I am starting to wonder how I am supposed to describe my brother, who is so autistic he can barely speak, has seizures and absences, cannot live independently, and suffers as a result of his disability. Because autism seems to be an identity and a superpower now.https://twitter.com/LauraMayCrane/status/1124225089371820032 …
I think it's pretty close to a general rule among American autistic advocates who have claimed the label for themselves without diagnosis, assessment, etc
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That has certainly not been my experience.
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Many of the people who claim the label for themselves without a formal diagnosis come to the realisation they're autistic themselves after a family member receives one.
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Others come to see themselves as autistic because they know autistic people from other contexts, and realise how much they have in common. Sometimes those autistic people are very decidedly disabled; sometimes less so. Either way, most understand highly disabled autistics exist.
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Right, but how many have spent a lot of time with autistic people with severe disabilities? And if they did, do you think that would change how they viewed the issues?
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I'm curious what you think of as severe. Because I have probably done them all. Do I not get to be an expert if I was there, experiencing it? Or is the fact that I can use text as a means of communication invalidate my experience?
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The lad I helped looked after had no verbal language, very little non-verbal language, nearly always screamed with any human contact (sometimes not with his parents), unable to look after his personal hygiene (to the point where it was dangerous for him)...
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he couldn't leave the house, he had no written language, he tended to head towards the corners of the room he was in where he'd stim. I think he was living in a sensory hell. (But very hard to say for certain...)
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Probably. Did you ever give him shades to wear? Ear defenders? Or if he is prone to throw things, just turning off flouresent lights and being quiet? I did that once for some autistic kids I was told were 'bad'. We sat in the daylit Sunday school room and were nice and calm.
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