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anbuend
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Joined: 5 Jul 2004
Age: 43
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06 Jun 2008, 11:44 pm

equinn wrote:
What you've said supports the idea that the less engagement/awareness of people, the more stimming will take place despite onlookers. The more verbal and engaged with environment (more specifically people/peers), the less stimming (as you mentioned). You must have had some awareness of those around you and concern about stimming in front of them. So, you waited until you got home, right?


No, I didn't. There was no way I could wait that long. I just ran off by myself a lot or into bathrooms. And it doesn't take huge enormous amounts of social awareness to notice that being screamed at when you do certain things is unpleasant (and then, if you're capable of changing things, you might well do so). And as I said, I couldn't always (or even necessarily usually) succeed.

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A nonverbal, lower functioning autistic will NOT be able to wait or care about who is around him/her.


How do you know whether it's a matter of caring or not being aware of people? I can't wait now at all, so I look like I don't care (by your standards) even when I do. This is exactly what I find so infuriating about these generalizations: They presume things that can be incredibly harmful when presumed about autistic people, and that are not based on actual evidence but are based on what people think is happening inside other people's heads.

For that matter, by the way, there are times I don't stim now, and it's because, generally, my body isn't doing that right then, not becuase I've magically gained social awareness and suppressed them. I can't create them out of nothing and I can't suppress them when they're there, those abilities are gone a long time ago and were pretty flimsy even when they existed.

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There is a real difference between these two people diagnosed with autism. That's why it's called a spectrum.


What 'two people'?

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It wasn't always a spectrum.


Yes, it was. At least, ever since Kanner wrote about autism, it was a quite a wide array of people. (Most of whom had speech abnormalities but no speech delay.)

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You were either autistic and this meant nonveral, mentally ret*d or psychotic. Now, since the 1990's, you can be higher functioning, extremely verbal and still have autistic traits.


More like since the 1940s.

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Asperger mentions in his writings, a person can possess high cognitive abilities and have autism and this same person functions on the higher end of the spectrum. I'm not making this up. It's all there in Asperger's research and, now, in the DSM IV.


Kanner described his patients as having "good cognitive potentialities", one of them had an IQ of 140, one of them was an extremely early reader, all of them showed high abilities at various tasks requiring the intellect. I'm not making this up either. Nor am I making up the fact that the DSM-IV has never required a diagnosis of an intellectual disability in an autistic person. And even prior to the DSM-IV, you have both Kanner and Asperger describing autistic children repeatedly as intelligent, you even have those obnoxious psychoanalytic types like Frances Tustin in the early 1970s saying that the difference between autistic and other "psychotic" children was that autistic children usually had normal or above-normal IQ scores. And now you've got Mottron's work in Canada showing that on non-language-biased IQ tests (where most people get the same scores as on language-biased ones) even most autistic people who did score low on other tests score at least in the normal range of the less language-biased ones.

I'm not saying these things out of nowhere. I've actually read a lot of the original sources, instead of relying on people's later interpretations of them. I've also been aware that even in the original sources there were many conclusions made that were totally unwarranted and that have taken decades to un-make. The newer research is showing, for instance, normal levels of attachment to parents among autistic children, high levels of attempts to communicate things among very young non-verbal autistic children, and a lot of other things that you would categorize out of existence.

These aren't "new types" of autistic people, either -- these are the same sorts of people who used to be called unaware of people, non-communicative, etc. It's important to be really careful, instead of reading "This person paid no attention to other people" or "This person treated people like furniture," to read what the person did do. The actions, not the interpretations of the actions. There's been vast damage done to autistic people throughout the entire time autistic people have been noted as existing, by people who didn't go back and check those interpretations to see if they were really accurate.

That's why you can get stuff as nonsensical as Kanner's notion that someone didn't listen to people but was able to follow their instructions, and that another person didn't notice anyone but was requesting things of them verbally. And as nonsensical as the notion that if autistic people who are unable to hide our mannerisms are less aware of people than autistic people who are able to hide them. Yes, it does take some awareness (but at minimum only awareness of cause and effect, not awareness of people) to hide them, but it takes more than awareness. It also takes the ability to do so.

The problem is that when you don't actually check what they think they know against what they actually see, you don't notice this. You just take their word for it that people weren't aware of people, even as they were doing things that demonstrated a fair bit of awareness of people. And this is how bad research gets passed on literally for generations before someone takes another look at it. This is why I've read papers dating from the 1940s all the way up to the present day on the topic of autism and seen how the assumptions played out over time and tried to trace them back to their origins to see why they persisted so long and what they were even based on to begin with. (Sometimes it's obvious, sometimes they just relay the assumption without relaying their actual observations.) And the reality of what was observed sometimes has nothing to do with the assumptions that were made, at all.

And many of these assumptions aren't just wrong based on individual variation, they're wrong period, or wrong for most autistic people. They're quite often wrong about the exact same people that they're said to be the most right about -- not just wrong for "those high-functioning types".

I have to live with the consequences of the idea that if I don't use words it means I don't understand them (or that if I do use words it means I do understand them for that matter), if I stim it means I don't notice and/or care what people think of it, if I walk directly away from someone when they greet me then I don't know they exist, etc etc etc. Not to mention the idea that experiences that are all ones I've had at certain points in my life are mutually exclusive within the same autistic person because they're from two different "types", so-called, of autism. And I'm not the only one who has to live with this, so do all autistic people who end up on the wrong side of those assumptions. That's why I put so much effort into correcting them.


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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams