Daily Archives: March 2, 2010

My sort of people, just as real as theirs.


I have wanted to write this post for a long time. Like many posts I have written, I have written bits of it but never the whole thing together. The catalyst that is finally making it possible to write it is a sad one rather than a happy one, though. Even though the topic itself is happy. I’ve once again found my entire life pretty much rejected by someone whose life has followed a pattern closer to the dominant stereotypes of what an autistic person’s life looks like. Why? Because I am different than them and a few people they know, and don’t really make sense to them, so it just follows that my existence isn’t valid or real.

The systems of privilege among autistic people are complicated. You can’t really just say one person has more on some absolute scale of privilege. But there is a form of privilege accorded to those autistic people whose lives follow any of a number of patterns. Those include people who most seem to resemble the most dominant stereotypes of autism, and also those whose experiences are the most commonly discussed when autistic people get together and discuss such things (even though which experiences get discussed is also related to which fit the stereotypes… and on and on in more levels of complexity).

I became aware of all this when I first encountered the autistic community online. I was just barely an adult, just barely learning to connect thought to words in any lasting way, and feeling as if I was just falling and falling when it came to the skills most valued by society. Speech was there, but for huge parts of the day (more and more of the day) it wasn’t. I fell out of a tree for the first time in my life that year, and my motor skills were becoming interesting in all the wrong ways.

And as I entered chatrooms and mailing lists, there were things I had clearly in common with people but what stood out to me were the differences. Why did everyone else seem to describe puberty as a period of sudden advancement when for me it was when everything I thought I had painstakingly gained fell apart? Why did people describe some things in a way that didn’t make much sense to me? There was more belonging here than anywhere, but at the same time I kept wondering if there had been some massive mistake when I was diagnosed. I only really knew a handful of people, and virtually nothing about autism, or about systems of privilege, or the way our experiences were measured against professional standards. I was only 18 years old, and very… I don’t know the word. Meek, passive, terrified of going against the rules while aware I was made in such a way that meant I would never in my life be able to follow them. Mixed up. And so on.

But as I met more and more autistic people, something began to happen when I least expected it. People began to pop up. Here and there. And we made instant and total and amazing levels of sense to each other. In everything from described experience to body language to… all kinds of things I never in my wildest fantasies of “finding my people” had ever expected. People who, as I sometimes put it, didn’t need to come in my front door because they were already inside. I don’t mean we were identical, far from it. But we were made of the same stuff, and enjoyed an ease of communication I had never believed possible.

These people helped me figure out more about my own abilities, difficulties, and general place in the universe than I had been able to figure out on my own. Like I described in a recent post, we were separate, no untoward boundaries were crossed, but we resonated. Powerfully.

It was also clear from the way things were playing out that whatever we had in common was not just wishful thinking. We varied as to which of us first described some particular aspect of our lives. Often many people individually and separately came up with similar descriptions. You can never be 100% sure two experiences are the same, but we were as close to sure as we could get of what we had in common.

And these people were all also, like me, put into the category of autistic. We were far from the largest or most dominant grouping of people, but someone had seen fit to put us all in that category despite all that. (Doubtless one day other groupings of human beings will happen. They always do. But in today’s groupings, this is where we all ended up in the end.)

But as for which of the professional categories we were put into? All of them. Sometimes one single person had been put into several. LFA. HFA. Asperger. Autism. PDD-NOS. No rhyme or reason to it. But we’d all been called autistic.

I also don’t want to make it sound as if this was some kind of absolute thing. It wasn’t. It also wasn’t planned or expected. And it wasn’t that we all had identical characteristics, just that within the forest of autism we were all different varieties of oak trees, or else trees closely related to oaks.

The thing we had the most in common is the hardest thing to describe. A perceptual state, a way of relating to the world around us, which there were no words for but which was recognizable to each other. In an inadequate shorthand, these are some things we recognized in each other. Please note that while some things are more stereotypical than others, we have no choice how close or far from the stereotypes we are. These things just exist, and these descriptions are the product of lots of conversations among ourselves about these matters, not the product of any single one of us:

1. Mutually comprehensible body language. To an almost frightening degree, to people who were used to being shielded in a way by the fact that most people couldn’t read us.

2. Trouble understanding language. By which I don’t mean mishearing words, but rather existing most of the time in a state where language did not make sense. And this totally irrespective of how fluent we appeared in speech or writing — many of us had learned to fit words together as patterns of sound before understanding a single word of it. Meaning did seep in over time but in an unusual way and very prone to vanishing again. Never at home in language regardless of whether we are excellent writers/speakers, or people who can’t write or speak a single word. Always requiring effort. And always starting from a “level” much “below” that of language even being something we have thought of.

3. A way of learning certain common skills where we might be able to perform a skill, even at a seemingly high level, then having it disappear as if it had never been there and having to relearn it from scratch. Sometimes this would happen once, sometimes many times. We could try to learn these things, manage to perform like building a house of cards, and then a gust of wind would blow it down. And starting again from scratch. The best description I have ever heard of such things came from Jim Sinclair’s article called “Bridging the Gaps”:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six.  The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them.  It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

4. Having a different way of learning where things fit themselves together slowly over time, and are more likely to stay put. The main problem being that this isn’t something we can do on demand. It just happens. It is slower, more unpredictable, “behind one’s own back” and cannot be relied upon to produce any given wanted result. And the skills learned may not even be skills that have a name or a concept for them in most people’s eyes, so may be considered nonexistent or worthless.

