When I first got involved with the autistic community, I heard of all these wonderful stories of autistic people visiting each other and doing all kinds of things. I was quite envious and also worried that I would never get the chance to do any of those things. The fact that my initial visits to meetings and conventions of autistic people were fairly disastrous from my perspective (especially in terms of what I got out of them versus what I lost from them) confirmed my impression that I was just somehow not the sort of person this happened to.
It should be understood that at that time in my life my sense of self-worth was, like that of many auties, somewhere lower than dirt and I honestly had no clue why anyone would even be interested in me. So it was a natural conclusion that these interesting and cool and exciting meetings happened to other people, not to me.
Now I live near an autistic friend that I’d visited more than once before moving here. I have been to places where autistic people gathered for various events. I’ve met several parents I like. I have had several autistic people stop by my apartment, some of them traveling long distances to do so on the basis of Internet friendships. And now people are coming to see me during Autreat season and such: I’ve finally gotten to meet Kathy Grant (who is very obviously autistic and very cool), and a couple people I met at Autreat a few years ago are stopping by next weekend.
In other words, I actually have somewhat of a social life. The people who hang out with me are interesting people and they are not using me or messing with my head. They seem to show up because they like me and I like them. Not all of them are close friends, some of them are acquaintances.
Even when I used to dream what I thought was a futile dream of meeting people who understood me on certain levels most people didn’t, or who could at least tolerate these aspects of me, I never expected this. I was told in so many ways never to expect it, even prevented in many ways from forming bonds that might otherwise have formed, that when it happened I almost didn’t believe it was happening. I didn’t expect to have both close friends and friendly acquaintances. Meeting one person would have been more than enough for me. This was simply not in any of my predictions, and in seeing those stories of meeting people I had no reason to believe anything like that would happen to me.
The interesting thing to me, is that my getting to know people has happened outside of the formalized group settings I was told to expect this from. I have never experienced these things at a support group or a convention. I have a lot of trouble getting to know people in places like that. Even when I’ve met interesting people in groups, it’s tended to be things like a local public book signing with prior Internet warning, or small numbers of people converging on where I live or me being one of small numbers of people converging on where someone else lives. Something relatively unstructured and without clear edges and rules and so forth, or where we can make up our own structure as we go along.
I’ve written before about the few friendships I sort of managed in institutions, but the truth is that most potential for friendship was utterly destroyed by staff before it even started. I was incredibly, incredibly isolated, living among a lot of other incredibly, incredibly isolated people. A friend with similar experiences said, “It’s amazing how they can put all these people in one room and make every single one of them feel alone.”
People were encouraged by staff not to speak to me. They were also encouraged to loudly proclaim that I clearly had no interest in, or sometimes awareness of, other people. I had almost no means of combatting this, since I knew nothing of my outside appearance, which I now recognize included not talking, not looking at anyone directly, not responding to people in ways they understood, and not moving a whole lot, much of the time. The few people I got to know were people who made an immense effort and ignored staff, and most of that didn’t last long before being forcibly broken up.
There was the girl who sat next to me and chattered at me for hours and got excited at even minimal response. Staff told her off. There was the roommate who developed a secret code with me and helped me raise hell. Staff separated us and made sure we both heard that we had nothing in common. There was the autistic boy who ran into my room and grabbed my hand whenever staff wanted to tie him down to keep him from sitting up and rocking. He got tied down. There was the girl who made a strong effort to talk to me and include me in activities at the group home. I was explicitly told by a psychologist there that I was disgusting, totally inappropriate, definitely not friend material, and that she only talked to me because there was nobody else to talk to. And then, of course, there were a few guys who wanted sexual relations with me, I tried really hard to actively avoid them, and staff couldn’t see why and viewed not wanting to be groped as deviant behavior on my part.
These were, on the whole, tiny bits of interaction in a very long sea of non-interaction. That non-interaction was reinforced by the environment, reinforced by staff, and reinforced by the fact that most people viewed my appearance as meaning that I had no interest in, possibly no awareness of, the fact that they existed.
And I was sometimes painfully aware of that isolation, despite anything anyone might claim about what I was capable of at the time. I could not understand what it was that made people not want to be friends with me, nor could I even appear as if I was interested in making friends. When I finally was able to ask a few questions about that stuff, I was told, almost accusingly, that I was clearly totally happy alone and clearly didn’t want things like friends in my life. One person told me I just gave off an aura of aloofness. I was baffled. In many ways, I still am.
This, by the way, is why I think that measuring social desire by appearance is a bunch of crap. It is true, there have been times when I was much happier on my own. There have been times when I could not conceive of “social,” or of “people,” or of a lot of things that most people find obvious (not just in the social realm).
