Backwardsness

Standard

I remember this happening with several people I spoke to about the machine I tried at MIT: When I explained that it showed physiological stress whenever I moved (that is not remotely present in other people), they said something to the effect of, “Oh, so stress causes movement difficulties, and if you weren’t stressed out you wouldn’t have as much trouble.”

Well, yes, stress can add to movement difficulties. That’s discussed in an interesting way in Interactions of Task Demands, Performance, and Neurology. But I doubt that’s what the machine was measuring.

Imagine, for a moment, that you are running a great distance. By the time you get to the finish, you find yourself sweating and gasping for air.

Imagine further, that someone notices this. They then say, “Oh, you could move much greater distances, I bet, if we found something to suppress your sweating and panting.”

This would sound ridiculous, and be very dangerous for your body. Not being able to sweat is serious: I had that problem on some medications, and it greatly reduced my tolerance for heat (lower than it was already) and exercise. Panting is an attempt to get more air into your body more quickly, and trying to run on less air would not be useful.

But nonetheless, we have situations where they say “Your brain functions certain ways when you are depressed. Therefore these brain functions cause depression!” We don’t even know whether it’s the chicken or the egg, but they think they have the answer.

For another example, I saw an autism “expert” at a time in my life when I alternated between superficially good speech and either inability to speak or really bad speech, usually several times a day by that point. She told me that if she reduced anxiety, then I would not need to use a keyboard. While she picked up the fact that I was really stressed out around speaking, she didn’t pick up the fact that it was the act of speech that stressed me out, and that had stressed me out for my entire life, because of how difficult it was. She didn’t realize that a lot of the stress she saw was an attempt to use sheer momentum to keep speech going (or that this was a reason I talked so much when I did talk — if I stopped, I wasn’t always able to start easily again). Nor did she realize that a keyboard reduced my stress levels immensely in its own right. She just saw two things she thought were associated with each other, defined the causality on her own, and insisted she knew what to do about it and what the results would be.

Reducing stress is usually a good thing in its own right. (I say “usually” because sometimes, stress is a motivator that is indispensable to some people when doing certain things: there are times when if I don’t get enough adrenaline going into doing something, I’m not going to be able to do it. But I have to pay a price for that and so do most people, I have just paid a more obvious price than most, because losing speech is a tad more conspicuous than losing the ability to run really far for awhile.) But my strong suspicion is that this measured stress, for me, is a consequence of the effort of trying to move, not the cause of the difficulty moving.

I wonder why people so often get causality backwards on these things, and then seek to alleviate the result of a problem rather than the cause of it.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

24 responses »

  1. For another example, I saw an autism “expert” at a time in my life when I alternated between superficially good speech and either inability to speak or really bad speech, usually several times a day by that point. She told me that if she reduced anxiety, then I would not need to use a keyboard.

    Things like this are why I actually have a kind of anxiety about having my issues chalked up to “anxiety”, believe it or not. My speech right now is about how you describe yours at the time you had that run-in with the “expert”: sometimes it’s superficially very good, sometimes it’s very unreliable, and other times it doesn’t seem to work at all (at least in any truly communicative sense). And right now the only psych doctor I see actually thinks the keyboard is a good thing for me — her office is one of the main places I actually use it consistently, and wouldn’t you know it, she actually has the sense that I’m a very sane and not overanxious person.

  2. Yeah. I remember at the time that happened, in any single day, I had superficially-normal speech (some useful and a lot useless), very mangled speech, and lack of speech (for any of several reasons).

    I’d just gotten a keyboard, although it had no speech output. And I was in the process of discovering how much better my life was with it — even my friends were commenting on a total change in my perceivable personality.

    With the keyboard, I was more relaxed (because less work involved in typing), in less pain (because of pain involved in speaking), more spontaneous, and was able to show more of my genuine emotions (rather than either none or stored emotions — because fewer resources going to speech-and-only-speech).

    I also remember a guy from a CIL who met me just before I got my talking version of the keyboard. My case manager at the Regional Center was asking him what my anxiety levels were like before I got the new keyboard. He pointed up through the ceiling and whistled. Because I needed a certain level of stress as momentum in order to generate speech, and by that time in my life it was visible stress, although various people interpreted it differently from each other.

    So to a lot of people at times when I was speaking I seemed like I spoke normally (or close), but was some combination of stressy, anxious, scattered, over-intense, rude, inconsiderate, unemotional, overemotional, boring, crazy, argumentative, black-and-white, etc. Depending on the situation. But it basically boiled down to a lot of moral judgments because of the way I handled speech (and, because of the mechanisms I used to deal with speech, also how I handled all language). And while some of them continued, I got way less of it typing.

    So I suddenly turned more flexible, sensitive, perceptive, empathetic, and all the things I really always was (and knew I was) underneath all the speech, as soon as I started getting more and more into typing in everyday situations.

