Babble and nonsense and typing and speech.

Standard

There are things that I don’t really want — would never truly wish for — but various nuisances make me wish they could change. This kind of thinking is incredibly narrow in scope, and does not take into account the real causes of the problem. It’s a kind of thinking I see all the time in other people, but so often presented without questioning it, without pointing out the errors in this kind of thinking, without pointing out the damage it does to present it as if it’s just fact.

I sometimes wish I could talk (note: talk here means in any functional sense to use speech for communication on a regular basis — it does not mean, make word-noises with my mouth). Not because I think there’s anything superior about talking. Not even because of most of the everyday nuisances of communication equipment usage. No, it’s a different nuisance.

People react to my writing differently than they react to the writing of speaking people. They act like what I have to say is more profound because I type to communicate — even though, if I could speak, I would be saying the exact same things. They also question whether I am really the one writing things more often, which is not something I see a lot directed at speaking people (even when they are using a form of echolalia less communicative than what I am doing in writing, and may in fact be repeating someone else’s words and concepts).

They also seem to assume an entire history that isn’t mine (usually of someone who never talked and then started using FC and then started typing independently), and then if I correct them they want the entire complex speech history explained in detail. Even if I’m way too tired to do it justice. (And if I’m too tired to do it justice, then I have to gloss over and oversimplify things in ways that they blame me for later when they find out that it was a glossed-over oversimplification.) And even if my life story isn’t really anyone’s business.

They also seem to assume that I am vastly, vastly different from people who speak better than I do (or have enough tricks set up to look like they speak well even if they’re just muttering a word now and then to people). Zilari and I have a lot in common even in terms of speech and communication history, but I bet people would put us in two totally distinct categories because we branched off in slightly different directions at one point with regard to the prioritizing of speech vs. writing in our brains.

Here is a big part of why I don’t understand or believe the whole thing about speech meaning you’re better at doing things:

If I were to speak, here is what my life would be like:

I would every few hours hit a level of shutdown that I now normally only experience during stressful trips to conferences and other unfamiliar and busy locations. I would freeze in place far more often than I do now. My mind would be filled with a constant painful buzzing haze that I could not get to go away no matter what I did. This would affect my ability to understand and react to my environment in an efficient (for me) way. I would be totally incapable of learning to do many of the things I have learned recently, and even if I learned them, I would be unable to perform them. I would not be baking orange bow knot rolls for fun, I would not be baking anything at all, I would in fact be routinely struggling with the physical act of getting food into my mouth. I would throw loud screaming fits on a regular basis (something I’ve managed to stop for the most part), I would still head-bang to the degree I used to (once per second for hours, rather than the occasional thing it is today), I would possibly even do violent things (something that is all but gone). I would walk into walls, walk into the street, and all those sorts of things, far more often. I would fail to notice many key aspects of what was around me.

And all the same people who come to all these weird conclusions about me because I don’t speak, would then decide that I was something they called “high-functioning” because even if all other abilities went down the tubes at least I’d be speaking.

And that is the position that all kinds of speaking auties are in right now.

By contrast, if my brain were to cut out typing (and all pre-typing activities) as well as speech (something it’s shown itself quite capable of doing in the short-term), many other skills would increase greatly. Typing may not be the extreme of a memory-hog as speech is, and may be far more comfortable and useful, but it’s still pretty processing-intensive. If I were to cut out language and the idea-blocks that go with it, there are all kinds of things I could do (and do do, when that happens temporarily).

And yet you’d probably call me lower-functioning because I wouldn’t even type at that point.

I don’t understand this. This is foreign to my brain. If I am not having to process words and the majority of abstract concepts, there are all kinds of things I can do. I can read the social mood of an entire room and the pattern of each person’s part in shaping it. I can sense dangerous situations and figure out what needs to be done to avoid them. I can feel my way through all kinds of survival-related tasks. I can draw on a vast reservoir of instinct and pattern-matching to navigate situations that words and abstract concept crap won’t let me do. (And I have done all these things, in situations where other people saw me as not typing and not responding to them and started doing things like waving their hands in my face.)