But I read things that classify autistic people based on how we appear socially, and I know that I don’t fit. People talk about one kind of autie “wanting to be social and making odd social approaches but bungling them,” and another kind of autie “not wanting to be social and maybe not even understanding ‘social’,” and I see myself sitting there being described as being in the second group because unlike the first I could not even translate my social desire into a social approach that anyone could see. Merely staying in the same room and people and thinking about them does not apparently make a person “look social,” but that is what I thought for a long time, and I was shocked to find out that I was regarded as very asocial during times when I was more socially engaged than I’d ever been in my life.
At any rate, when I got out, much of my social interaction was with people who abused or exploited me. Even my entrance to the autism community involved run-ins with people who, whatever their intentions might have been, valued me as a textbook rather than as a person. I was barely starting to figure out who I was and how to fit writing around myself instead of around stored brainwashing, and there were people asking me for answers I couldn’t give them. I found out the extent of the gap when I started becoming more myself than I had ever been in print, and people were telling me they didn’t much like me anymore. Now that I had opinions, now that I was becoming marginally happier, now that I was not presenting as simply a swirling mass of confused things that I’d been taught to say and do, I was far less acceptable to many of the people who had liked me as a human textbook.
All that is to say, that going from that background to having friends and friendly acquaintances was an enormous leap. I didn’t really believe it at first. I kept wondering where the catch was, what they were going to expect me to do, or what they were going to do to me. I even wondered at times whether they were people I used to know pulling an elaborate prank on me, because they knew things about me I never had to tell them, and because some of the people I’d used to know had pulled far more elaborate and cruel pranks than that on people.
Many of the friendships started with a kind of eagerness on both sides that I’ve come to associate with people who are deprived of friends for a very long time. Interacting with each other until one or both dropped from exhaustion or went into shutdown was not uncommon. I think a lot of us were afraid that if we stopped to take a break, the whole thing would disappear.
Also, many were used to a different kind of social interaction required of them from a non-autistic world, such as at their jobs, or institutions, or school. One man said he enjoyed coming over because it was “autistic space” for once even if it was only two of us. Another man, who has since been prevented from contact with the majority of his friends, was so frantic to drink everything in before the inevitable return to the very restricted life he lived in an institution, that he didn’t fully experience them until he got bad to said institution. He often cried and asked us if we were a dream. Many people viewed being around auties or autie-friendly people as a refuge from more typical demands on interaction.
I think I’m finally at the point where I rarely ask my friends, “Why on earth do you like me?” I don’t think, though, that I’m ever going to lose the kind of gratitude I have for the fact that something like this exists. It’s not something I’ve ever been able to take for granted in my life and I don’t think I ever could. I’m also learning a lot about how to be a friend that I never had the opportunity to learn before.
I worry a lot though about people who are in the position I was in a few years ago, going “How on earth do these people all get to know each other?” or, back a few more years, “Am I ever going to meet anyone who remotely understands how I operate?” I’m afraid that loneliness among autistic people, including among people considered too severely autistic to want friends, is rampant, more the rule than the exception.
I’m afraid that many autistic people will never be able to use the Internet to get to know each other. When I was interviewed for NPR and asked about the role of the Internet, I actually gave a much more detailed answer. I tried to point out that some autistic people can’t read, or can’t write, or can’t use any particular standard mode of language. For a long time I would not have been able to consistently use language to connect to people, and I was still lonely: “I am reaching out to you/Through the walls of my body/But my arms are not my heart/In the end you must find me.” I knew autistic people who may or may not have had typical language but certainly had loneliness. Only the part about the Internet being good for a very specific kind of autistic person I mentioned made it onto the air.
I worry also that for many such autistic people, things will become mechanized the way they do in systems. “Here’s your friends program.” “Here’s your social skills program.” “Here’s your recreational program.” “Here’s your support group.” I know that I have never thrived in such environments, even when they are created by autistic people. There’s something about the structure that wears me down and switches me off. There’s something about the social conventions, even of other autistic people, that wipes me out and gives me very little in return, allows also me to give very little to anyone else. For the most part I no longer subject myself to such things, and I cannot imagine being alone in that.
So that does make me wonder, how all those autistic people who were in roughly my position before, are going to end up in situations like I have now, where I have a lot of people who seem to know and like me because I’m me, not because of some use they have for me. Or whatever other social situations they might want, or might want if they had the chance to experience it, given that if they’re anything like me they may have little idea what good social experiences even look like until they stumble across one.
In the end, this is not a “Wow, I’ve come home, I’ve found this wonderful community” post, even though it’s definitely a “Wow, I can actually make friends” post. I’ve read about those experiences, and I respect them, but they are not mine. I will probably never feel ‘at home’ in the autistic community, or the disability community, or the gay community, or any of the other communities I’m supposedly part of. And I am too aware of how many people are shut out by these communities, to become fully comfortable in them, although I will continue trying to broaden them.
Ballastexistenz 