    It’s funny… I used to write over and over that nobody actually knew me, etc., but nobody knew how to take that. I wrote that because I was usually (with rare exceptions like a friend who didn’t require a lot of language, and in fact took great pains to understand the way I really did communicate at the time) only “me” when I was alone and not dealing with trying to talk. Speech was so hard that it often forced me into something that was either the opposite of my personality, or just something not really representative of who I was.

    And I had a strong knowledge of who I actually was, but I went for years with almost nobody seeing that. They just saw the way that trying to do something in a way that didn’t really work for me, distorted my normal personality. And then if I did manage to get it out in words that people didn’t know who I was, they thought it was a much more metaphorical statement (the way most people mean it, which seems different than how I mean it) than it actually was.

    One of my friends was even really blunt about it. She said “I like you better typing.” (She’d also been one of the few human beings who’d bothered to look beyond speech in interacting with me. The only other one I remember was an autistic woman who interacted with me in a non-speaking way because she herself didn’t use language typically. The only other ones who seemed to bother were cats.)

    But… yeah. People’s perceptions of the two, and of switching between the two, and so forth, are really strange sometimes.

    Anne: Did you ever get that sense of “trapped under spoken words that have almost nothing to do with your personality”? And did that get better with a keyboard? I don’t normally get the chance to ask people thee questions.

    (And I’m falling asleep at least once or twice in every sentence I write, so I’m going to leave now and go to bed. It’s weird to have dreams inserted and trying to find my place again.)

  3. Is the titkle of this post an intentional pun (on the fact autistic or otherwise cognitively disabled people used to be referred to as “backward”)?

  4. Anne: Did you ever get that sense of “trapped under spoken words that have almost nothing to do with your personality”? And did that get better with a keyboard? I don’t normally get the chance to ask people thee questions.

    I’m not Anne, but I have had this sense for a lot of my life. I don’t carry a keyboard, but all of my significant friendships have developed either online through typing, or in rare, intense face-to-face encounters where I was able to temporarily lift myself out through adrenaline and momentum. I am told that I appear constantly nervous and shy, and it is frustrating because in truth I am neither.

    For me it has gotten better with time and practice, though. I spent a lot of time in a therapist’s office, alternating between unable to speak, stilted words, and the occasional perfectly-flowing rote sentences. The therapist wasn’t aware that this was helping me – at one point he commented, “This is a problem that just does not go away for you, isn’t it?” What he didn’t understand, and what I was unable to explain at the time, was that it was going away, it was just a much slower process than he expected.

    Practice helped because for me, some of the trouble appears to be a consequence of anxiety over how my words will be received, so training in a friendly, receptive environment worked. Other aspects of the trouble appear to be inherent difficulty translating my emotions and empathy into spoken words. So even when I am not anxious, I am far more comfortable typing than speaking.

    I have a dyslexic friend with the opposite problem: he is keenly intelligent and emotional, but only able to convey it through speech, not written word. He has the same pattern of anxiety, except surrounding writing instead of speech. I suspect that it’s neither the chicken nor the egg in isolation, but a spiralling interplay of the two.

  5. “Correlation does not equal causation!”

    This drives me nuts because I see it all the time in newspaper reports of science. The paper will report that people who drink more than two cups of coffee are less likely to get liver cancer, and make the leap to “coffee prevents liver cancer” without the slightest mention of how that might not be true at all. Perhaps people who drink more coffee are also more likely to be employed, and therefore have health insurance and regular medical care, which may help prevent liver cancer.

    As for my two cents, I would like to see better teaching of basic hypothesis-testing and statistics concepts (such as correlation and when you can infer that one thing causes another, what it means if something is “statistically significant” etc) in high school science classes.

  6. PS– The medical model of mental illness, at least in some of the settings where it is applied, suffers from the same chicken-or-the-egg problem that you describe.

    When someone sleeps too much and doesn’t enjoy their hobbies, we describe that experience with the word “depressed.” When a relative asks, “Why does Bob sleep so much and why doesn’t he enjoy his hobbies?” we say, “Because he’s depressed.” It’s circular.

  7. Anne: Did you ever get that sense of “trapped under spoken words that have almost nothing to do with your personality”? And did that get better with a keyboard?

    Oh heck yes, on both counts.

    In general, if I want to speak coherently about a particular subject, I need to have spent a lot of time mentally piecing together phrases pertaining to that subject and checking the shapes of those phrases against my internal understanding of the subject. This has been the case for pretty much as long as I can remember. I’ve also always had a long “delay” between learning about/experiencing something, and being able to discuss that thing using language (and I can pretty much always write about something well before I can speak about it).

    Basically, there are two ways speech can “feel” for me. It can either feel “fluid”, or it can feel very halting and fumbling and exhausting. I was aware of the different ways speech could feel at a fairly young age, but only dimly — I suspect that since little kids aren’t held as accountable for their words as older kids and adults are, I sort of “got away” with avoiding the exhausting kind of speech for several years.