So I see a bizarre pattern here: The more standard forms of language and speech we use, the less many of us can do, but the “higher-functioning” everyone will claim we are (and will attribute all kinds of skills to us that don’t exist). The idea that speech and language are both processing-intensive tasks that detract from our ability to do other things doesn’t cross people’s minds. The fact that for some people the more speech they use the more assistance they will need for other things, doesn’t cross people’s minds either.

I type because communication in language is important for various purposes (both personal and more general) in my life, and it is the absolute most efficient way I have to communicate, and other methods are not feasible. It does not make me a different species of autistic person from people who speak, or from people who don’t speak or type. It does not determine what sort of autistic person I am as compared to others (other things determine that). It does have a negative effect on some skills, but that’s something I’m grudgingly willing to deal with given the consequences of not typing (although sometimes I wish there was some other setup available where language was not necessary at all). It certainly does not make me either more or less worth listening to than anyone else, and it does not make my ability to do day to day living skills automatically worse than people who speak (in fact for some of them speech might render them less capable of some things than I am, the same way it would do for me if I could still do it). It does not make me amazing (from a non-disabled “inspiration” perspective).

It seems though that whether you type or speak, if you’re autistic, people will stereotype you into one form of oblivion or another. Unfortunately that stereotyping can be a matter of life and death at times, so it’s not all that trivial.

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.

39 responses »

  1. You’re right about assumptions people make regarding talking and not talking. If I tell people that I do communicate through talking then they presume I am only “mild”, or “borderline” and that I have few problems, when the reality is not the case.

  2. “My mind would be filled with a constant painful buzzing haze that I could not get to go away no matter what I did.”

    Oddly enough, there may be some truth to what you say.

    Because, yes … even the SLIGHTEST autistic tendencies / thought patterns combined with a largely functional speech area leads can lead to yet another terribly delightful condition – BIPOLAR!

  3. Axinar, i think it’s kind of patronizing of you to say that there “may be some truth” in someone’s own prediction of the behavior of their own brain that they have been observing for 20-odd years.

    She somewhat speculates (not without reason) that similar things could be true for other autistics, but mainly she is extrapolating existing info about her own self, and i think that when a person really does observe their own mind and body with a great deal of reflection, we should generally trust them on that.

  4. Not only that, but I don’t see how the overload I describe relates to bipolar. (Or why only speaking autistic people would be prone to that.)

    I can’t figure out the “may be some truth” either — because I’m describing a real life experience that has already happened, not imagining how speech might feel as someone who’s never done it.

  5. yeah and it only makes sense that speech would do to you something like what it used to do, or at least like what it used to do to you after the “shuffling” of capacities that you told about…
    i didn’t understand the bipolar part so i skipped that. although i am sure there are some things in common, and some overlaps, between autism and bipolar… the causation part was what i didn’t understand.

  6. “If I were to speak …”

    In other words, “Hypothetically, were I to speak …”

    Although she may have meant, “I have spoken in the past and this is what has happened,” but that’s not how she said it.

    “My mind would be filled with a constant painful buzzing haze that I could not get to go away no matter what I did.”

    “would”

    Not “has been in the past when I have done this”.

    Now, that being the case –

    Yes, it may very well be the case that if you were to speak your mind would be filled with a constant painful buzzing haze as it has certainly been my observation that certain members of my family prone to what would ordinarily be considered “mild” autistic behavior certainly are stricken with the “buzzing brain”.

    And, yes, this DOES often manifest itself as, if not actually full blown schizotypal “hearing voices”, certainly as “insistent thoughts” that can certainly disrupt sleep for DAYS on end – hence – bipolar symptoms.

    Did that make any sense at all there?

  7. Axinar, the reason I wasn’t explicit about that is because I’d mentioned it in the post I wrote right before that one and I figured repeating it would be annoying. I am also not sure that we conceptualize the experiences we’re talking about in enough of a similar way to be sure we’re talking about the same things, let alone what we think about them. I really have trouble making the leap from overload-induced insomnia and/or overload-induced overdrive mode to mania. It’s only a superficial resemblance as far as I can tell (having experienced only one of the two states, unless you count what prednisone did to me (which did not remotely resemble overload, but strongly resembled mania, which is a known side-effect), but also having known plenty people who experienced one or the other or both — they really are quite different underneath).

