6:04am February 1, 2015

"You’re not profoundly autistic, you just look it because you have health problems."

Long – there’s a TL;DR summary at the end.

I’ve been reading The Jumbled Jigsaw by Donna Williams, in which she says a lot of things I’ve been thinking of, of late. I’ve been wanting to put together a fairly simple representation of how different aspects of autism can manifest in different people, and she seems to be doing the same thing, although from a different perspective. (She believes in way more quackery than I would ever put down in a book sure to be read by desperate parents, for instance.)

But we share one fundmental assumption: Autism is not a thing. Not only thata, it’s not one thing. It’s a group of people, who have certain things in common, and certain things quite different.

For one person, autism can be based entirely on personality traits and nothing, at all, else. They are extremely introverted, they don’t know or care what others think about them, they keep their feelings to themselves, they are highly logical and may look down on people they see as guided too much by emotion, and so on and so forth, and if you add up enough personality traits, extremely enoug, you get someone who qualifies for some kind of autism spectrum diagnosis. (Aseprger’s, Autistic Disorder,PDDNOS, Autism Spectrum Disorder, Atypical Autism, etc.)

And then you can have another autistic person whose autistic traits have nothing to do with their personality, or even with their overall cognitive style, but rather with scrambled sensory processing and scrambled motor skills.
Mostly you get people who are mixes of all these things and more, but it’s rare that you get a “pure” autistic person, as if such a thingeven exists, as if we even know what autism is. Even Uta Frith mentions this in Autism: Explaining the Enigma, a book that is otherwise mostly useful as either a snapshot in time of how people used to (and still, unfortunately do, in many places) view autism, or as toilet paper. (Except I think it’d be a bit rogh and scratchy on sensitive areas.)

Anyway, I remembered a semi-benign stalker I used to have. It took me awhile to identify hir as a stalker, because I was used to being stalked by people who wanted to hurt me. Sie was a different type of stalker, but one that is extremely common: Sie believed sie had more of a relationship with me than sie really had, because sie had seen me on television and had been reading my online writing since high school.

This type of stalker generally means hir target no harm, but sie may become jealous and then do harm to someone, whether hir target or someone sie sees as getting more attention from the target than sie gets. This particular stalker was also a piece of work in other ways and wore out hir welcome wherever sie went. To this day, all I have to do is mention hir name in the building we used to live in, and people roll their eyes, cross themselves, gripe about how they’d never seen a more self-entered person in their lives, and generally remember hir all too well.

So basically I had an obsessive fan. I didn’t know people who got on the news for short clips could get obsessive fans, but I’ve now talked to others who have had the same thing happen to them. The reporters certainly don’t warn you, despite the fact they must have many stalkers themselves.

Anyway, sie moved about 1300 miles in order to live in the same building as me. And I rapidly found out that sie had an obsession with autistic people that sie referred to as ‘low functioning’ or 'severe-profound’. Sie described me many times as profoundly autistic, over my objections that I didn’t like functioning labels of any kind.

But soon, because sie also had to be one of those people who’s the most disabled of anyone in the room? Sie started to downplay my deficits and play up hir own. This became really annoying, because sie had been taking care of hirself with virtually no help for a year without much going badly wrong (other than emotional and social problems, which sie had in abundance), whereas I couldn’t go a week on my own even at my best adult functioning, without some catastrophe or another happening.

Anyway, at one point she said, with a lot of annoyance, “I moved out here thinking you were a profoundly autistic person who had found a way to survive in the system, so I thought I’d be able to do so as well since I’m severe-profound too. But then I’ve just been realizing that you’re not profoundly autistic at all. You’re just a mildly autistic person with so many health problems that it makes it impossible for you to function normally.”

Which really ticked me off, because it’s untrue. I had a lot of problems “functioning normally” long before I started having the string of health crises that have turned me into a cyborg. Plus, if hir list of other conditions besides autism were to be believed, sie really wasn’t one to talk. If I was “profoundly autistic” because of my health problems, then so could sie be.

And now that I’m under treatment for my health problems, treatment that works, it’s becoming more and more obvious how wrong sie was. Yes, I’ve experienced slight gains in ability in areas related to autism, but I haven’t got back the ability to speak, I still need huge amounts of unfailing routines and prompting to get through most of my day, if the idea is that inability cofunction in most of nonautistic world makes me ‘profoundly autistic’, then I’m ‘profoundly autistic’, although I would still reject the label on principle.

I don’t mind calling myself severely disabled, though. Because I am. I’m severely disabled in all models of disability I’ve run across (social, medical, radical, individual). And I don’t have to divide my body up into pieces (“so which part is the autism and which part is the autistic catatonia and which part is the neuropathy and… ARRRGH”). So I can say I’m severely disabled, some would say moderate-to-severe, whatever, most people agree I’m severely disabled regardless of which of my 30+ diagnoses it’s coming from. (30+ sounds like a lot. It’s not, when you realize that at least 10 of them are a different way of describing another 10, that one overarching diagnosis can cause 12 symptoms that all get their own diagnoses, etc)

Anyway, Donna made a really important point somewhere that turns everything my stalker says on its head.

She said that as a general pattern (as in, don’t generalize from this to everyone), most people labeled as high functioning are far physically healthier than most people labeled as mid to low functioning. Because those health problems interfere with cognition, information processing, sensory processing, motor planning, anxiety levels, and all kinds of other things that are more ‘core’ parts of autism than the health problems themselves.

She describes autism as being like a ‘fruit salad’, where each person has different kinds of fruit, and different amounts of each fruit. And that for a lot of autistic people who are labeled severe, profound, or low-functioning (I reject these labels but I’ve gotten them anyway, both formally and informally), part of our fruit salad is severe health problems.

I hadn’t thought of it that way but it makes sense, and it goes along with my observations over the years of a wide variety of autistic people.

So my stalker was effectively saying, “You’re not profoundly autistic. You just have the same kind of severe health problems that get people labeled profoundly autistic.“

….yeah.

TL;DR: While I don’t believe in functioning labels, certainly not when applied to myself, I get irritated when other people try to define me by them. I knew someone who categorized me at first as ‘profoundly autistic’, and then later as ‘mildly autistic with lots of health problems that make you look more profoundly autistic than you are.” Then I read some stuff by Donna Williams that, while I don’t totally agree with all her conclusions, made a lot of sense: This person was saying the equivalent of “You’re not a banana,you’re just a long yellow curved fruit with brown blotches, that you peel and then eat the insides, and monkeys like them.”