    Once I started being expected to answer spontaneous questions, ask for help if I needed it, describe how I felt, and describe things that had happened recently (i.e., “What did you do at school today?”), I started having a lot of trouble. It was like I couldn’t keep up with the language demands of my environment. I would occasionally have periods where I felt “in sync”, but this never lasted very long. And I’d find myself slipping into a mode where speech would start to “feel fluid” again, but wouldn’t necessarily have any bearing on what I was thinking. And that’s usually when I’d end up getting yelled at for “being rude”, “lying”, “making excuses”, or other transgressions. However, sometimes when I was in that mode I’d manage to say things that did apparently fit whatever pattern people were looking for, and in those cases, things tended to go very smoothly.

    The result of all this was that over time, I developed this totally warped concept of spoken communication. I knew that sometimes I said the “right” things when speech felt fluid, so I started to figure that speech-based conversations were like pattern-matching guessing-games imbued with a strong element of chance. I would hear other people’s words, and based on the shape of what those words felt like, I’d attempt to offer them back something in a shape that would complement what they’d said. My dad had a sense I was doing this, I think, when I was a kid — he would say things like, “You’re just saying what you think I want to hear, aren’t you?” And I was, in a way, though generally not in the “I want to placate this person” sense (it was more like I was trying to say the words I thought “went with” what I was asked, as if I were matching socks or something).

    I started noticing how much easier writing was than speaking when I was around 11 years old — I started using computer bulletin boards around that time, and while in the beginning I typed a lot of “scripted” stuff (e.g., generic complaints about cafeteria mashed potatoes, even though I liked cafeteria mashed potatoes — I was still getting the hang of expressing what my actual thoughts were at that point), after a while I started feeling way more engaged in the conversations I was in online. And I realized that I could actually say what I meant and thought when I typed. What’s more, I realized that I had more thoughts than I’d thought I did. Discovering writing as not only a communicative tool, but as a “reality-processing tool” (since sometimes I didn’t even know what I knew until I tried to write it out!) was probably one of the biggest turning points in my entire life.

    Nevertheless, I was never able to use writing as much as I’d have liked to while growing up. People encouraged me to write stories and poetry as creative endeavors, and teachers told me I was a “talented writer” and that I should keep up the good work in that area. But when it came to improving my communication skills, people were always emphasizing speech as primary — I wasn’t encouraged to write to get my thoughts in order or anything, I was basically just told to “talk to more people” and “approach people in conversation” (that didn’t work too well — to me it was like being told, “Oh, of course you can fly! Just stand there and take off, it’s easy!”).

    So…this is getting really long, but the bottom line is that I’ve always struggled to use speech for the full range of communicative purposes people are apparently expected to use it for. When I discovered that text-to-speech software and “talking” keyboards existed a few years ago I was almost terrified by the implications of such things — I knew that I would benefit hugely from such technology, but it felt almost decadent to even consider it.

    I was interested in small, portable computers and word processors for other reasons already (I’d been wanting something to take notes on for years that would have better battery life than a regular laptop), so I knew it was only a matter of time before I acquired some kind of keyboard device. But it took me a relatively long time to get one in part because I was so scared of what might happen if I set it up for text-to-speech, found it useful, but then got pathologized for using it (at which point I’d be forced or coerced to stop using it). I wanted to keep the potential of having it there for as long as possible, I guess, because the idea seemed too good to be true (to the point where I felt like I’d somehow manage to break or sabotage it if I got too close to it, if that makes any sense).

    At this point, I’ve played around with several text-to-speech programs on various computers, and I now have two portable devices (in addition to a regular laptop) capable of producing speech output. I now try to at least have one of these devices with me all the time — occasionally I’ll pull one out and use it for communicative purposes (I find that really handy if I’m spending a lot more time around people than usual.

    Having a non-speech option makes it possible for me to “last” a lot longer in social settings, and to participate long past when I’d usually have “crashed” or “shut down”), and there is definitely an obvious difference in how much more authentic my communications feel to me when I’m typing. It’s like more things connect, and connect a lot faster, when I type than when I try to speak. I can more readily and immediately tell whether my words actually reflect my real thoughts and express what I know when I’m typing.

    If I’m in a situation where only speech is feasible for whatever reason, I tend to feel quite “trapped” and limited — I can consciously and tangibly feel the huge, yawning gap between my levels of understanding of things and my ability to pull out verbalizations that demonstrate and articulate this understanding. And I also find myself resorting to cliches and “stock phrases” and even things that I find personally offensive sometimes, just because of the whole habitual “this phrase-pattern goes with that phrase-pattern” I picked up as a kid.

