6:32pm July 3, 2014

Why ‘atypical’ was so damn important to me as a kid.

My introduction to the world on IRC used to read “Amanda is 18 years old, and diagnosed with atypical autism.”

The atypical part was extreme important to me.

(This gets really long.  It’s why I was so insecure, about everything, and why I think scared insecure new community members are more important than the egos of people who want to act as self-appointed community gatekeepers.  The rest under the Read More.)

I didn’t really know the story of my initial diagnosis. I didn’t know the doctor never said the word atypical when he spoke to my mom. I didn’t know he used the words ‘idiot savant’ repeatedly. I didn’t know that, in medical records I would not see until my twenties, he had written a graph of my functioning level in which I started out low functioning and never exceeded mid-functioning except in a possible far-off future that nobody was sure about. And that the time I was called low-functioning was actually a time when I was quite verbal. I didn’t know that the reason he’d stressed the “PDDNOS with features in her childhood resembling atypical autism” angle in my written diagnostic papers was the reason many doctors in the 1990s did this, as has been written about in the book Unstrange Minds: They wanted to give us the best chance they could, and an Autistic Disorder diagnosis could be practically a death sentence. I did not know that within less than a year of my appearance on these chatrooms, my diagnosis would be changed to Autistic Disorder by the same doctor who diagnosed me with Atypical Autism, in recognition of the fact that the danger was over and I had always fit the criteria for Autistic Disorder and etc. I knew none of this. None of it.

What I did know:

My medical records mentioned PDDNOS and atypical autism and nebulous stuff about “developmental disabilities” and “severe neurodevelopmental disabilities” and the like, dozens of times.

I had gone to a school for kids with mixed psych and developmental disability diagnoses, where I was one of a handful of people on the spectrum who could even speak most of the time. And my primary diagnosis there was schizophrenia, although they acknowledged the PDDNOS and other diagnoses as well.

I’d been acting out whatever disorders I got diagnosed with, partly as a survival tactic, partly out of all kinds of fears and rules that would make no sense if you weren’t inside my head. I was terrified of doing the same with autism. I knew autism was something real about me, but almost did not dare believe it. Nothing they’d said about me other than autism and PTSD had been real. Why should autism of all things be real? Why should the one diagnosis I couldn’t understand, that I couldn’t sink my teeth into, that had nothing concrete about it, be real?

On the chatrooms, I was meeting people like me for the first time, and I was scared, I was terrified. I had bullies that I called friends, and I was certain that the people in the chartrooms were my ‘friends’, pretending to be people with lives like mine, so that they could laugh at me when I fell for it. That was well within the range of things that my friends would do.

I had no ability to see myself as others saw me. If I had, I would have seen that it was not hard to look at me and see autism. But I didn’t have that ability, at that age, because of autism. So I believed that I was passing better than any autistic person had ever passed. I made up elaborate theories for how I was able to pass so well. They were total fluff and fantasy, but I made them up anyway. I had to explain why I was passing so well… while I was passing not at all, according to people who knew me at the time.

So I had this idea that if I was autistic, I was barely autistic. Just barely, the tiniest little sliver of autism. Any time I had any difference from another autistic person, it was proof to me that I was not autistic, or not very autistic. I scrutinized myself under a microscope daily and always found ways that I couldn’t possibly be a real autistic person.

So atypical autism was the most I could bear to say.

Even after my diagnosis was changed just to autism, I had trouble saying I had more than atypical autism.

Atypical, very high functioning autism, the type of autism where you’d never know I was autistic if I didn’t tell you explicitly. That type of autism. The type of autism where if I were to go to a place with lots of autistic people, everyone would know I didn’t belong. Everyone would know I wasn’t a real autistic. Just a very fringe, atypical autistic who maybe didn’t belong there at all.

I went to Autreat. I couldn’t function. I could barely eat. I could barely do anything. I shook so hard that I actually rattled the entire floor of the cabin during one presentation. I had to be “handled” by several other autistic people to prevent me disrupting things by screaming and running off all the time. I lost the ability to speak, I lost the ability to move, I lost the ability to think. I was terrified.