  8. I thought that ballastexistenz was telling us that she knew certain things happen when she speaks, or tries to speak, BECAUSE she had the experiences of these happening in the past and knows, therefore, that if she attempts to speak now, the same things will happen. I don’t clarify saying “I know I’ll be cold if I don’t put a coat on when I go outside because I’ve been cold in the past when I’ve gone outside without a coat”, I just say “It’s cold out, I’d best put a coat on.” Although I do have a lovely inner central heating that means I can warm up pretty quickly :). Clarification that a person is aware of what their bodies and minds can and can’t do should not have to rely on statements that a situation has happened in the past. If a person explains they can – or cannot do something and that they are aware of what happens when they attempt to do that something then that should be sufficient.

  9. I have never met you, but have watched your videos and read your blog. I once wrote and told you how amazing I thought you were…your blog and videos. I was thinking after reading this last post, WHY do I think your writing is so brilliant? Well, I am sure it has to do with you being autistic and the ole ‘oh look at what is locked away inside’ stuff. But no, that is just part of it. You have a distant ryhthmn in your writing that is very interesting to me and fun to read. Very poetic. Have you thought about publishing any of this???? More and more people are reading your work out in the world. At my work we have discussed your blog over lunch many times. Not everyone has the ability to do this…to reach people like you are. You do not give yourself the credit you deserve about being an amazing writer.

  10. I am sure I am probably a good writer — because of other people’s reactions to my work when they don’t know who I am. I do not know if I am an amazing writer, though, one way or the other, nor do I know what particular part of “good” I fall into, in part because it is hard to tell in the majority of responses to my writing which parts of the amazement are coming from the writing itself and which parts are coming from the contrast of the writing with what they expect. I reserve judgment in part because the messages are so mixed. I have encountered enough amazement for writing simple sentences or simple words, even, that I know I am not amiss in saying that people often think so for the wrong reasons.

  11. “I can read the social mood of an entire room and the pattern of each person’s part in shaping it. I can sense dangerous situations and figure out what needs to be done to avoid them. I can feel my way through all kinds of survival-related tasks.”

    You’ve said elsewhere that you thought you could pass for normal when there is no way you could. And you’ve said that you don’t understand why people respond to your out-of-the-normal appearance. And you’ve said you could walk out and not be able to comprehend staying out of traffic. So how can you say that you can read social moods and feel your way through survival-related tasks?

  12. Because in certain situations (with language and several other things entirely cut out at that point) I’ve been able to do so. Abilities are not continuous, they fluctuate according to, among other things, availability. I am totally socially clueless if I am forced to deal with language, which I think is the fallacy of testing autistic people on our social skills using language. Even Temple Grandin has said she can read tone of voice provided she doesn’t have to hear what the words mean — I can read social moods (underlying social moods, not “presented” social moods) provided that I cut out certain other kinds of processing that would let me express those moods in realtime. (And I can do so to a degree that has meant that NTs have sometimes relied on me to read certain aspects of situations for them, after the fact. Throw me in a room with the language turned off and I can tell a lot of underlying things that non-autistic people can’t normally read.)

    And keep in mind that’s with no symbols, no language, no comprehension of who anyone is specifically, only their positions in the room and the pattern going around the room in movement and tone.

    Which is part of the point — we are stereotyped into oblivion, to the point where we hear things like “How can you possibly X at one point, if you can’t Y at another point?”

  13. Well, I like your writing because it is refreshingly easy to understand, but I am sure that probably has something to do with the fact that you and I process language somewhat similarly. But I think that the answer to the question of whether a given piece of writing is “good” depends on what the writer is trying to accomplish. I know that there are particular writing styles that many people seem to be impressed by that I honestly can’t make a whole lot of sense of.

    Also, regarding the speech thing: I think that what has happened, in response to both involuntary neural optimization and intentional life-planning I’ve attempted, is that I now utilize speech for specific purposes but don’t consider it a “primary communicative mode”. If someone really wants to get to know me, they’re better off using text.