    So, while I don’t type all the time, typing more often has already benefitted me hugely. As has realizing that no, the fluid-feeling pattern-matchy babbletalk doesn’t actually indicate “communicative speech”. I used to walk around feeling vaguely guilty almost all the time, and like everything was about to crash down around me because I didn’t know what I was saying half the time. Given that, I’d say that I do very well know the experience of being “trapped under spoken words that have nothing to do with [my] personality”. It’s kind of ironic that so many “experts” seem to think getting people to stop using their keyboards, or just generally rely on speech more often, is going to “free” them somehow. For me, it’s been far, far more “freeing” to use less speech. As I see it, why should I try to “rely” more on an old, rusty bike when I can take a high-speed train instead? :)

  8. Oh, and in addition to what I said about speech in my last comment, the stuff we discussed a while back about “getting stuck” still also applies. Even when speech has felt “fluid” to me, there’s been a kind of inertial quality to it that makes it (a) difficult to stop, even when I want to, and (b) eventually painful/exhausting. And I also sometimes have trouble starting speech — I used to have a co-worker who was actually really good at sensing this, and what he’d do would be to start a sentence on the topic he knew I was supposed to be talking about, and then suddenly I’d have much better access to the vocabulary-space associated with that topic.

    The whole subject is really complex/convoluted, and difficult to describe without accidentally leaving stuff out…

  9. e.g., generic complaints about cafeteria mashed potatoes, even though I liked cafeteria mashed potatoes

    I remember complaining about a lot of things that did not actually bother me, for the reason that I heard a lot of complaints about things that did not actually bother me. (Meanwhile I rarely complained about anything that bothered me.)

    I also remember repeating things that contradicted each other at times, and getting responses like “But you liked that”, or “But you couldn’t stand that.”

  10. Anne: how did you get your devices? I’m asking not to pry but I have been thinking about getting something like that…….Like you, I wouldn’t feel comfortable telling others……for fear of being “pathologized” or whatever…..coerced not to use it…….etc. That would of course mean I have to save money for it……

    Amanda: yeah I have done the same…….complained about stuff that wasn’t really irritating after I thought about it……one or more of us has even done that while not in the presence of any other human….sometimes to get spoken word running again in our brain…….

    re: repeating things that contradicted each other: was that self-correction that people didn’t catch on to when they responded? Or not realizing what you had said prior to that? I’m curious because I’ve been in both situations before….

    Athena

  11. It’s kind of ironic that so many “experts” seem to think getting people to stop using their keyboards, or just generally rely on speech more often, is going to “free” them somehow. For me, it’s been far, far more “freeing” to use less speech. As I see it, why should I try to “rely” more on an old, rusty bike when I can take a high-speed train instead? :)

    Yeah.

    That’s generally the response of people who get assistive technology after really needing it for awhile and not having it.

    I was fortunate with typing, in that almost everyone could see an immediate change in not only my communication but my personality (now that I was free to show more of my actual personality). So I didn’t get a whole lot of “Why are you doing that?” sorts of questions.

    I had more problems from other people when using a wheelchair. And I just realized, while typing this, part of why.

    The people who interacted with me regularly before I used a keyboard, got to see a lot of what communication was like for me. Even though they might not have seen all the internal stuff, they could see the difference in my entire communication style immediately, because speech-based communication was how most of us interacted with each other in realtime, even at great distances. So while they might not know all the internal mechanics that were going on, they could see the periods when I couldn’t talk, times when I got frustrated and screamed, times when talking sort of petered out on me, times when I talked but it was really forced out of me in an obvious way, as well as more subtle things like less non-word-based expression and so forth (and quite often my voice was more monotone than my speech synthesizer).

    Most of them did not get to see what my day to day life was like without a wheelchair. They got to visit me for short periods of time, and knew nothing of how I spent the rest of my day. And the people who did see me day-to-day were really happy about the wheelchair.

    Because in the period before I got the wheelchair, I was freezing a lot, I was barely able to get out of the house, and when I did, I ended up often holding up whatever group of people I was with by suddenly stopping. And I was in enough pain that this was limiting my mobility too. But a person coming into my house was not always going to see all of this. They would see me sitting in one spot. They wouldn’t necessarily see that I stayed in that one spot for 12 to 24 hours at a time.

    So, while I experienced the wheelchair as freedom from being nearly housebound, other people sometimes had different opinions. Some people thought I was “giving up,” whatever that’s supposed to mean. It was only when, for instance, my father saw how much more often I could get in his pickup and go places with him, that people started going “Oh, wow, this is better.”

    So I think the difference between my interaction style in speech and typing leapt out at people who interacted with me a lot, far more forcefully than the difference in getting around between walking and (sometimes) using a wheelchair, which was just as big a difference to me, but which didn’t necessarily make things that different for people who just saw me now and then.