I was so terrified because I was barely autistic, barely autistic at all, and I could not hold up as well as most of these other people. And most of these other people were cut-and-dried autistic or Asperger’s. They were so very clearly autistic. I knew their life stories from mailing lists and email conversations. They had soooo many autistic traits, compared to me. And yet I was becoming completely nonfunctional in this environment, and most of them were managing to hang on. Not that they didn’t have problems too, but I was one of a small handful of people who were having Big Problems.

I felt like a fool.

I felt so horrible.

I felt like I was hijacking their event.

I felt like I was not autistic enough to function there.

I remember a later conversation I had with a mother who went there. She expressed surprise and shock at the fact that another person had stopped speaking. I said “But I stopped speaking there sometimes too, and you weren’t surprised at that.” Someone else said, “But nobody expected you to be that high functioning.” I thought they were kidding. The parent in question very rapidly said something that became a catchphrase for her, whenever she wanted to minimize the speech problems of people other than her child — “But speech problems aren’t really part of autism anyway.”

That put me in my place. The fact that I kept going mute had nothing to do with autism. What did it have to do with, then? Probably something hideous.

You see, all throughout my teens, I knew I had something hideous going on with me. Not the way most teens do. Like, I had a disability, multiple disabilities, and I had no proper diagnosis, or when I did have a diagnosis the diagnosis wasn’t being explained to me. I was losing abilities that most people take for granted. I was not sure I would live outside an institution, ever, and neither was anyone else. And I had this idea in my head that whatever was wrong with me was so unspeakable, so awful, that it did not have a name.

When I was diagnosed with autism, I more or less ignored it at first because the word ‘autism’ meant nothing to me. Same with ‘developmental delays’, ‘severe and complex neurodevelopmental disability’, and things like that. Those words held no meaning. Words that held no meaning were useless. Therefore all the words that could have led me in the right direction went ignored.

Psychosis, on the other hand, I could understand. I knew what psychosis was. I knew I wasn’t psychotic, but it didn’t matter. I knew what it was. So when I got called psychotic, I ran with it. Because it gave me something to cling onto that made sense. That isn’t the only reason. I also was under a lot of duress from a lot of sources. But this is just to show you how my mind worked. To me the worst possible thing was to have a problem so deep and terrible that it would never have a name that I could understand.

I did begin to realize I must be autistic. I read Donna Williams, which resonated greatly, and Temple Grandin, which resonated a little. I met other autistic people, some of whom were totally alien to me and some of whom were the first people I ever saw whose body language was mutually recognizable between us, regardless of whether we had language itself in common. Some part of me deep down knew that autism was it, if there was an it.

And what happened to me at Autreat led directly to me being diagnosed with autistic catatonia the year after I got home. There had been many people there with autistic catatonia, including Jim Sinclair xemself, and they made sure that the proper literature made it into the hands of the psychiatrist who had been treating me since my early teens. And so now there was even a word for the fact that things were always getting harder for me and never easier.

In the autistic community, things were strange.

Things were strange because even the people with the least in common with me, always had something major in common with me.

Things were strange because, at that time in my life, other people in the community were much better at understanding how other people saw them, than I was at understanding how other people saw me. Understanding how other people see you is crucial to understanding whether the diagnostic criteria fit you. Because the diagnostic criteria are all about what others observe in you, not what you observe in yourself.

I lived a strange double existence where I read things about autism by autistic people that resonated down to my very bones, and I read things about autism by nonautistic people that sounded like the most alien thing from who I was, that things could possibly get. I didn’t realize that the autistic people I was reading, in addition to being able to describe their experiences from the inside out, were also able to describe their experiences from the outside in. They were far more able — at that point in their lives, at that point in my life — to say “This is how other people see or saw me.” I couldn’t do that barely at all.

I obsessively went through the diagnostic criteria. The diagnostic criteria are all about how other people see you, not about who you are. And sometimes I could count enough, sometimes I could count just barely enough, sometimes I couldn’t count enough at all. And so, even after my autistic disorder diagnosis, I secretly believed I had atypical autism. Very, very atypical autism.

