The next Disability Blog Carnival is on how disabled people do things differently. This may not be my only contribution, but I’m going to send it in case I don’t have time to write another one.
Part of this post is going to be taken from a document that I don’t show to a lot of people. I wrote it in 2004, about the long and twisty path I took to understanding certain things about the world, and myself, and to gaining certain abilities. Unlike many autistic people I know, I have few to no moments of sudden revelation (to me or to others), sudden ability, sudden anything. I have nothing like the woman I know who deliberately taught herself to make speeches using among other things a radio, when prior to that she had immense difficulty with speech. Nothing dramatic and exciting like that.
There’s a book that I read, that I don’t want to name in case it spoils it for some people. But in this book, a boy tries to get everything he wants, and gets more and more lost. He has a long series of bizarre adventures, going in all kinds of directions, thinking he knows where he’s going but not really understanding a lot of things, at least not on the surface. He just sort of drifts along on whims. Then eventually he comes to some important realizations about the world, that he didn’t even know he was going to make, based on all those twists and turns. A woman in the book tells him, “You took the path of wishes, and that path is never straight.”
There are some ways in which I have been like that boy. Not that I have drifted around on a whim, but that I have often never understood what I’m learning at any given time, and that things, under the surface, meet together and gradually coalesce. When any moments of revelation happen, they are the result of all that twisting and turning, every bit of which was necessary, none of which I had understood at the time. I get fragments of understanding of various things, and eventually, even if I don’t see how they’re doing it, they fall into place when I’m least expecting it. But this is gradual, and it is in many ways non-deliberate.
When I was a certain age, I was very confused about communication. It’s hard to describe that state of mind in a language that is developed mostly through use by people who have not had the experiences I have had. Even many autistic people I know have not had this experience. I have, though. Remember, that I was not thinking these things in language. Remember also, some of these things are things I may have known before, but forgotten in one of the brain-scrambles of puberty. I have no way of knowing at this point, all I know is what it was like for me.
I had, bits of abilities at communication, not the whole thing. And these bits and pieces do not work well when not connected to each other. I was intensely aware of my isolation from other people communicatively. I made some efforts to communicate, such as by playing tapes, that were not understood as communication (because most people play tapes to listen to, not to tell others things — but you’d think the point at which I actually made a tape with tiny bits of sentences that all meant something very obvious, would have been, well, obvious). Meanwhile some of my actions that were not intended to be communicative, were falsely understood as communication.
One thing I knew — and knew absolutely — at one point, was that somehow, I was not alone in the world. That the things I was experiencing were not unique. And that whatever thing was missing for me right then, and I only had the vague shape of what it was, would be told to me in the future once I met someone who was autistic. No, I didn’t know it as “autistic,” I wasn’t using words, but that’s what I meant. Someone who thought along enough similar lines as me to understand things.
I felt like, if I were a house, the front windows were boarded over with pretty heavy-duty boards. The front door led to a dead-end passageway like the stairs in the Winchester Mystery House that led to the ceiling. Not all of this was innate to me. Some of it was later done to me, reinforcing the boards with heavy-duty steel, and painting up that dead-end passageway to make it look more like a house, not the house I lived in, and not a normal house, but a different house altogether. But I wasn’t fooled, because I was in the rest of the house. (This is an analogy I formed before I ever saw the t-shirt, by the way, that said, “The lights are on. Yes, I’m home. You’re just not looking in the right windows. Keep trying.” But I love the t-shirt and am wearing it right now.)
And, what I desperately needed at that point, and knew it, was to find someone who knew how to get in the back door, because they lived in a house shaped enough like mine to know where to find it. I hate “unlocking autism” metaphors as much as anyone, I hate the psychoanalytic garbage that goes along with them, this is not what I’m talking about. Any psychoanalysts or would-be psychoanalysts with fantasies about “unlocking” or “solving” autistic people as if we’re locked boxes or riddles, go home and unlock (I could have used a ruder word there) yourself. I’m talking about someone who had enough common knowledge with me to form the basis for me to learn certain things from them. Most people did not experience the world in any way close to how I did, and so the things they wanted me to know, and the things they said to me, never quite connected in my head.
