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Comment by kosma | Hacker News Reader

It's not a false hope for autism; it's a false hope for parents of autistic kids. Autism is not a mysterious affliction that takes entire families in its hold and shouldn't be portrayed as such.

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I mean, it depends. Autism is a spectrum disorder. There are people with autism who are fully functional and successful members of society. And there are people with autism who are incapable of speaking or communicating. For people with very severe autism the world is a constant assault on their senses, making it nearly impossible for them to interact with others.

Yes, exactly. My friend is working as rehabilitation specialist for autistic kids, and from what she tells me life for those kids is nothing like typical HN meme 'autism is my superpower' implies.

Except when it is.

As an autistic adult, it's frustrating to me that high-functioning autistics and parents/caregivers of low-functioning autistics never seem to realize that the other kind exists. You wind up with people insisting that perfectly functional human beings need to be cured, which those same human beings insist that there's nothing wrong with a kid who can't speak or dress himself at age 10.

This is why I feel like merging Asperger's into Autism was a mistake. When some people say Autism, they mean being slightly non-neurotypical in a way that maybe adds some challenges to the person's life, but is more of a difference than a disability. When other people say Autism they mean severe behavioural and cognitive difficulties and round-the-clock specialist care. Each of these people is speaking from their own experience and yet this one label covers an incredibly wide range of implications.

> This is why I feel like merging Asperger's into Autism was a mistake.

Merging Asperger's into Autism was the natural result of finally evaluating all of his research. This shows that he always worked with persons who are at all parts of the spectrum, including the worst cases people think about when they hear autism. Historical circumstances led to him being very popular for the "light" cases (i.e. the cases which didn't lead to immediate termination of life under the Third Reich), but the body of his research shows that he always was aware of the full nature of it. Unlike people who split it in autism, high-functioning autism, Asperger and whatever "separate" things they found.

I can understand why they changed the definitions, because both conditions have the same root cause (an issue with sensory processing) but I think it was a mistake. You've got a completely different presentation, and completely different treatments. So now any research into developing new therapies for autism will have to specify which subset of Autism spectrum disorder they are targeting, subsets which may not be well defined or consistent. I think eventually they will carve out sub-categories of autism based on which therapies they best respond to.

I honestly can't believe this is the top voted comment. There's a world of difference between HNers who've self-diagnosed themselves as autistic because they're a bit socially awkward and people like my severely autistic friend who needs specialist care and for whom life is a constant struggle.

It's incredibly insulting, actually.

In some, autism manifests as constant screaming, violent outbursts, or meltdowns. Many are non-verbal. Keep that in mind.

Are you a family member of a severely, dysfunctionally autistic kid? You can't act like these families don't suffer to some degree.

No, it doesn't necessarily "take entire families in its hold", but its effects on how you coexist with the world are nontrivial.

Autism is at best as much fun as being born with arthritis.

> Autism is at best as much fun as being born with arthritis.

...for some but not all autistic people.

That's a nice, negative outlook and seeing as this is based on personal observation (ie anecdotes) and you made a grand sweeping statement: It's not hard to see that you are wrong if you've spent any time interacting with someone on the spectrum that has found a spot in society they fit into.

I'd say that this is no different for neurotypical people. If you find a good place where you can work and someone can pay you for it, and you can furnish your life in such a way that it doesn't clash with you, then you will be happy. Your premise that it compares at all to something that gives someone constant low-key pain is spurious and does a disservice to the fine human beings it refers to.

I'm talking about falling into the uncanny valley of appearing almost human, and creeping people out.

I'm talking about getting blindsided by some bad noise or light or thing moving wrong, and having to leave right in the middle of something.

I'm talking about remembering to actively suppress your urge to rock or fidget, because otherwise people will start treating you like you're nuts.

I'm talking about not knowing that people are pissed off at you, for weeks, even years, even though everyone around you knows it, but won't say anything because you're expected to know.

I'm talking about not being able to look in someone's eyes, but knowing you're expected to, and some days it's especially hard.

I'm talking about the room suddenly becoming silent, again, and you're left wondering what you fucked up this time.

I'm talking about relationships slowly going off the rails because you can't seem to express yourself properly, and the other person, though trying to be understanding, is losing patience.

Like arthritis, it creeps and moves, and some things are painful one day, not painful the next. But it's ever present, and catches you unaware.

I just want to say that you captured the pain and suffering you feel very well here. This is very well put, it's beautiful and poetic in its own way, and it really helped me understand how you must feel.

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