as small as a world and as large as alone, madeofpatterns: chavisory: madeofpatterns: ...

3:56pm July 3, 2014

chavisory:

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?

Yes, and I think this is closely related…

People who have different ability sets, different presentations, etc., have different social experiences. There are also differences in magnitude of traits and deficits, which can lead to differing magnitude of various experiences.

People know that, and don’t want to steamroll over those realities, and it may be that “Asperger’s” or “high-functioning” autism are the only language they know as shorthand for conveying what they know they don’t know…

Also even people who *don’t* have different ability sets. Sometimes it’s entirely a matter of perception.

Yeah to me the problem is this:

Four autistic people. At the core of what makes them autistic, they are as identical as it is possible to be. Their diagnoses?

1. HFA

2. LFA

3. AS.

4. PDDNOS

Four autistic people. At the core of what makes them autistic, they are as impossibly different as it is possible to be. Their diagnoses?

1. HFA

2. AS

3. AS

4. AS

That’s why I don’t trust the current set of labels for autistic people. Not functioning labels, not diagnostic labels, not any of them.

To me, what we have is a multidimensional sea of autistic people.

Each autistic person is closer to another in one dimension or another, if they have something in common. The less they have in common, the further away they are in that dimension.

Each person’s “autism subtype” is simply, everyone within a certain, fuzzy-bordered, radius of themselves, in any direction or dimension possible. In that circle, or sphere, or hypersphere, or however many dimensions it’s necessary to go, everyone inside it is in that person’s subtype.

That’s all we can do for now.

So call it all autism, and subtypes are about what we have in common deep down, not what superficial abilities we show.

Speech is unfortunately one of the most superficial of superficial abilities to judge autistic people by, so it’s no wonder they chose it to call Asperger’s.

Even though Asperger’s patients sometimes had a speech delay. Even though all but a couple of Kanner’s patients could speak. Even though if you put Kanner’s and Asperger’s patients in a box and shuffled them, you would not know who belonged to which researcher.

“Kanner’s autism” used to mean “high functioning” sometimes, by the way.

All these things you pick up when you actually read the historical documents.

But anyway… to me what is important is:

1. How does the person's perceptual world behave?

2. What is the person's cognition in general like, in a wide range of areas?

3. How does the person's motor skills and motor planning look?

The interplay of those three things will generally tell you everything you need to know about an autistic person’s “type”, and more. Of course each one of those three things has tons of nuance and particularities, so it’s not simple at all.

I’d try to describe my subtype right now but I’m just too tired and overheated.

But: Perception. Cognition. Movement. And the way they tangle together. That’s the core of autism. Everything else is periphery. All of the diagnostic criteria get it wrong. Because they look at the periphery and ignore the core traits. At best, the core traits will be thrown in, in the most rudimentary possible of forms, as a single, badly-drawn criterion. (“Sensory hypo and hyper sensitivities” is not the majority of perceptual differences in autistic people, seriously, but that’s how people have written it, pretty much.) But they never get it right.

And since they’re using surface-based peripheral criteria to tell which of us is which, it’s no wonder that they’re always putting identical people into separate diagnoses and putting very different people into the same diagnoses… and then treating us differently according to their own crappy judgements of us.

I sometimes wish I could make up a list of actual, interesting autistic traits that I’ve seen. But unfortunately this clashes two things: My ability to observe things using a pre-linguistic pre-conceptual way of looking at the world… …and my ability to describe things using language and concepts. I can’t make those two things meet so easily. But I know I have a lot of observations in my head that could be really important to get onto paper, because I won’t always be around, and not everyone is looking at these things.

Also when I first came to the autistic community, I was very careful to always say I had atypical autism, because I was terrified I was stepping on the toes of people with ‘real’ autism. I didn’t know the full history of my diagnosis (in which I was described out loud as “just autistic” and “an idiot savant” but “atypical autism/PDDNOS” was written on paper so as to not write me off as hopeless… later my dx was changed to autistic disorder… I also didn’t have the papers that referred to me as low functioning at that point too, which came as a massive massive shock given that I could still often speak at the time that they were saying that sort of thing of me), and I didn’t know my diagnosis would be changed to just autism. But I really remember panicking every time I said I was “autistic” because I was afraid I was encroaching on something that wasn’t mine. Because I was only an “atypical” autistic, according to my diagnostic records. Autistic people told me “You’re probably not atypical at all, they probably just didn’t know what they were looking at,” and that turned out to be much more accurate than I could have possibly imagined. But I had so little self-confidence, that the merest hint that I didn’t belong in the autistic community would have sent me fleeing to the hills. I think that’s behind why some people say they’re Asperger’s or high functioning, it’s not just to stress that they’re “better” in some way, it’s to try to say they have privilege or that they’re afraid they’re encroaching on someone else’s territory. And very timid autistics who wonder if they even belong are the most likely to distance themselves from just “autism” by saying “high functioning” or “atypical” or “AS” or “PDDNOS”.