    But I can use speech for utilitarian communication (e.g., “I would like to order a large pizza”), for reciting monologues on particular subjects I know a lot about, and I also muddle through in informal settings if I happen to be spending time with other people (though I’ve been told that my speech is very unmodulated, and I have difficulty with conversational timing). If I record myself talking I am generally reading from a pre-written script, which is a lot easier than coming up with coherent language spontaneously. At any rate, it’s a very complicated thing (speaking) and definitely not something I do without carefully planning and thinking about it, which means that “speech management” tends to be very very energy-intensive for me. It’s definitely one of the first things, if not the first thing, to stop working when I get overloaded.

  14. Just for your interest, if it is of any interest, when I started reading this blog, it was a little while before what I was reading mentioned that you don’t talk. I can’t say whether I make any judgement of your work based on that – I read blogs and have correspondences with others who don’t talk or have profound speech impairments for completely different reasons, like CP or Deafness. Most of my relationships are text-based in any case because of my own impairment and the tremendous amount of energy face-to-face communication consumes for me, once again, for a different reason.

    However, you are a very good writer – you are one of the very strongest bloggers who write about disability issues. You are extraordinarily sharp and articulate, not for an autistic person or for a non-verbal person, but for person. And often the things you say are actually quite profound. I have learnt a great deal here.

    So whilst I realise there are many other points you are making here, I think you do a disservice to yourself to assume that the praise you receive would not be given if you could speak. Of course, you’ve written before that some meet the combination of your lack of speech and your writing with awe and wonder (or disbelief), but many of us don’t. We admire you for what you can do, independently what you can’t. I honestly think we do.

  15. And I honestly think that if you and the other person understood what I was talking about, you wouldn’t be saying I was selling myself short or doing a disservice to myself.

    Basically if you’re not the one doing this, I’m not talking about you, and I am starting to find these responses very condescending.

    Do you get told how incredibly, incredibly, amazingly intelligent you are for being able to type the word ‘legible’ (in order to say that your handwriting isn’t very)?

    Do you get told you should write a book after you type little more than your name to someone who’s never read your writing before and knows nothing about your life?

    Do you hear awed whispers of “amazing” crop up around you even at disability-related events if you do so much as type anything (and I’m talking ordinary, everyday sentences here) around people who previously didn’t know you could type, and do these whispers start before you’ve finished the sentences?

    Have you ever had your writing or other work specifically described as particularly amazing because of how your speech works?

    Because these things happen to me all the time. If you’re not doing it, I’m not talking about you, but it seems like the proper response would be to understand what I am talking about rather than try to insist that I’m just putting myself down or something else ridiculous like that when I actually try to talk to you about everyday patronization.

    Would you like being told, when you talk about the sort of people who pat you on the head and call you amazing and heroic for going to the grocery store in a wheelchair (or whatever your equivalent experience is, I know most disabled people have one), that you really are an amazing hero to the disability rights movement and therefore are doing a disservice to yourself if you actually try to talk about being patronized?

    I have watched people’s responses to the writing of speaking and non-speaking autistic people for years. I know the pattern I’m talking about, it does not happen only to me or only to people whose writing is particularly eloquent even, and it does exist and is a problem. I have even had people state to me that writing by non-speaking autistic people is automatically more profound or more spiritual than that by speaking autistic people. I have watched people’s responses to my writing — the same writing, mind you — change over time as I spoke less frequently. I have watched autistic people having said something for years or verging on decades, and only get listened to when a non-speaking autistic person (read a “real” autistic person, in a lot of people’s eyes) said the exact same things (some of which were influenced by the writing of speaking autistic people). If you’ve never come across this particular stratification, be glad, but don’t try to claim that it doesn’t exist or isn’t at play when dealing with any non-speaking autistic person who writes (and just because my writing is good doesn’t mean that some people aren’t reacting to it for those reasons — a person can be right for the wrong reasons).

    It seems really weird to focus on one sentence of my post, which describes a real phenomenon, by trying to tell me it doesn’t actually exist or isn’t actually widespread (it does and it is). It’s not like I was responding to every single positive thing a person could say about what I write, even. I was actually responding to some very specific responses — and very common ones — that you might not even have seen. But they do exist — and I wish people would leave it at that.

    It’s sort of like, it didn’t matter whether my Asian-American classmates in school really were very intelligent (or really good at violin, etc), they still found it irritating, racist, and patronizing to be constantly assumed so before anyone knew whether they were or not.