My experiences in the next several years were unfortunately not promising. For one thing, I was heavily drugged, which fragments a person in ways that have to be felt to be understood. For another thing, I was pretty much given up on. For yet another thing, all people who connected to me (I had pretty much no ability to reach out to people myself in any way they’d notice) were subsequently told or forced to get away from me. For another thing, there were plenty of people working on the painting of that dead-end room and re-boarding of the windows while claiming to be helping me.
I’ve described my experiences in that system as follows (this is another analogy from the private piece of writing):
Imagine being in the middle of the road. You might not know what a road is, or notice that you’re standing there.
Then, somebody deliberately hits you with their car hard enough that you are too severely injured to get off the road on your own.
Then the real fun begins.
They tell you that hitting you with a car was, indeed, helping you.
Then they start screaming at you, “Get off the road! What are you, an idiot? Oh I see you are an idiot. I’ll need to run into you again then. Are you nuts? Actually, yep you are, better run into you again then. Hey, I keep running into you, so why don’t you get off the damned road already? Dumbass. Can’t you see how much I’m helping you? You deserve to get run over.”
That’s of course a metaphor for a wide variety of experiences, and doesn’t match all the details, but I don’t want to get into details, and in some cases don’t know how to describe the details without metaphors, so the metaphors will have to do.
Anyway, one of the things that was drilled into my head somehow by this experience was in fact that nobody would, could, or even should know what was going on in my head. By that, I don’t mean telepathy, but just, basic empathy. Like, the way a woman who’s had her boyfriend cheat on will have some idea how another woman whose boyfriend cheats on her feels. There is a vast common context that most people share, and while being a human being I shared some of that context with some people, there were large enough chunks of that context that I did not share, that I was very confused by everyone, and so was everyone by me.
It’s hard to describe what it meant to me when I happened upon someone who did understand that context. I was trying to describe it to someone the other day, and only could get at it through metaphors, and was being confusing. Maybe I will have to be confusing again.
This is a direct quote from the private communication document:
What she did, though, is difficult to describe, because any interaction between two people is unique. If either one of us had been a different person and tried the exact same actions, they would not have worked, although working from the same values might have. People are not programs. There are no two identical. If she had treated me as some kind of formula, she would have been like the “experts” who preceded her in my life, or like some autistics I had met who assumed all autistics were alike.
And that is important to keep in mind. I’m not giving formulas here, I’m talking about my experiences.
All I can say, is that she used language in a way I understood. She used it based on a context that she could perceive that most people could not. A context close enough to what I perceived to make it work. She was someone capable of getting in the back door, so to speak, and talking to me inside the house, rather than all the people standing around in the dead-end front room yelling at the walls and thinking they were having a conversation with me.
And within a very short period of time, I began changing too rapidly for most people to keep up with. This was still not sudden. It was gradual. But understanding was happening that had not happened before. A lot of those random meandering things I’d picked up clicked into place, because someone could show me the places they went. I don’t think she did it on purpose. I don’t think it’d have worked particularly well if she had. But she came along at the right time.
One thing that helped a lot was communication with me. Most people before that did not communicate with me. They communicated at me. They either were telling me what to do, or attempting to hold a conversation with something that from what I could tell was three feet away from me, or inside their own heads, and nothing to do with me at all. I was stunned that someone was talking to me instead of to all kinds of hallucinations in their minds that were not really there, and getting to know me instead of telling me what to do.
Another thing was having a roughly equivalent frame of reference. It was like I had spent all my life around people whose lives were built, some more and some less, around a shared hallucination that I couldn’t see. All their references in communication pointed back to that hallucination that I was left out of. They did not necessarily bear me any particular malice, but they did not make sense to me because I couldn’t see their hallucination, and I didn’t make sense to them for the same reason.
And so along came someone who didn’t perceive the shared hallucination either, and thus could perceive a lot more of the world that I perceived. And who made reference constantly to things I could perceive (and that a lot of the hallucinating people were too distracted to perceive), in her conversation. So understanding what she was talking about, and in turn what other people were talking about, and how to talk about things myself, was easier. Words that made reference back to reality were a lot easier to create, follow, and sustain.
