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 wrote:
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.”
Ballastexistenz 
I think I first assumed that you could walk and talk much as a typical person, then when I heard that you use a wheelchair, I assumed that you always use a wheelchair… then I learned that you didn’t always use a wheelchair. When I learned that you use a keyboard to communicate, that was hard, since I always “heard” your voice talking when I read your words. When I found out you use a keyboard thing to communicate I figured that you never talk and never talked.
so… yeah. Even me who tries to understand, and who likes you, has a hard time not putting you into categories that you don’t belong in.
The wheelchair thing might be because I have only really known people who always need their wheelchair and can’t walk at all…
And I always did suspect that you were a cat. You have slipped up and admitted to meowing before, you know. :-) Anne has met you, I think she said you meowed.
You have an uncanny tendency to publish something relevant to what I’m writing about, just before I finish it.
Not that I’m complaining.
elmindreda: Now you have me curious about what you’re writing.
I just finished it (after about two weeks).
Well, I can’t say I “know” you in any real sense other than having read your blog for a bit, however, I’ve never thought you were in any way misrepresenting yourself. I tend not to make assumptions about people or extrapolate anything beyond what they actually say / write — because unless I have some compelling reason to think this person is blatantly deceptive, then it doesn’t occur to me to start reading generalities into the specific things the person is discussing in a given article, speech, blog entry, etc.
Sometimes when I write about my own life, I read back over what I’ve written and find myself thinking, “Is all that really true? Am I really like that?” Because some of it sounds, well, self-contradictory. Like you, I find it impossible to describe my “functioning” level — this depends on the environment, the time of day, where I am, how tired I am, how much I’m attempting to do, etc. I have always been able to speak (at least in the sense of forming words and sounds) but this speech has not always been communicative — originally it was very echolalic, and sometimes it still is.
I have been in bizarre situations due to my inability to function consistently in a manner other people consistently think is “normal” — I can go from working contentedly on a project to curled up and whimpering because I heard a noise I couldn’t stand or because someone asked me a question before I had any words to answer it with. Sometimes I almost, almost wish I did not have such “variable functioning” because it makes it all the more difficult to explain changes in my demeanor and responses to stimuli. How can I explain that on some days I can have a verbal exchange, but on other days I might as well just type everything because that’s the only way the language is going to make sense? How can I explain that yes, I can work at a desk in a quiet area and perform as well as anyone else at my level of job experience, but I cannot drive a car, travel alone, or any number of other things that are expected of someone my age / position? It’s like I have to work twice as hard just to convince people that the variability is real — and not some sort of weird manipulative tactic, and not something I just “need to get over”. (Note again that this isn’t a “poor-me” statement…it’s a fact.)
I also know what you mean about the difficulty in relating one’s life story: lives are not neatly or easily described overall, simply because so much can happen in the space of a year, and certainly more in a decade or two. I do not fear being embarrassed or thought of as foolish, but I do feel some sense of fear of being misinterpreted because in any given writing or answer to a question, I cannot possibly provide all the context I have in my head.
The thing is, I was rather surprised to find out that other people tend to “fill in the blanks” when they hear stories: this is something I only learned about recently, and something I myself have never done. If someone tells me something all I know is what they told me. Any sort of “filling in the blanks” would feel like wild speculation so I just don’t bother.
Regarding wheelchairs, where I live, most of the people who use wheelchairs, use either motorized or manual wheelchairs, and use them part-time, with part-time ranging from being able to stand up and walk a few steps, or walk a fair distance. The only person I know of here who uses one full-time doesn’t have any legs. Many of the ones who use them part-time, including me, use our feet to push our wheelchair, something else you don’t normally hear about.
I do make assumptions, probably much worse than Camille. I hope I’m open to alternatives, I hope I’m not judgemental, but I fear that I am.
I love the picture by the way. ‘Cat in Bath With Banana Boxes’ would be such a great title for any kind of art installation!
Camille, it’s true, Amanda speaks Feline. Blrrrrrrt?
She also communicated with me vocally without using words, and with body language. Plus, of course, by typing.
You know how a cat will be napping on the bed, and then suddenly leap up and be looking out the window? And you go, whoa, what was that? Amanda kinda moves like that sometimes, which also points to her being part cat.
I know what you mean about stereotypes. They are a generality at best, and generally the only generality I subscribe to is that they are useless for describing people. People are far too variable.