  16. What’s really strange to me is how people generally treat expressive speech, rote-speech, blurt, *and muteness as if they were equivalently meaningful, and equivalently intentional. (If one happens to be at the other ‘end’ of the ‘spectrum’, I suppose that becomes equivalently lacking in intent.) Why anyone should judge typing as making someone less functional than speaking beats me, except perhaps that ‘functional = ‘like the person doing the assessment’ and most of *them speak, and have secretaries to type for them.

    In fact, ‘functioning’ looks much like an artefact of prejudice: first impressions, refined into the quarter of an expensive medical or para-medical hour, which is for some reason considered adequate to ‘assess’ all the complexities of a person and a life, and in which communication (done the ‘right’ way or not) is almost the only available means of proving functionality or otherwise.

    Re. your writing: you articulate what isn’t usually articulated, or for me within leagues of being articulable, you have passion behind what you write, you’ve clarity in how you express. ‘Amazing’ needn’t *always* mean you’ve just stood up on your hind flippers and balanced a ball on your nose.

    Likewise, if you’re ‘more worth listening to than anyone else’ (or at any rate a lot of people else), it’s because there aren’t many people in a position to say with authority much of what you do say, not because you’re a lusus naturae.

  17. Please read my previous reply on this thread over again.

    I’m not sure if it’s crossed anyone’s mind at all that this blog is not the only place that I communicate with people, that regulars here are probably not who I’m talking about, but that the people who I’m talking about, who I do encounter on a regular basis (pretty much anytime I go anywhere at all, not to mention who write responses to my writing explicitly indicating their amazement that a person like me can write anything at all) far outnumber regular commenters on my blog.

    I mean — seriously — how many of you think that you have to not fit a stereotype to be harmed by ableist stereotyping? Because a lot of you are doing the equivalent of “Well you fit the stereotype therefore you’re not actually being stereotyped,” even when all the evidence points to the fact that stereotyping is in fact taking place. It doesn’t work like that, and I really wish you’d stop trying to convince me that it does, and further that I’m harming myself in some way by pointing out reality.

    I guarantee you I could go somewhere — right now — online. I could make a blogging account for myself containing somewhere the information that I am autistic and can’t speak. Nobody would know who I was. And I could say nearly anything, no matter how content-free or poorly worded, and get a fair number of people calling me amazing, profound, a good writer, etc. (No, I don’t recommend actually trying this.) It doesn’t matter whether I actually am any of those things or not and if you think it matters you’re missing the point.

  18. Oops. So that’s how long it took me to turn thought-soup into words… Had I read your response to the Goldfish, I might have held my peace.

    I don’t pretend to understand the performing seal thing (only that it’s how I think of chunks of my life, when I’m having to over-perform what I really can do, wherefore it was what came to mind, and that people *will tell me how ‘intelligent’ I am, all too often as a sort of consolation prize for being useless), and just how insulting on how many levels… Maybe that’s a large part of the trouble: it’s hard work simultaneously to see you as a person and *enough as if you were only a performing seal to appreciate your position.

  19. it’s hard work simultaneously to see you as a person and *enough as if you were only a performing seal to appreciate your position.

    That would actually make sense.

    Apologies for getting a bit testy on this thread, I’m just used to encountering people who are in the performing-seal mindset, and I find it surprising when people really don’t get that that’s who I’m talking about. Most people who reply here do seem to take me seriously as a writer, but lots of people don’t, and most of the people I encounter in everyday life aren’t the ones replying here.

  20. My apologies Amanda; I realise how that may have wound you up. Really did not mean to detract from, diminish or dismiss (can’t decide on the right word) your experiences. Of course, it is difficult for me to realise just to what a great extent this takes place.

    However, one possible effect of what you describe is that you might have come to believe that because this compliment is often misguided, it is never genuine and you might not actually realise what you’ve got. In the same way, a person who is frequently told they are brave as a wheelchair-user might not realise when someone is telling them they are brave because of a situation they have faced with genuine courage – courage not required for leaving the house in a wheelchair.