Getting back to my last post, this does not mean that knowledge has been the entire solution to anything. There have been other things besides knowledge going on, otherwise I would be able to simply open my mouth and speak words that pertain in some way to what I am thinking. When really, still, putting words to thoughts, is still difficult, and putting a mouth in there, is still next to impossible.
Another analogy from my private document (I might have used some of these before in other posts, I can’t remember):
Speech felt like using a very long, heavy, rusty lever. I stood way at the back of my head yanking on this lever, aiming at an out-of-focus pocket of words yards in front of me. The lever was so long, and the pockets of words so far away and so pre-fabricated, that usually I would hit another pocket of words entirely.
This is another thing I wrote about this:
As I learned things (not just communication) and became more aware of many things, I also became aware that I couldn’t do everything just because I understood it. I couldn’t put steps in sequence very easily. I had to work to consistently make sense of words, sound, sight, and touch. My body often froze in place and I couldn’t get it to do what I wanted. Even when it was not frozen, I couldn’t simultaneously direct it, think, and understand what my senses were telling me. The seizures that had been suspected since early adolescence were still there. So were lots of other things.
I learned to communicate about pain, and learned that the searing electric sensation that had been on my skin my whole life was called neuropathic pain and, more importantly than what words surrounded it, was treatable. The same medication seemed to take care of the seizures. I got a lot of other lifelong health problems treated, ones I had never known to communicate about, and nearly every one of them showed up on tests once I got doctors to believe that I had felt these things all my life and never said anything. For some reason that was hard for them even knowing I was autistic. They seemed to think it was natural for a person to know that “pain” is one word even though it refers to different sensations, that it is something one communicates about, and that anyone who had pain for twenty years would have said something by now. I told them about having an intestinal blockage and telling nobody. Most didn’t get it. I still don’t know what they imagined I was doing.
I began to understand overload and shutdown, and long-term shutdown and partial shutdown, and the effects all of these things had on my life. I began to realize exactly how narrow my focus on the world really was, but also how much I could understand once information did make it in or out through that tiny hole, if I gave it time. I had always put connections together in my head automatically after the fact, and I discovered that my ability to do so once the information got into my head was very good and led to important conclusions.
This is to say, no, it’s not as simple as gaining certain knowledge. Speech, possibly because of pre-wired stuff, and possibly because of the way people had tried to teach me it combined with pre-wired stuff, has simply not been a viable option no matter how hard I worked at it. And the harder I worked the worse it got. On the other hand, possibly because writing was picked up on my own, and on my own terms, it wasn’t as tainted. For whatever reason, it’s ended up being the only thing that works.
The following is, for the most part, the ending of the document, and a suitable ending to this post:
Gaining the ability to have meaningful communication so much of the time, my more meaningless attempts at communication have largely fallen away. I still have to use strategies that involve whacking at words in ways that use non-communicative versions of echolalia sometimes, because my strategies for communication still involve a good deal of communicative written echolalia. Many of the disconnected things I had learned over the years have slammed together to make me a good writer. I have worked very hard, and been very fortunate in who has been around at what time, in order to get to this point with communication, where all the necessary skills come together in a cohesive way instead of fragmenting all over the place.
I find, now that I can communicate more or less consistently, that I am incensed when people think I am either not really communicating, not telling the truth, or simply being led along by whichever person they happen to associate me with that week. Now that I put this much effort into what I say, it turns out some people still think I’m out of touch with reality or a liar (and people have even suggested I don’t actually write for myself). It hurts to have come this far and put forth this much effort only to reach disbelief, something I can do little about.
This disbelief has real-life consequences beyond emotional pain. When I was able – finally – to tell about pain that turned out to stem from twenty years of untreated reflux, I was told that if it had really hurt I would have talked about it earlier. People treated me like I was making things up or exaggerating. In reality, I have a high pain tolerance, difficulty with language around internal sensations, and under-report pain. [deleted another description of another medical problem]. While I am not a hypochondriac, I am very afraid that next time it will be something life-threatening and I will be either too afraid to go to the doctor or the doctor will dismiss what I have to say. This has happened in the past with life-threatening conditions, and somehow doctors never have to answer for their life-threatening attitudes.