    What also helped my family understand what was happening, were the following two articles by Jesse the K (who, much to my surprise, later became a friend):

    I want to live — give me the chair! and How I Learned to Stop Worrying and Love my Wheelchair

    Because those go through the common myths about disability, and then show how a person who really needs a chair is suddenly more functional and active in one, not less.

    …and, although it might fall under “supercrip” a little, being suddenly able to race my dad across a parking lot and win helped with the notion that this wasn’t about “giving up”. ;-)

  12. I really like the line, “But my chair no more confines me than my eyeglasses obstruct my vision.” from the second link.

    And I did the “voicing complaints about things that didn’t actually bother me, but not complaining about things that actually did bother me” thing too when I was growing up — I didn’t have any linguistic context for what was bothering me, but I did have the sense that “complaints” were part of what language was supposed to contain.

    I also sometimes got confused because it was like everyone was *expecting* me to be afraid of (or bothered by) something, so there was this weird cognitive dissonance when I wasn’t scared or bothered by that thing. I remember that nobody would let me watch the Michael Jackson “Thriller” video for a while when I was little, because they kept saying I would be scared. I saw it at some point anyway, though, and wasn’t scared at all. But I still ended up saying I was scared because it was like completing a script. I remember watching the video one day, and not being scared, but feeling really strongly compelled to say I was scared — to the point where I got up out of bed and knocked on my parents’ bedroom door to tell them I was scared.

    Sort of related to that, I also remember feeling for a while like I was supposed to be spelling words wrong all the time, because all the kids my age in books and on TV seemed to spell words wrong. And I remember thinking there was possibly something “wrong” with me because I knew how to spell! So sometimes I would write and spell words wrong on purpose, just to prove to myself that I could do it.

    It’s so weird to think back to what it was like in my head back then with regard to language stuff…

  13. Hi Amanda…
    I’m so glad to see you’re on here. I somehow have missed your last several posts, and I was getting worried about you! I thought that I had read that you weren’t feeling well….and I was worrying for you. But that is not the case, so I am glad! (Sorry to interrupt the line of conversation here!)

  14. “I also sometimes got confused because it was like everyone was *expecting* me to be afraid of (or bothered by) something, so there was this weird cognitive dissonance when I wasn’t scared or bothered by that thing.”

    I was like that with sexual attraction. At grade 5, I was told (along with everyone else) about puberty and the changes it would bring, and they said something like ‘you will start having crushes on the opposite gender’ (they didn’t even recognize gay people, and this was around 1999). It didn’t occur to me that it could be any different than that – though I knew about gay people at least, I didn’t even think of the possibility that I might be gay. I just thought ‘I will have crushes now that I’m entering puberty’. And with some boys (and even more girls, but I ignored that) I asthetically liked their appearance, or thought they were interesting, or liked them as people, and I assumed that must be a crush, and acted the way I’d read about people acting in books when they had crushes. It probably creeped the boys out.

  15. Amanda,

    I can understand how your using speech to communicate made you really stressed out and that staring to use a keyboard was liberating and relaxing; but I’m surprised that it changed your perceivable personality so much. I think you are argumentative at times, and you know the extent to which you are still (if at all) “stressy, anxious, scattered, over-intense, rude, inconsiderate, unemotional, overemotional, boring, crazy, argumentative, black-and-white”. And wasn’t your turning “more flexible, sensitive, perceptive, empathetic” also part of your becoming a more mature person?

    When you used speech you wanted to communicate, even though it was really stressful to speak. When I was a child I spoke little – my mother said that she couldn’t get a word out of me, and teachers remarked how quiet I was in class – but that was because I didn’t want to communicate. Though to a small extent that was because I stammered and/or stuttered, that wasn’t the fundamental reason. Though I much prefer typing to speaking, to me communication, in whatever medium, is not easy and natural because it means going out of myself, and I am most truly myself when I live within myself.

  16. For people who have always experienced speech and communication as part of the same process, I can see where it would be very easy to have difficulty separating the two. Until I thought of that, I was having a really hard time imagining where you came up with so many inaccurate assumptions about the way my life worked, as well as how much I did or did not speak.

    For someone whose main trouble with speech is because it brings them outside of themselves, it might be hard to imagine the sort of receptive language problems I grew up with, and the way that I developed speech as a pattern before I understood a word of language, let alone its purpose. I would suggest reviewing the things that I and others (Anne C., possibly zilari) have written on this blog and some other ones about figuring out conversations as patterns only, and regarding those patterns as puzzles to be solved rather than intentional communication from within someone’s mind to someone else’s. Those of us who grew up that way have a very different experience of both language and communication than people who grew up, like you, having a somewhat more typical understanding of both but being either reluctant or unable to use them. Donna Williams talks about the difference between slow or reluctant but existent expressive and receptive speech, and people who had to “tame dysfunctional language,” and I’m definitely in the second category of people: My development of expressive and receptive spoken and written language takes a radically different trajectory than most people’s does, both in quantity and in quality.