    This was the reason that single remark concerned me, because that’s how I read it – or misread it. Condescending to anyone is really something I would wish to avoid, so I am sorry my comment came across like that.

  21. I am sorry,too. There is so much that I don’t understand. Reading this blog helps me shift my mindset and see things about people, myself and my attitudes that I did not know. It helps me grow as a person. That is why I like reading your work. You tell people when they don’t get it in a way that is straightforward. I like that.

  22. I’m really interested in what you said about Larry Bissonnette’s speech and that whole phenomenon.

    I’ve had good communicative speech since early childhood (minus some trouble with pronunciation and audibility), but I can still say things in writing that I can’t in speech, or can’t til I’ve said them in writing first. It’s like writing connects to a kind of quiet real intention that speaking does not or does not easily connect to. Writing feels like a vast still landscape, and noting something quietly within that landscape; a letting see, a letting emerge; naming without meddling.

    Speech is nice sometimes too, because there’s a warm-bloodedness to it, like moving or bouncing or going from some stretched-thin place down into a bustle-y market. Speech is a different kind of internal connection, like blushing; it brings my body with it.

  23. I realy appreciated your(Amanda’s) responses to feeling like you are a performing seal. I can guarentee that there ARE people out there like Amanda says that DO treat nonspeaking individuals with total disrespect ( oh look at what she’s doing -she is so smart) and then will proceed to do whatever possible to prevent that person from communicating or truly showing that they are “smart”. Whatever smart may be – I rarely use that word anymore. One reason I am such an avid reader of this blog and others is because it gives me insight into understanding those who cannot speak and are not allowed to communicate. Believe it or not there are still professionals out there who are making sure that those who can’t speak are not given any opportunity to communicate. Its good to know that attitudes are changing and hopefully it will filter down to certain people that I care about. Until then I use I what I learn here to empower those I relate to . Amanda I think thats what most of us here were trying to say about your writing. Its a window into a world that many of us were told did not exist but that somewhere along the line we knew was there. Now that you have shown us this world we want others to understand and respect it also. Thank you !

  24. I have no trouble with speech. Speaking doesn’t interfere with other skills.
    I know you don’t believe in the high functioning/low functioning distinction, but I think if one doesn’t focus on one skill to the exclusion of others, a meaningful distinction can be made – with no clear line, and lots of varying, but still giving a very general idea of someone’s abilities.
    My speech is more affected by stress than most people, but much less than some people. If I’m very stressed and have to respond quickly I’ll respond with echoed phrases like ‘leave me alone’ or ‘stop it’ (I often get criticized for not telling people what they should stop doing) but my speech is in general pretty good.
    Of course, even someone like me is in need of more than just ‘social skills’ classes (in fact, I would just get angry in a social skills class because of the assumption that everyone should follow senseless rules). I tend to forget to eat, am very disorganized, and have cleanliness obsessions that interfere with cleaning (because I don’t want to touch the thing I need to clean). And I suspect that just trying to deal with everything I’d need to deal with if I moved out of my home would be very difficult.

  25. If anyone wants a good example of the speech/high-functioning vs “mute”/low-functioning dichotomy, go see CBS’s preview of tomorrow’s (Feb 18) 60 Minute segment on autism. (And “mute” is the word *they* used, not my choice.)

    The main page is at http://www.cbsnews.com/stories/2007/02/15/60minutes/main2483414.shtml

    If you click on “Interactive: Breaking the Silence”, then click on “Facts”, you can find all sorts of wonderful statements. A few examples:

    “Some people with autism are relatively high-functioning, with speech and intelligence intact. Others are mentally retarded, mute, or have serious language delays.”

    “Autism spectrum disorders range from Asperger syndrome, a relatively mild communication disorder, to severe autism in which patients communicate little or not at all with others…. About 40 percent of children with autism do not speak at all.”

    “Notable Sufferers–Among those who are thought to have exhibited traits related to autism or Asperger’s Syndrome (a milder version of the disease) are inventor Thomas Edison (left), novelist Jane Austen, and philosopher Ludwig Wittgenstein.”

