In my last post, A Long-Delayed Reply to the Schafer Report, I touched on something that I’ve described before as like watching a ping-pong game.
I am frequently represented as having spent my entire childhood in an institution, as never having spoken in my life, and as only having been in one institution, usually people assume the kind reserved for developmentally disabled people. In fact I only spent part of my childhood in institutions, I spent time in several of varying sizes and shapes and with varying kinds of people inside, and I have produced plausible-sounding speech sounds with my mouth in the past. Some people view me as misrepresenting myself when they find this out, or even as lying about events in my life, but it’s usually more a matter of the fact that I’m not going to tell my life story every time I meet someone, and my life story defies enough stereotypes that people’s initial assumptions are likely to be wrong. It’s simply too complicated to give out every nuance every time I talk to people, and I am aware that people assume all kinds of things that I don’t have the time to correct them on. If I cannot now speak, have spent time in institutions and say so, and did so in childhood, people fill in the blanks with the rest.
Generally, when people see that I type to communicate, they assume some combination of:
- I can never or only rarely form useful speech.
- I started typing through facilitated communication.
- I have never been able to form useful speech, or even useful-sounding speech.
- I always type as well, or as poorly, as I am typing when I first meet the person.
- I have trouble with the mechanics of speech, but not with language.
Now, some of these are true.
I can never or rarely form useful speech. My utilitarian (as opposed to just random sounds) speech skills vary from none at all to assorted grunts and the occasional word or phrase. And the occasional perfect French sentence that leaves me wondering how on earth I got wired like that, but that has very little practical value.
Some of these are true only some of the time.
I do not always type well, nor do I always type badly. I can type anywhere from among the fastest typists out there, to so slowly that it’s hard to see I’m actually moving.
I sometimes have trouble with the mechanics of speech but can type perfectly good language. I often have trouble with language too, and have to expend a lot of effort putting it together.
Some of these are not true at all.
I did not start typing through facilitated communication. I started typing when I took refuge during breaks at school in a computer lab that had a typing tutor program. I learned to type by doing what the screen told me, and I drilled myself until I became faster and faster.
I did not always have trouble speaking to the degree that I do right now. I gained a small amount of speech as a child, lost that at the usual age that many autistic children lose that, gained more for a bit, and then gradually lost that as well. My suspicion is that speech has always been something that takes a lot of brainpower, is unnatural to me, and is one of the first things to go to conserve energy for more important things, and has now been more or less permanently done away with. (This does not mean this was a choice, this is a set of priorities reflected in the way my brain functions, not in my own decisions, although I happen to agree with it.)
But… this is only just the beginning.
When I explain all these things to someone, it is rare that they understand what I mean. They tend to create a whole new set of assumptions, including:
- When I did have speech, it was always functional, as in it always connected to a thought I was trying to convey.
- I never use facilitated communication.
- I started being able to meaningfully communicate through typing as soon as I became able to physically type.
Well… not so fast.
When I did have speech, it varied from connected to thought to totally disconnected from thought.
I use facilitated communication sometimes, ranging from support at the wrist, to the elbow or back, to someone sitting near me.
I learned typing-as-communication separately than I learned typing-as-mechanics, although typing was always more firmly connected in my brain to communication than speech was.
And this isn’t even the end of it, believe it or not. Some assumptions that tend to follow on from that:
- You could tell the difference between speech that was connected to thought, versus speech that was disconnected from thought.
- My facilitators are trained in FC by FC professionals and move in FC social circles.
- My facilitators are always human.
- My speech is free from “facilitator influence”, whereas my facilitated typing is suspect.
- Writing, typing, and speaking are the only forms of communication I have used.
Speech that was connected to thought and speech that was disconnected to thought could sound the same to a casual observer. They could sound very much like they should have been connected to thought, and they could sound very much like they were just words being said with no real communicative purpose. Either one. And most outsiders could not tell the difference.
Facilitators have generally learned to assist me with doing things, not just specifically with communication, through long periods of interaction with me. They learn which body parts to touch, in what way, for how long, and when, in a very natural way that reflects general interactions with me. They become people who can sit next to me in a particular manner that helps me order my thoughts and movements. They are never told specifically “this is facilitated communication,” the facilitation I use for many actions is just part of what they do for me, and happens to extend to communication sometimes.
My cat is formally recognized as a service animal specifically because she has a knack for those exact ways to nudge, poke, press, and support me. Teaching her to assist me in these areas was easier than teaching some humans. Therefore, technically, my cat is sometimes my facilitator. (I wonder if anyone will accuse her of writing for me!) This may be funny, but it’s not a joke, this is true, she is a service animal because of this.