    Even at a time when I had a strong desire to communicate, I did not usually enact that desire by talking. I might do some combination of singing, music, body language (not recognizable to most people), and the placement of objects (whether books or other ones) around me, however. Only one person ever picked up on the meaning of all that, and she comments on this blog from time to time. She and I also used to have phone conversations where I did lose speech in the middle, but we would either just sit there quietly, or we would begin tapping out prime numbers to each other with our fingers, trying to see how high we could go.

    For a long time, I did not regard myself in childhood as being all that quiet. Then I kept hearing people describing me in that manner. My mother describes me as not starting a lot of verbal conversations in childhood, and only talking once someone else talked to me. My neighbors across the street were talking to me (as an adult) about my lack of diagnosis as a child (they had a child who was diagnosed with something relatively early), and they told me “It was because you were so quiet all the time. The squeaky wheel gets the grease.” While I know that I screamed and cried at times (which isn’t quiet), I think they meant that I didn’t talk to people very often. I also found a legal paper at one point (collected by a district attorney for an abuse case where charges were never pressed, years earlier) in which, at the time in my life when I was more talkative and social than any other, I was described as quiet and not very social, in fact so much so that they had trouble finding witnesses of the abuse. And my mother says that at a certain point in my life, I would call her up and then just sit there on the phone without talking, but not let her hang up.

    Finding all those things out was one of the first ways I began to puzzle out the lines between what my experience of the world was, and what others saw of me. I experienced the world as loud, noisy, and overloading, so I had these time periods in my life classified as loud. Other people experienced me as quiet, and that was confusing to me.

    I know that at times in my life I could talk for relatively long periods of time, but that was more a case of recitation and momentum than a case of having something in my mind that I wanted to communicate for others — just as I have trouble starting things, I also often have trouble stopping them.

    I am told that I still use a lot of the same word-generation patterns that I did at that time, I just use them for what is inside my head, rather than as a complex puzzle I am attempting to solve. And just as speech happening was not happening because I wanted it to, my lack of speech (when it happened) was not happening because I just didn’t feel like talking. I couldn’t generally start conversations (still have lots of trouble doing that) whether I wanted to or not (although I did figure out a few ways a tiny bit of the time), and when I had periods of lacking speech, I could not speak, whether I wanted to or not.

    I think that what you and I call argumentative are two different things. Here is what I was referring to:

    There was a time period when I would argue with people, not because I thought they were wrong, but because it was part of a learned pattern of speech generation. I could come up with plausible-sounding reasons they were wrong, regardless of whether I thought they were wrong or not. Even if they changed in mid-conversation to agreement with me, I would simply switch sides and argue the other side. This was completely triggered, not a voluntary behavior, and I would watch it happening and be unable to stop it. I consider that an extremely argumentative communication style, despite the fact that it wasn’t all that voluntary.

    On the other hand, at the moment there is something different that happens that could be considered argumentative, although I don’t really consider it to be so. It is easier for me to say something in correcting an inaccuracy in what someone else says, than it is for me to come up with the same thing to say out of the blue. This is an extension of my difficulty initiating just about everything: Thought, action, language, conversation, interaction, memory, etc. The same difficulties in initiating things that are why I was in fact pretty quiet as a child.

    I have to have a trigger in order to set off a pattern of memory and translation of that memory into words, and one very good trigger is being told the opposite of something that is true. (Far better trigger than asking me a question, which just sends me spinning into frustration if I try to engage with it.) Because of this, it is far easier for me to say something in reaction to something I have read somewhere that disagrees wtih me, than to just come up with something to say on my own.

    I realized somewhere along the line that this was why some people considered me argumentative (which seemed a strange, out of the blue accusation). But it is very different than arguing for its own sake whether I believe something or not. The things I say that are triggered by the false description are the more accurate description, as in they are things that exist inside my head, rather than things that I am just saying because it’s part of some programmed language routine in my brain somewhere. I do not consider myself currently to be all that argumentative, because I no longer argue points just to argue points regardless of whether I believe them. I just use inaccurate statements (such as many in your comment that I am using for this purpose right now) to jumpstart language into describing the more accurate ones.

    As to the other personality traits, they did indeed decrease. I do have a particular personality, and always have had that particular personality. Language makes it difficult for me to show that personality at its fullest, and speech makes it impossible. The difficulties of language and (even more so) speech, and the force required to produce them, can masquerade as all the traits that would seem to suddenly disappear at times when I was not using speech. Although any sort of language (including comprehending language) is going to induce some false appearance of those traits in me, the leap from speech to typing was a great enough one for those traits to appear suddenly and abruptly reduced.