    (funny, most people probably don’t really think of Edison as a “sufferer” of anything, rather as a brilliant inventor)

    Anyway, if you don’t mind risking high blood-pressure :) take a look

    California Girl

  26. This comment is unrelated to this particular post. Ballastexistenz, I read in the “Official Papers” portion of your site that you have put yourself on a behavior plan. I am interested in this, because every time I see some kind of “behavior plan,” it’s really bribery, and not a plan to solve problems. I have never known it any other way, and therefore can’t picture what yours is like. Perhaps it more closely resembles a goal-setting situation, like the one I engaged myself in when I wanted to train myself to run 8 miles. Eventually I was able to meet my goal, because it wasn’t an externally imposed thing (like the behavior plans I’ve known seem to be).

  27. Just FWIW, if testiness is what it takes to make yourself understood, I’m all for testiness. It got through, after all; and next time around, I hope to get the point sooner and better.

  28. >>And I can do so to a degree that has meant that NTs have sometimes relied on me to read certain aspects of situations for them, after the fact. Throw me in a room with the language turned off and I can tell a lot of underlying things that non-autistic people can’t normally read.)>>

    Amanda, if it isn’t too much trouble, could you provide an example of the kinds of underlying things that you can pick up in a room or social setting that we NT’s can’t?

  29. I can often tell a person’s underlying emotional state and level of tension and where it is directed and so forth in relation to other people in the room (not even always perceiving the individual people as much as a pattern of motions and sounds in the environment), in situations where many non-autistic people around me have been reading a social mask the person was putting on. (One that I could perceive but not read.)

    This meant among other things that I, and another autistic person I knew, were instinctively very wary of a social worker who turned out to be breaking the law several times over. All the non-autistic people involved were shocked when they found out and said she “seemed so nice” and had “tricked them” into believing she was a nice person. They were surprised that I and the other person had picked up on the danger all along, long before they had.

    Some of the non-autistic people involved in that began asking me about other people, and I tended to be right more often than not, and to pick up on social undercurrents before they could (because they were too busy reading the “I am nice” signals and other signals people were more consciously sending out). (Keep in mind that in order to pick up on these things I might not understand a word someone is saying — I remember being shocked later that a person was “asking questions” in the literal-word sense, because he had seemed to me to more be firing hostility accusations, turns out the mask in that case was hostility-disguised-as-questions.)

    I know an autistic woman who was given a test as part of her autism diagnosis, in which actors acted out facial expressions and such. She was unable to read the acted facial expressions but able to tell from their level of tension and unconscious postures and such what their actual emotions were — which confused the testing process a good deal.

    At a book-signing by Dawn Prince-Hughes in Berkeley a number of autistic people (me included) discussed being able to tell underlying emotions but not the social masks and such that people were putting on, and how this was different from the usual stereotype of autism.

    Donna Williams has written more about it in the book Autism and Sensing, if you want a good deal of detail on this topic. I don’t totally agree with her analysis of it, but I do have a similar underlying experience as her in terms of the patterns we are able to pick up on when symbolic processing is not there to muddle up perception.

    The trouble is even perceiving these things doesn’t mean I can always react in ways that show comprehension of it at the time, I am more likely to, for instance in dangerous situations, find my way into a safer part of the pattern, but will not be able to necessarily show comprehension of why I am doing so. Some people were trying to kidnap me at one point and I instinctively recoiled because of their underlying sliminess but did not realize the precise danger I was in (kidnap and rape) until later when I’d had time to process the language. It’s a different kind of processing, and there are things I miss when I am perceiving in that way, just as there are things that people are missing when they are not perceiving in that way. Sometimes you can come to equivalent conclusions from different parts of the data (“back off because this is slime personified” versus “back off because the things they are saying are things that they would say if they wanted to kidnap and rape you” both result in backing off), and sometimes someone seeing one part will see something the other person seeing the other part does not see and vice versa. Both modes of perception seem valuable.

  30. The problem with live speech is that it requires an ability to distill complex ideas into a simple stream of words, while at the same time trying to gauge the comprehension of the other people around you and if they understand what you are saying, and then stopping or backtracking if necessary to help them understand what you are trying to tell them.

    Meanwhile you have to manage your body and your appearance to look and act and sound and smell in a manner that is appealing or at least neutral to the audience. If people are distracted by involuntary hand motions or whatever, then you have to try focusing energy on stopping/controlling that while still keeping the line of thought going for whatever you’re talking about.