I also had ways of being in denial. Any time I seemed to meet a criterion, it was “yes, but…”. Any time I seemed not to meet a criterion, I would not look for any reason that I might be mistaken. So it was almost as if I was looking for ways not to be autistic.

Atypical autism. Atypical autism. Atypical autism. Atypical autism. Atypical autism. It became like a mantra.

I formulated all sorts of weird theories. Like I decided that whenever I stimmed, it was in ways nobody could see. Looking back I have to laugh. My mother first reported my rocking my head, when I was still an infant. I have photos of hand-flapping dating to infancy and toddlerhood. I did a strange flapping-thing with my feet that got me in trouble at school because it made too much noise, and teachers always said I must do it “to draw attention to yourself”. I didn’t know what “to draw attention to yourself” meant (literally didn’t understand the words), but I felt the contempt in their voices. I ran into the bathrooms and pulled out all the paper towels and all the soap and smeared them all over the place. I put necklaces in my mouth and spat them out, over and over again, until the gold plating on one ball necklace completely lost its color with the steel (or whatever it was) showing through plainly underneath. I chewed everything, stuck things in my mouth that didn’t belong there, embarrassed my mother by doing so on live video once. I waved objects in front of my eyes, I waved my fingers in front of my eyes. I chewed on my skin until there were holes and red marks. I banged my head until people would actually stick their hands between my head and whatever I was banging it on, trying to get me to stop. I spun around in circles a lot of places instead of dancing. I could go on, I could go on and on and on.

These are not little hidden things.

But I didn’t put all that together. I couldn’t put all that together. That would require seeing myself from the point of view of the sort of person who looks for autism in other people. I could not see myself from the outside at all, let alone from that point of view. I could not gather all that information together and present it as evidence that yes, I stimmed, rather a lot for a kid who was in gifted classes. To me, each part of that was a separate piece, unrelated to the rest, nothing to do with autism, surely.

So instead I concocted this idea that all of my stims were tiny little things that could be hidden easily, barely ever spilling out to where people could see them. I asked people, “Why is it that two people who are alike should have such totally different diagnoses just because one of them stims in obvious ways and the other one stims in ways that are less obvious?”

And that is only one example. I got downright convoluted in my attempts to explain how well I passed, when… I’ve never passed all that well. Not really. Most of the time that I’ve passed at all, has been because at the time of passing, nobody knew what autism was, so they ascribed everything to other explanations. Then they remembered those explanations, rather than remembering my actual behavior that led to those explanations. So I became “a druggie” (who wasn’t doing drugs at the time), “attention seeking” (when I wanted everyone to go away and leave me alone), and so forth.

I wrote a post about the difference between passing and being passed off:

http://ballastexistenz.wordpress.com/2010/04/11/on-growing-up-with-strange-sensory-reactions-and-the-difference-between-passing-and-being-passed-off/

If you don’t want to read the whole thing, here’s an example:

Someone sees me waving my fingers in front of my face in a complicated pattern, which is something I used to do a lot in ninth grade.

Someone says, “Sie is tripping on acid.”

15 years later, what does the person remember?

Do they remember “Sie was waving hir fingers in front of hir face. She did an awful lot of that. I wonder why. You know, autistic kids do a lot of that. And sie does say sie’s autistic now. Maybe that’s it?”

Or do they remember, “Sie spent a lot of time on LSD. I don’t even remember what made me think this. It doesn’t matter. Sie had to be on drugs. People who aren’t on drugs don’t act like sie did.”

Chances are, they remember the second bit. Mind you, in ninth grade, I had never done LSD. But it doesn’t matter. Explanations are stronger than sensory memories in most people’s minds, I’ve noticed. So they don’t remember what I looked like, they only remember what they thought about what I looked like.

And that’s how people who honestly don’t pass very well, get passed off as other things. Not as normal, necessarily. But as crazy, as attention seeking, as on drugs, as blind or having “a hearing problem”, as intellectually disabled. The same person can get passed off as ten different things by ten different people watching them do the same exact thing!