The attitudes on things that are not as easily tied to life and death are problems too, though. One reason I have never been able to tell this story in this much detail before was because many people would not believe me. I have been told directly that my experience is unimportant, that it is narcissistic to believe I mattered enough. I matter plenty, and while I don’t matter more than other people, surely I don’t matter less. I once worked hard to explain my life to someone, and he said, “I used to study phenomenology. It was interesting, but there was no meaning in it.” My life is not phenomenology, and it is not meaningless. I have gained from reading the writing of other autistic people on what it is like to discover communication, and I am writing this to add to what is out there already. While parents, professionals, and interested laypeople will read this, it is aimed, like much of my writing, primarily at other autistics.
It also hurts when people say they liked me better when I couldn’t communicate as well. They sometimes say I am too judgmental now. I don’t think I am, but I am able to express my opinions now, and I do sometimes have opinions. There’s such a thing as being (or appearing, even without being) non-judgmental to a fault, taking in everything said to you no matter how nonsensical and either repeating it or being silent. That may be easy to be around for a lot of people, but it’s not communication. It has made me realize that some people don’t like me very much, but only liked what they used to be able to imagine I was. My thoughts were not always passive, but my actions often were. They still are, in fact, but I am now able to engage with them in ways that I couldn’t in the past, particularly through letting others know what my actions mean.
Through being able to communicate consistently in words, I have gained a number of strategies to live my life. I have been able to get to know people and to know what getting to know people means. I have been able to fight for services, ones that allow me to live in my own apartment, not an institution, and I have been able to fight to retain staff who are important to me and to fire staff who harmed me. I have made more friends, and we continue to influence each other, hopefully in good ways. I have been able to explain my behavior and explain what behavior I really don’t intend or want to engage in, like whacking myself on the head or hitting people, and I have been able to ask for help figuring out how not to do these things. I have been able to get life-saving medical care where in the past I nearly died sometimes because I couldn’t say anything about it. I have been able to explain to people why I can’t always come up with words.
I have also been able to explain to people why I neither need nor want to be cured, and why learning word-communication is not a cure for autism-as-a-whole. I have been able to say what autism-as-a-whole means to me outside of the usual equally fallacious concepts of “autism sucks because it takes away communication and makes it hard to do things” and “autism is great because it gives me l33t ski11z and makes it easy to do things.” To me, autism is a word used to describe the sort of person who has my sort of brain, who has certain characteristics that run deep to the core of perception and action. To me, this is a kind of person that the world needs to value for what we are, not cure to what we aren’t. I learned to word-communicate by learning from other autistic people the skills that it takes to work with my autistic brain, not against it.
When I was busy being written off in institution-land, some of these same autistic people were being dismissed as useless when it came to practical matters of teaching autistics to communicate. I am living proof that they are not, and that in fact some of them have done more for me than all the professionals put together ever have (others of them tried to force-fit me into their way of thinking and communicating, claiming to understand me when they didn’t, and those I have clearly resisted). Not every autistic person understands every other autistic person or knows enough to know how to listen and help another one communicate – we are all different from each other – but I don’t think I could have ever learned these skills as thoroughly as from those who have, themselves, had to use them. Communication and otherwise.
I know that there are parents out there who treat it like a joke that autistics could teach other autistics to communicate or navigate in the world. [Side note: I’m not exaggerating, some people have laughed like it’s a joke that this happened.] It’s outside of their experience, maybe. I know that some who have read my writing think it’s ridiculous that this is possible, and that some dismiss my experiences as anomalous. If my experiences are anomalous, they shouldn’t be. Autistic people can learn from each other, and learn how to do things our ways, which differ from non-autistic ways. I can’t emphasize that enough. The last five years have been the best years of my life, because I can finally have some control over my life and decide what I want to do with it. They have also been hell, because breaking free from hell (by which I don’t mean autism) can be a vertical climb at best. It still all amazes me.