    With written material like this blog, none of that matters.
    – You can take as long as you want to read, reread, and think about what people have written.
    – You can take as long as you want to write, rewrite, and think about how you are going to reply.
    – Your appearance and anything else that might distract people in a real-life conversation is unseen and unimportant, so you don’t have to try to control any of it and “appear normal”. If you want to sit at your computer naked while typing a reply, nobody reading your message is able to know that. No effort needs to be wasted on trying to “manage” your appearance to be acceptable while typing.
    – If you’re having a bad day or cannot think clearly at the moment, there is no problem with just simply stepping away and not writing anything for a while.

    So yes, written material on a delayed-communication system like this blog is completely different from trying to talk to people live and in person.

    How is your experience with online chatting such as on Second Life? How does it compare with the live conferences and posting on this blog? I would bet it is somewhat easier than live meetings since you don’t have to be concerned about physical appearances, but still somewhat harder than blogging since you can’t take your time writing out replies to people.

  31. Speech is an over rated luxury. I find the written word to be a purer form of communication. You, lady, are far more adept at communicating with clarity and reason than 90% of the speaking people I’m forced to communicate with. Here, in the realm of electronic philosophy and free exchange of thought, I judge people not on how they say some thing but what they say. Your message is more valuable because of it’s thought and gracefull delivery not because you rely on typing to communicate.

    I hope you keep these blogs comming. Your story is important, it needed to be told. I respect you, not because of the story, but because you (unlike most of the people I encounter) use the brain in your head. In fact, you use it better than most. Bravo.

  32. Not be able to speak is not the same as having nothing to say. You clearly demonstrate this point. I think a lot of people take their ability to communicate through speech for granted, until it affects them on some personal level. i.e. having a child or relative on the spectrum or with a speech disorder. I love your blog keep it up.

  33. Amanda,
    I found your post on speech and typing to be very interesting. Thanks for your insights. And as far as stereotyping you, I doubt anyone who takes the time to read your thoughts would even try to pigeon-hole you into some kind of standard stereotype. You seem incredibly unique to me. I will note this. One thing you said is that people think that the content of what you write makes you more profound, simply because you write it instead of speak it. I don’t know if I would characterize it that way, for me at least. I think generally, for neurotypical people who speak, speech is usually pretty inane. We fall into a lot of conventional speaking patterms that don’t really mean that much to us other than a pattern for establishing rapport with people. For example, when we greet each other with the phrase, “How are you?”, we really aren’t interested in the details of the other person’s health or well-being, except in a very general sort of way. And we usually respond with “Fine, thanks, how are you?”, or something similar, because it is the acceptable response in our pattern of greeting each other. The actual substance and details of how we are are less important than the pattern we have established for acknowledging each other. But when we write, we usually write because we actually have something more substantive to say, and our writing tends to be more profound, detailed, organized, and substantive than our everyday speech. When we have to give speeches, for example, we usually have to write beforehand what we intend to say because it would be almost impossible to just say it spontaneously. And even as I am writing this, I find it easier, for some reason I don’t understand, to think it while I am typing that I would to just say it outloud. It would be almost impossible for me to speak this paragraph outloud spontaneously, but it feels pretty easy to think and type it. Weird. In any case, I think a lot of people might think that you are profound not because you write rather than speak, but rather because the content of your writing is much more profound than the ordinary spoken banter of neurotypicals. However, I find your writing to be very much equal in depth and meaning as the depth and meaning of the written products of neurotypicals. But that is just my opinion, and of course, it could be wrong. In any case, thanks for sharing.
    C

  34. I find your views on speech very interesting, particularly because the prejudice towards speech seems (at least, to me) to parallel the prejudice towards walking- neither are really the most effective or desirable ways of communication or travel.

  35. This post made me realize something about how I’ve been perceiving some things. I used to be confused by how I would hate some people at first contact and then they would turn out to be awful, because a lot of the time I wouldn’t be able to read facial expressions, explicit body language etc etc. The model of language as taking up space that could otherwise be used for better things and blocking the ability to read underlying social realities is..true, I think, for a lot of people, and I might be one of them.

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