5. Having a highly unconventional way of perceiving the world. Usually of a specific kind that is still hard to describe except for describing what it is not. Perceiving color, shape, texture, tone, etc. without easily or automatically perceiving something like “table”. This being another variation on the same thing that makes receptive language so difficult. Anne Corwin describes this:

I would probably walk into the room and see “check patterns” before even being able to identify the door as a door and the tablecloth as a tablecloth! I tend to be incredibly clumsy and easily overwhelmed in new/unfamiliar settings because it takes me a long time to figure out where (and what) all the “macro-objects” are. When I go to a new place for the first time I sort of need to scout and scan all around it like a cat before I can really navigate effectively. The process of “resolving patterns and shapes and forms into familiar objects” is actually a semi-conscious one for me.

I was talking to some other people about this phenomenon once, and one thing that came up was that some of us in that conversation (including me) often tend to sit on floors and other surfaces even if furniture is available, because it’s a lot easier to identify “flat surface a person can sit on” than it is to sort the environment into chunks like “couch”, “chair”, “floor”, and “coffee table”.

6. Having stayed in that mode of perception long enough to have developed ways of understanding and navigating the world that can be done without having to leave that mode of perception. This is sort of where all those patterns slowly coming together and growing more complex with time comes in, in the mode of learning I described earlier. So perceiving the world sort of as if we are moving through this sea of colors and textures and sounds and smells, but having learned to understand and navigate that sea without having to pop into “gee is that what they call a table?” mode. And having “table mode” be one of those exhausting things we may be able to do or even do well but that just plain doesn’t fit with us and easily drops away again.

(Sometimes I describe the last two things and people go “Oh it was like that when I was three.”. But for us it is still like that. Except having grown up and learned the whole way, it’s not as confusing as it was when any of us were three.)

7. Instead of having abilities that are locked into one mostly unchanging pattern, having abilities that are engaged in a constant shifting set of tradeoffs, whether you want them to or not. So always being in flux, never being certain what abilities will (and won’t) be there next, and thus seeming really inconsistent on a lot of levels.
Here is how I once described this:

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

There is more. There is much more. There is always more. But the English language was not developed by or for people like us, leaving me always feeling impotent and repetitive as a writer when I try to talk about this stuff. I tried harder than I have ever tried in my life when I wrote my article in the current Disability Studies Quarterly, but still, there’s that language barrier. So if I didn’t get something quite right, chalk it up to that, I can’t sit around trying to perfect my descriptions all day and have already described many of these things in depth individually.

Call that a subtype of autism, call it a bunch of people who happen to find that we have things in common and who are also considered autistic, whatever, that’s just words. But these are things that are important to the people experiencing them, not just to the professionals observing us. We are not better or worse than more stereotypical autistic people, just different.

Anyway, I have found that… there are people who read descriptions like this and go “WTF how’d you get into my head?”

To such people, at least a big part of those descriptions is going to be really familiar. They might or might not suddenly be able to add onto such descriptions themselves. But they generally find this incredibly familiar and intuitive, the same way I find similar descriptions from others. And they will easily see how the pieces fit together.

Others go “Bits of that sound familiar.” it may or may not make sense as a whole but they have at least some things in common.

Others go “WTF that’s totally alien or even opposite to my experience.”

That third group? That’s where the privilege comes in. Most people from that group are people who say their experience of autism is similar to professional accounts, or similar to the group norms that have developed in parts of the autistic community. And that means that if they choose to react to this unfamiliarity with some combination of dismissal, scorn, disbelief, etc… then a lot more people will listen to them than to us.

In the autistic community there is a stereotype that says that autistic people all think in a way involving much more of the “that is a table” stuff than I use. That autistic people’s abilities are very stable in the long term. That there is only one direction of “progress” and that is the direction even most nonautistic people say is forward. And Temple Grandin may be responsible for a lot of this, especially the idea that autism “grows less with time”.

Is that a valid version of autism? Sure. Is it the only one? No way. I have talked to a lot of people who just have trouble grasping how people like me work.

The other option, besides grumbling about us not being autistic enough, is to either say “That’s different than my experience, but, meh, whatever, we are all different,” or to even say “Wow, that’s different than my experience but it’s sure interesting, tell me more if you want to.” Either of those responses is sufficient.

Having to listen to autistic experiences different from our own is something those of us with experiences in the minority do all the time. We have to. We are outnumbered. It would be nice if instead of going “how can you possibly call yourself autistic,” people with the majority experiences would just learn to accept that theirs are not the only autistic experiences on the planet.

I have actually gone into more depth than most people I know of to learn the different experiences autistic people can have. I listen. A lot. And it’s endlessly interesting to hear how those of us who share a label both resemble and differ from each other. This is one reason the people at MIT find me useful, because I have delved heavily into the many lived experiences of autism and can tell them if I have heard of anyone having a particular experience (either directly through autistics or indirectly through parents or professionals). They also say I am unusual in that I don’t just repeat what the professionals say about us, I instead am very aware of the multitude of different things we say about ourselves, and the influences of the thought of different professionals on the stuff we say.

It’s a fascinating topic if you’re interested in it. But you don’t have to be into learning that stuff, in order to give people with the less common (and/or less commonly discussed in the autistic community) variants of autism the basic respect of believing what we have to say about ourselves. Because that voice in your head that says “If it differs from me or people I know then it must not be real?” That’s ableism. And to the many people who have written to me in private to say they have these experiences but fear telling about them in case they get rejected or called liars? That rejection from even other autistics of all people, the people they expected compassion from, that can be devastating.