as small as a world and as large as alone

11:10am July 3, 2014

madeofpatterns:

chavisory:

andromedalogic:

The girl I might be starting a chapter with exclusively uses “Asperger’s” and “high-functioning” labels to refer to herself.

I need to remember that this is also a thing I did, when I was first diagnosed. I called Asperger’s “a high-functioning form of autism”. I said I was high-functioning…

I think there is also a dynamic where people…especially if their actual diagnosis was Asperger’s or HFA…will use those terms as a way of making sure that they’re not claiming to have more significant deficits than they (think they) do.

Which is a thing that I definitely did, until a few things happened:

1. I met a lot more autistic people, including people actually diagnosed with “autism” in childhood and not Asperger’s Syndrome in adulthood, and the extent of our similarities became more obvious to me.

2. I started realizing just how much I actually could not do as a child…like in ways that should actually have made me ineligible for the Asperger’s diagnosis, that are strikingly similar to kids who got diagnosed with autism more recently.

3.  I heard more autistic people with more intensive/obvious disabilities say “No, we want to hear you identify as autistic; it doesn’t help us when you refuse to use the word.” 

I think it can be a way of having internalized “Not like my child” or “Not really disabled” messages in a way that makes you very wary of, like, claiming more credibility on the subject than you think you have a right to.

I just call myself autistic, and I understand that “high functioning” is a moral judgement and not a clinical judgement. (And I’ve never called myself aspie because I’m not very similar cognitively or culturally to people who identify that way, and anyway my diagnosis is in fact not AS).

But…

I do have certain reservations about that. Because I think it matters that I can usually communicate without assistance and that I don’t depend on services for survival and that I’ve never been locked up for being disabled.

And I think there really are differences that sometimes get glossed over. Like the way Autreat called itself autistic friendly space but was targeted at a particular cognitive subtype. 

And I also think that… being perceived as high functioning or low functioning are both horrible, but they’re also different social experiences. And I want to acknowledge that?

The problem with Autreat is that every time I’ve tried to warn people that it’s biased towards a particular cognitive subtype (and boy is it ever, and boy do they only ever accept me conditionally, partly because of name recognition, which is a big thing in the autistic community)… I’ve gotten told off by Autreat people for “bashing Autreat” or “trying to keep people from coming”.  Then I’ve been told “we’ve always had nonverbal people here” (always a few, on the sidelines, being treated as Very Different), “we’ve always had low functioning people here” (ditto), “what more do you want?”

I want to never ever again be lying there shutting down and unable to communicate during a discussion where I’ve been trying to argue that a well-liked Autreat woman shouldn’t be referring to her students as low functioning.  While she tries to say “I don’t mean YOU…” and I get completely furious because if I were one of her students she would mean me.  And running out of the room because I don’t want to become Exhibit A of “this is what a low functioning person looks like” once my language shuts off – and everyone reads that as my “angrily storming out”.

And I could go on.

Autreat is not a place for me.  It’s a place I’ve done my best to make better for people like me.  But it’s not a place for people like me.  No matter what it pretends or wants to be.

I like it the least when I get to be honorary high-functioning there.  It makes my blood boil.

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