6:32pm July 15, 2013

➸ An Anthropologist From Alternia: I just skimmed through an issue of an autism journal dedicated to "first person" accounts of autism.

I may have counted wrong so this is approximate.

Thirteen of the writers were non autistic people. Parents, step parents, sisters, brothers, and even cousins.

Nine were autistic.

FIRST PERSON my ass.

(I bet this is why some parents feel entitled to post in that…

These aren’t doing that, but calling them first person perspectives is still pretty galling.

I was once part of a political organization for disabled people. It was for some reason divided up into “delegations” by diagnosis. There were dozens of conditions, including some much more likely to render someone incapable of participating, than autism is.

Tons of people joined each one. Each one had a notice on it saying, before anything else, “this is for people with autism ONLY”, “this is for people with spinal cord injury ONLY” etc.

Only one delegation had any problems at all involving people without the condition joining.

Guess who?

Yep, autistic people.

We were flooded with parents who immediately started talking over us and forming goals completely different than ours.

We directed them to the family and caregivers delegation. There was one. (A generic one for all disabilities.) They got offended and said they belonged in the delegation for autistic people because autistic children can’t communicate.

Finally we asked for the help of the rest of the organization. None of whom would have put up with this in their own delegations.

There was, after all, a parent and caregiver delegation just waiting for them.

But that wasn’t good enough. All the other disabled people said the autistic people were being unreasonable.

Then they suggested a “compromise”. Again remember there was a generic caregiver delegation specifically to keep them out if everyone else’s.

They said why don’t we make another caregiver delegation just for parents of autistic children.

At which point one autistic woman had had enough and said. “What is this? ‘Nothing about us without us, but nothing about you without a note from your mommy?’”

I don’t remember how it turned out. But it definitely showed us that not only parents of autistic kids, but other disabled people, think there’s something special about autism where “people with autism ONLY” means parents too.

By those standards, I have prostate cancer because my dad had it.

Also I’ve always hated, in general, when people write in the first person as if they are someone else who lacks the ability to write, whether it is a a child or a pet. It seems really invasive in a way that’s hard to describe.

Maybe I’m sensitive to it because people were always saying what they thought I was thinking, to the point I think it screwed up my communication skills.

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