    Keep in mind, also, that I am talking about offline everyday-conversational communication here. Martha Leary commented when I met her, that what she sees is that when I type to produce language, I am focused and not necessarily very expressive, and then the moment I stop typing and the words are being spoken by my communication device, my body suddenly lights up with a lot more physical expressiveness (although still not standard degrees or kinds of it, from what I’ve been told). The act of producing and understanding language at all hinders the expression of my natural personality traits, which is why I so value the friendships I have that do not require much conversation. But the act of producing speech, which is even harder than just ordinary language, doesn’t just hinder them, it erases all sign of them.

    So the underlying personality I showed was not a sign of maturation, it was a sign of that personality being less hindered by the least effective mode of communication possible. I had always had that personality when alone, or when not hindered (or less hindered) by speech and/or language. It was just a matter of the difficulty of doing other things, distorting or erasing all impression of what I was actually like.

    Very few people up to that point (I can count two or three humans and several cats) knew me very well at all, because their impression of who I was, was not just the suppression of my natural personality traits, but also the addition of the techniques I had learned in the land of speech-as-puzzle-to-solve. Imagine if instead of using speech to say something that was in your head, you primarily used it because it was part of a learned pattern of something you were required to do, something like schoolwork where you don’t perceive any choice involved or any other possible way things could be. There seem to be some things required of you, as in schoolwork, that don’t take who you are into account. And you do it the same way most people (especially people who had difficulty with schoolwork) would do schoolwork, as a difficult and exhausting but mandatory process that doesn’t reflect who you are at all, but rather what work the teachers seem to want to see filled in on their worksheets. That’s how I handled most speech, so it not only obscured my personality, but gave the impression of a different sort of personality than the one I had, just as would happen if most people took schoolwork as the primary indication of any given child’s personality, particularly a child who finds schoolwork difficult but plugs away at it anyway.

    So when I began typing, what happened was that my natural personality was less suppressed, and the overlays of false assumptions of my personality based on how I handled speech, fell away. So it looked like a pretty drastic and immediate change. Since I could speak some of the day and not the rest of the day, this change happened back and forth several times a day and was extremely obvious when it occurred. I suspect if people had not known me as well as some of them did know me, they’d have thought I was two entirely different people. So for me, speech, even at its absolute best (I think the peak of my superficial speech was in my early teens or just before, and the peak of my actual expressiveness of thought in speech occurred towards the end of my ability to use it), was a barrier to communication, not a means of communication.

    I hope that makes things clearer. I don’t normally know you as someone who assumes this much about a person, so I’m guessing the assumptions are rooted in your own experiences of speech, language, and communication, which differ greatly from mine.

  17. Imagine if instead of using speech to say something that was in your head, you primarily used it because it was part of a learned pattern of something you were required to do, something like schoolwork where you don’t perceive any choice involved or any other possible way things could be.

    That’s pretty much exactly how I experienced speech growing up. And it didn’t even occur to me to question this impression when I was younger — I didn’t know what communication was supposed to consist of and feel like, so I didn’t have any basis for comparison. Plus, the people around me generally had some theory at the ready to explain my “difficulties” — the ones I got a lot were that I was “rude”, “anxious”, or “attention-seeking”, and though these didn’t really reflect how I actually felt, I didn’t have the facility to argue.

    So for years I was basically “stuck” having a lot of communication problems that were directly related to speech difficulties I didn’t even realize I had, but that were being explained away constantly as personality flaws or emotional problems.

    And when you try to treat a functional difference as if it’s a personality flaw or emotional problem, you’re likely to produce a whole lot of frustration and cognitive dissonance in the process. I had a pervasive sense of cognitive dissonance for years because of how I knew certain things about myself, but couldn’t readily express them, and got told things about me that weren’t true, but that I couldn’t verbally supplant with more accurate things.

    It wasn’t until I started trying strategies that were totally different from most of the advice I’d received over the years that things actually started getting better for me.

    Maybe for a lot of people, their understanding of a lot of things is inextricably bound up with language in such a way that the language “contains” their understanding (meaning that when they speak, they are really and truly communicating what they know), but for me, understanding is a totally separate thing.

  18. Yeah, exactly what Anne said.

    There is no way of questioning it if you don’t know anything other than that way of doing things. I do remember loathing speech for as long as I can remember trying to use it. If I’d had a way of questioning what was going on, my communication skills would have had to have been far better than they actually were.

    What I had for a long time was a growing sense that almost nobody knew who I was.

    The problem is that this is usually taken in a different and far more metaphorical way than I mean it in. I don’t mean some sort of existential angst about the separation of one person from another, and the inability to really “know” anyone (which may have existed too at points, as it seems to for almost every teenager, but wasn’t the bulk of my problem).

    I mean specifically that even most people who’d consider themselves close to me, did not know some of my most basic likes and dislikes. They did not know how I felt about just about anything. And all of this not in terms of intensity or anything, just in terms of facts people couldn’t know about me because of the way speech developed for me — a hodge-podge that only sometimes even at the best times, reflected anything about the reality of what I was experiencing.

