don't need a consensus or an opinion.

But in psychology, there is scarcely such a thing as falsifiability, especially in the overly broad diagnostics. This applies not only to diagnostic/analytical psychology, but even to contemporary research in psychology. Psychology is the butt of the replication crisis with even leading psychological journals seeing replication rates in the twenties. There's something very wrong with this field, and it can be largely explained by considering the fact that it may simply be a pseudo-science.

[1] - https://www.cdc.gov/ncbddd/autism/data.html

What you are seeing is the effect of acceptance and awareness, not overly broad diagnostic criteria. It's not reasonable to extrapolate from these rates to half the population.

We are talking about human brains and psyche here, not much is known, and it's hard to conduct falsifiable experiments. If this upsets you, don't concern yourself with such endeavors, who asked you? Not every truth is found through the scientific method. Others are telling you that their diagnosis gave them peace and understand, a foundation on which to build an identity. Why are you here trying to take that away from people? What is your reasoning for making these arguments?

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