But I didn’t understand this back then. So I believed that I passed because I was really good, somehow, at making myself look normal. I believed maybe I had used ‘characters’ as I believed Donna Williams had — I’d certainly had ‘characters’ for awhile, for reasons totally unrelated to autism, and I’d given them names. I resurrected my characters as ways to explain my nonexistent passing. What a tangled web we weave, even when it’s only ourselves we’re deceiving.

But I became obsessed, for quite some time, with how I could be both autistic, and not autistic.

I was autistic because every time I read something by an autistic person, even if their subtype was the exact opposite of mine, there was a sense of kinship I had never read in the writing of anyone on earth.

I was not autistic because I read Uta Frith, Francesca Happe, Tony Attwood, Simon Baron-Cohen, Lynn Koegel, Bryna Siegel, and a host of other idiots who style themselves autism experts. And nothing they said resonated with me at all.

I also was not autistic because I had been 14 when I was diagnosed, and real autistic people are diagnosed in infancy. And I also was not autistic because I was in my teens before I ended up in either institutions or special ed. And I also was not autistic because I’d never been in a state institution. And I also was not autistic because I did not match, exactly, every autistic trait given out by every autistic person I’d ever read. Which would have been impossible, but my mind wasn’t being very logical, it was just looking for reasons I wasn’t autistic, to torture me with.

And it was torture because this was the first time I knew people like me.

And the people like me didn’t even have to be that much like me, to be like me.

Like by now I’ve interacted with, or read things by, hundreds of different autistic people.

And even the ones most different from me are likely to have strong commonalities with me, that I lack with just about everyone else I come across.

And that’s how I gauge what’s real and what isn’t, these days.

There’s some kernel of truth in the idea of autism (in general, not just as applied to me) because I have something important in common with other autistic people, no matter how different we are, that I don’t have in common with nonautistic people.

And gradually, that’s how I began to see it.

And gradually, I began to see myself as others saw me, and that was mind-blowing. Utterly mind-blowing. I had no idea how autistic I looked.

What happened was I’d gone to a conference and I’d hung around and did stuff and finally made a comment late in the day, and everyone was shocked, and acted like a potted plant had just spoken.

So I asked my parents for a camcorder and set it up for a few hours in my living room while I went about my daily life.

Stunned doesn’t begin to describe it.

I looked autistic. I looked intellectually disabled. I looked like someone who doesn’t understand a lot of what goes on around them. This was the start of my being able to see myself how others saw me.

I ordered my medical records and found things I hadn’t expected to find, including a description of myself as low-functioning dated at the ages of 14 and 15, when I thought I was quite “high functioning”, having just been in college and all. And my highest GAF scores I was ever given was a 60 (mid-functioning). Not that I believe in functioning labels now, and I had already begun questioning them at the time, but at the time it was a serious, serious shock. To really see how others were describing me. I found audio tapes where people were discussing whether I could be “salvaged” or whether I should be sent to a state institution for the rest of my natural life.

I had to reevaluate everything. And I did.

And I began to be able to see myself as others saw me. And I began to be able to describe myself — at least sometimes — the way I would have looked from outside. And I became much more confident that I was autistic. Because I now saw that being autistic, for me, was two things:

First, and most importantly, I identified with the writings of other autistic people. I identified so much that there was not an autistic person I was totally unlike, even if there were some I was mostly unlike. And there were lots that I was so alike I’d never seen the like of it in my life. Lots, and lots, and lots. Where before in my life, I had never met anyone like me. This, more than anything, meant I was autistic.

Second, and least importantly, I could now properly put myself in the shoes of other people watching me. I could see that as stupid as the experts were, I did in fact fit into their descriptions of my behavior. Even if they were over-interpreting the behavior, or under-interpreting it. For instance, I didn’t have nonfunctional routines and rituals, so I thought I couldn’t be autistic on those grounds. I had to learn that nonautistic autism experts see our routines and rituals as nonfunctional, when actually autistic people tend to either see our routines and rituals as functional, or else have some sort of Tourette or OCD component that comes out. And I could see how my routines and rituals could be described in that manner, by someone viewing me from the outside, with the eye of an autism clinician. Until I was able to put myself in the shoes of an autism expert, I was not able to see myself as an autism expert would see me, and therefore could not identify with writing by autism experts about autism. But once I understood how they saw our behavior, I could see that my behavior fell rather neatly into their categories.