I have certainly experienced unpleasant levels of undue influence from facilitators before. I have a vivid memory of someone helping me move a spoon to my mouth (not by grabbing my arm and pulling, just by applying pressure in the right spots), and I wanted to do something else with my hand. By the miniscule tightening and loosening of their own muscles, in a way they weren’t even aware of, they made it impossible for me to move my hand the way I needed to, but I could freely move it the way they wanted or expected me to. And I have experienced other forms of ‘influence’ of this nature as well.
However, my experience has been that it is much easier for someone from the outside to influence my speech than it is for them to influence my writing. Perhaps because most of my speech has been the result of “outside influences” of various, not always good, sorts.
My experience has also been that there are people who can exert a certain kind of influence without touching me, from anywhere in a room. They somehow never get called on it, while people assisting me with communication are always regarded as the ones doing it. (I have a strategy of spotting and avoiding such people, but it is not always possible for me to avoid them. They’re generally easy to spot though.)
I have used many other types of communication. Some of it is only visible to other autistic people. Some of it is only visible to people who’ve been institutionalized. Some of it is only visible to people who’ve been institutionalized and had significant problems with standard communication methods (or been prevented from using them). Some of it has to do with the arrangement of objects, the placement of music, and other things that are subtle to most people but do have a language.
Some of those are more comfortable to me than words will ever be.
…and believe it or not, this can go on. And on. And on. Not only in the area of communication, but in nearly all possible areas.
Obviously, very little of this can or should be said in brief interactions with people. This means that people are almost certain to draw several wrong conclusions about me, all at once, and then relay them to others, who believe them as fact.
To be clear, I don’t think there is anything too unique about these aspects of my life. It is not the uniqueness, but the departure from stereotype, that confuses people. It’s a situation where anything that I say will be taken in one more stereotypical way, unless I spend a lot of time chipping away at it.
This is one reason that I hate being told I mislead people. I do not intentionally tend to mislead people. What happens is that people’s brains mislead them and they blame me for it.
I once got a series of sharp accusations of lying, from someone who assumed that I was in an institution throughout my entire childhood. Now, I hadn’t said this to them. It was not true. I had not even hinted at it. But the fact that I was in institutions for part of my childhood means that many people will read it as that. This particular person became very vicious and started demanding to know how I did various things that happened outside institutions, if I was inside institutions at the time. (Simple: They happened at different times.)
Another time, someone told me that having had a boyfriend meant that I wasn’t as severely impaired as I made it sound with my descriptions of my experiences with perception and action. He acted as if I was deliberately misleading people when I described my experiences. The fluctuations in ability over time, combined with the circumstances in which I had a boyfriend, combined with everything else, were not things he contemplated before accusing me of lying or exaggerating.
These are representative of many people who regard me as a liar rather than recognizing their brains as lying to them about the meaning of what I say.
My life is an extreme departure from stereotype. It is not the form of departure from stereotype that is easily resolved by taking on another stereotype, because it pokes right through all of them and all the edges. It is not that my life story is all that unusual — I have had people mistake me for several other people with similar life stories — but that this kind of life does not fit any prevailing stereotype of autism or even of human functioning in general, and it does not fit in a really, really big way.
It is easy for people to assume that I am simply stubborn and wish to refuse to be pigeonholed. Actually, a nice pigeonhole to settle down in would sometimes be very comfortable and inviting. There are just none that actually come close to fitting my life. So I can’t use any for very long, even if I want to.
It would also be easy, in a way, to just let people assume, and in many cases I do, because there’s no possible way of conveying everything in a short time. It is utterly exhausting to be slapped in the face with people’s accusations and assumptions based on the way my life and body won’t bend to what they want it to bend to. It is utterly exhausting to watch people play ping-pong with stereotypes, to correct people only to have them bounce to an opposite stereotype that is no more true than the first one.
If it were just about me, I might leave it at that. I might say, “It doesn’t matter that some people assume just by my writing that I fit their ‘high functioning aspie’ stereotype, and others assume by what I write about that I fit their ‘low functioning autie’ stereotype, and so forth. I know who I am, my friends know who I am, that’s what’s important.” And in a way, it is.
But it isn’t just about me.
A lot of things about autistic people’s lives are decided on the basis of assumptions like these. If some of us are able to make visible the discrepancies between the assumptions on how our bodies work, and the reality, then it makes us more visible as people and less as caricatures. There is something quite important about that. About saying “Hey, wait a minute, we will not be buried under your cardboard cutouts, we are real people, and we exist! We exist in more diversity than you may even want to know.”