I was sitting in a lecture today beside my boyfriend, and we were watching a documentary on gay black men. It was made by gay black men in the late 80’s. (http://imdb.com/title/tt0103099/) At one point an individual is narrating his expreience with interratial dating. I sat there and thought to myself “if anybody in this room were to regard my boyfriend and I, they would see what this man is saying.” Then I thought “This film describes our relationship in no way at all.”
Maybe people need to learn to ask questions. It may take longer, it’s worth the time though.
anne: More likely that I was partially raised by cats. I slept with one as soon as I stopped sleeping in my parents’ bed, so I think cats and humans had an equal part in my upbringing.
Lots of autistic people I know seem to have been partially raised by cats though. :-)
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I think I understand the ping pong very well by the above sentences. If it were in the introduction, I would immediately get it. I for some reason have some disparate communication styles to most everyone I know. It is loggorrheic. I also relate to the cat like way of doing things mentioned above…and also do that “perking to attention suddenly” at something most people don’t notice etc. In general, I tend to do things that surprise people because of my individual/unusual thought pattern/style. I suppose that no one will ever be able to be ready for my way of doing things to accomodate me without just becoming more accomodating in general.
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Since I saw your video I wondered about the way you communicate in your native language and I finally gathered courage to ask about it. I wouldn’t feel offended if you don’t want to deal with me.
How is your experience with standard language? Was learning it hard/easy/pleasurable?
You know, I was taught that ‘language’ has to have a symbolic meaning, a message. What do you think about this?
When you feel your environment, are you communicating with it? How does that communication occur?
I know I’m ignorant but I can help but ask to know more. Sorry if I offend you in some way. Your video really made me see that I live in darkness in a lot of aspects, it was a real challenge to my view of language and communication.
Sorry for my bad english, it’s not my native language either.
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I love it! Cats as communications specialists! This makes perfect sense!
I’m not being a jerk…my son was born on the same day as his cat, and when we brought him home from the hospital, the Momma Cat promptly put one of her kittens in the crib with him. They’ve been glued at the hip ever since, and I swear Bubbles understands him more than any human being ever will.
Then again, I was raised by a cat, too….
Meow.
(Okay, not very reflective. But it does get the point across, methinks. Yay for alternative methods of communication, and also yay for cats.)
It’s so fascinating when folks (eh, pardon my colloquialisms) Confuse perceptual reality with empirical reality, and then act as though false empirical data was supplied. It’s also frustrating- No one should have to explain their entire life story *just* to provide context.
(If this makes no sense, let me know. I haven’t slept in 24 hours, and while it typically takes longer than that for Sleep Deprivation to hit I never know.)
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I just read this again after first seeing it several years back. Listening to you is important for me. Your abilities to ‘work around’ the brick walls in autism keep me focused on the potential for my son. Write on, write often and write your way past our closed minds.
be well ~ terry holden
Hi! Just stumbled on your blog now. Fascinating reading.
“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…”
I completely understand what you mean. For me, translating my Aspie way of thinking into a more NT-friendly format takes a lot of energy. If I don’t take the time to rehearse what I want to say in my head first, it comes out as stutters, unfinished sentences, crazy word order. And then people think that because I have difficulty speaking, I must be stupid. The information is all there in my head, it’s not my fault there’s no easy way for me to hand it people in a way they understand. It’s depressing. And then when I run out of energy to make that translation from my way of thinking to theirs, and become mute, it becomes “you’re sulking”.
I enjoyed this, immensely. You opened my eyes to the possibilies of the folks I worked with at an institution. I loved every one of those guys.
It also got me to thinking about how everyone makes assumptions about other people, until they are told otherwise. So, it would seem that this whole blog was a waste of time, since, as you pointed out, your experiences are relatively normal. And, also incredibly annoying, like it is for just about everyone.
But, you helped me to figure out that it’s about the limitations people assume we have. And at what level. People assume since I can make eye contact, am not overly sensitive to touch, and speak in whole sentences, that there is nothing wrong with me and I should be able to do it all the time. What they don’t see is my husband laying on me, because I’m having a meltdown from 5 minutes of making small talk with someone who I know I should remember, but dont.
Sadly, I even put limitations on my lil aspie angel. I am always surprised by how her brain works and what she remembers and her ability to grasp concepts that full grown adults can’t seem to understand. And yet, I want her to go play with the kids across the street and clean her room.
Maybe, if I could figure out how to quit expectations, I can quit expecting more from myself and my angel. I just wish I known how to encourage her to be everything she can be, without her growing up thinking she should always be better.