    And people would think I cared about subjects that I didn’t care about. That I had opinions that were not mine. And so forth. Not everything, because I was able to show my interest in some ways, and did have limited abilities to sometimes say or write things pertaining to what I meant. But there was so much noise in the signal that this wasn’t particularly accurate unless you could read me better than most people did.

    And I had no way at all of correcting this. I had no method of walking up to someone and telling them what I was actually thinking or feeling any any given time, although I did have plenty of stock phrases for the purpose.

    I guess I still have some limitations in that area, they’re just not as pronounced. I have far less noise now to override the signal, and I have ways of shutting off the bits of the automatic noise-generator that still function (including beginning to get really strict about how, when, and why I will and will not answer questions).

    But what I do still have is ability to talk about a limited number of subjects compared to the scope of what I am able to think about. My best friend once told me that she thinks I have a lot of detailed knowledge somewhere in my brain, but that I have very bad ability to access it.

    But that if someone were somehow able to look inside my head they would see something very different than what makes it out of my fingers. They would see something like huge pockets of minutely detailed information on a huge variety of subjects. And then they would see that only one or two parts of those pockets of information is really able to be accessed.

    I don’t know why it is, but I do have a couple of friends who seem to understand this about me. They hold entire conversations with me about other topics that I never talk about on my blog and would never be able to. Or we interact in other ways pertaining to other things. And somehow they register my understanding, and take it seriously.

    But most of the time I have no way to indicate this understanding. I don’t know how I indicate it with these few friends, either.

    So things have improved, but there are still elements of before, there are large portions of what I think about that there is no way to say. But there’s less interference.

    And I know that a lot of people really do have one particular focused area of knowledge. But I think some of us, like me, have more areas of knowledge, but one particular focused area of communication of and/or access to that knowledge at any point in time, and possibly one particular focused area of obvious learning at one point in time. I’ve noticed that I can’t control what that area is, either, and that the one I have access to words for, and the one I am currently learning, are not always the same one.

    And I do think, strongly, that there’s some kind of ‘many ways of being autistic’ thing going on here that’s causing some of the communication trouble between me and Philip on this thread, but I doubt it’s a division that has a name yet.

  19. Amanda,

    Thank you for your detailed and richly textured explanation. It has made things clearer.

    I didn’t intend to make any assumptions about you and didn’t think I was doing so. My observations about you were the result of thoughtful consideration of what you had written earlier in this blog entry.

    By your being argumentative I meant that you give long and detailed replies to posts, on blogs or discussion forums, with which you strongly disagree because they are opposed to your ethical values and/or they are inaccurate. I didn’t mean that you like arguing for its own sake. Maybe argumentative was the wrong word.

    One trouble I have with language – in whatever medium – is that I’m afraid that I might, without meaning to, communicate something ‘wrong’ which would offend the other person. That is not meant as a criticism of your reply to my previous comment. I don’t know if you are taking it as a criticism. Therefore I think that it is better for me to keep quiet.

    This sentence: “The act of producing and understanding language at all hinders the expression of my natural personality traits, which is why I value the friendships I have that do not require much conversation”, strongly resonates with me. My true personality is deeper than language which expresses it only imperfectly.

  20. Oh, and, I’m also super-overloaded at the moment. Because I’m getting seemingly a minimum of four staff a day right now. And the amount of time I have on my own is not fully compensating for it. I’m hoping I’ll either get desensitized, or get the staff people up to speed on what to do enough that I won’t have to keep landing in a semi-supervisory role that I’m neither equipped for nor paid for.

  21. Oh, and I just read over what I said. When I say “when I began typing,” I’m referring to, when I had a portable keyboard (originally an AlphaSmart, then a Link, then when the Link was damaged and I could neither afford the repairs nor figure out how to get Medicaid to pay for them, a series of Liberators that I got for under $20 each on eBay, all of which had serious malfunctions in them, some of which had to be wired together by Joel in order for me to use them properly, and all of which are now completely dead) that I used for purposes of direct communication to people in my environment. I’m not referring to when I originally learned to touch-type, which was about a decade earlier, nor to typing that wasn’t for the purpose of everyday in-person communication.

  22. And replying to me is not a problem. Length of reply on my part is not indication of lack of desire for reply on anyone else’s part.

    Edited to add: Just after I typed this reply, I saw on a public discussion group, a line that went, “People often misinterpret Aspie rebuttals and explanations (normally detailed and thoughtful) as defensiveness.” That sounds very accurate for how I’m interpreted with my tendency to go on and on. (Some of which is because I feel like I’m circling a topic without being able to say what I mean, and that if I just circle it long enough, in enough detail, people will see where I’m pointing. And sometimes the more exhausted I get the longer and more repetitive I get.)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s