Still, I wondered. It was only a couple years ago that I picked up a book by Lorna Wing called “The Autistic Spectrum”. I still expected to find myself, if not actually having ‘atypical autism’, to be somewhat on the atypical side. I was shocked to find that, when looking at myself through nonautistic eyes, I was a rather typical autistic person by Wing’s description. The only major atypical areas were things related to being socially passive (the rarest of her social categories, but predisposes people to autistic catatonia and some other stuff), and the fact that my brain freely mixed traits considered mild and traits considered severe. But overall, I was not that atypical at all, even for what I’d come to expect all this time later.

I think I was expecting more atypicality because I was quite atypical on WrongPlanet. Which was the part of the autistic community I was hanging out in when I read the book. But reading the book I found myself almost depressingly humdrum as autistic people go, with those two exceptions. I eventually had to remind myself that web boards don’t self-select for precisely-typical anything, including autistic people.

But to go back to who I was when I first encountered the autistic community…

I would never have said I had Asperger’s. Because my doctor had actually instructed me never to let anyone tell me I had Asperger’s. He said that my language skills did not fit the pattern of Asperger’s and that just because I could talk (at the time) didn’t mean I had Asperger’s. He was quite adamant about this. So I could not take the “I’m not autistic, I’m just Asperger’s” route. Much as I’d have liked to. Secretly, the word ‘aspie’ sounded so much more inviting than ‘autie’.

So I had to settle for atypical. I used the word atypical so much it probably bored everyone stiff. I never lost a chance to let anyone know that my autism was atypical, that my diagnosis was originally atypical autism, etc.

And when my diagnosis was changed to autistic disorder… I sort of accepted it, and sort of didn’t. I had the papers in my hand that said that my doctor, the same one who diagnosed atypical autism, now said I had autistic disorder. Which of course meant that I’d had it all along and hadn’t been entirely told everything about what was going on.

It made me very insecure to have a diagnosis of autistic disorder, with no atypical, no high functioning, no nothing, just autistic disorder.

It couldn’t be real, it couldn’t be true. Someone must have been lying to me. All these people online that I thought I identified with, they were sent by the bullies. It was all to make me feel like I belonged somewhere, before unleashing the devastating blow that I would never belong, anywhere.

If that sounds paranoid, you don’t know the bullies in question. They enjoy destroying people’s lives for fun and occasional profit. And they are intellectually swift enough that they devise lots, and lots, and lots, of ways to do it.

But fortunately, they were not behind the friends I made in the autistic community. And the more friends I made, the more I realized my bullies weren’t friends. I left them for good, I disappeared out of their lives. They didn’t like this. They still don’t like this. Tough shit, I am not weak enough to be one of their living toys anymore.

But that fear…

That fear of being where I don’t belong.

That is a fear that I would do almost anything to keep someone else from feeling.

That is why I am against all the identity policing in all these different communities. Because all it does is make the most vulnerable people more afraid, while not actually doing anyone a single bit of good. I don’t consider inflating people’s egos doing good, anyway, and I don’t buy that making vulnerable people freak out is worth any benefit to these communities.

I will always. Always. Always. Remember being the meekest of meek little autistic people, who would always say sie was atypically autistic because sie was so damn afraid that someone would throw hir out if sie claimed to be even the tiniest bit more autistic than “barely at all”. And I never want to have that effect on another person. I know nobody can foresee the consequences of everything they do, and I could accidentally make someone insecure just by existing (in fact I’ve seen that happen and there’s not a damn thing that can be done at that point). But I’d like to try to be welcoming, in any community to all the really meek terrified people who wonder if they belong there. I have a lot more empathy for them than for the people who are all concerned about whether their community is purely for the right kind of people or not. And that goes no matter what kind of community it’s for.

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