Gee this is familiar.

Standard

Tuesday I got through with two days of something fairly grueling. Not at the same level as going to a conference, but only just barely easier. I could feel my head almost humming afterwards. It was very difficult to perceive or understand much of anything, or to do much of anything. Standard overload stuff.

But the standard overload stuff reminded me of something: This is what it felt like to use speech (including having the “speech-generating modules” online even when not directly speaking) for a few hours, when I was at my best.

Have you ever had the experience of running too many fairly innocuous programs on a computer, so that the computer’s performance slows to a crawl because you’re using all the available memory? That’s what the various activities of Monday and Tuesday were like.

By contrast, have you ever had a single computer program that eats all available memory and still wants more and can singlehandedly grind your computer to a halt so that you can’t use the other programs that you really want to be using right then? That’s what speech was like, even when I was comparatively capable. It’s becoming very obvious to me why my brain decided to either delete it, drastically downgrade it, or limit its availability. That’s what happens to memory hogs.

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.

29 responses »

  1. including having the “speech-generating modules” online even when not directly speaking

    That’s an interesting concept right there…I have noticed that when I’m at work, if I know I’m going to be expected to speak and interact to any significant extent, I have to keep the “speech modules” running throughout the entire day so I will actually be able to talk when it’s time to do so. And I am completely unable to do complex intellectual tasks on those days.

  2. Thats what happens whenever I go to conferences. only my simile would be to compare it to making a long trip in my landrover.

    I might make it there but my engine is not designed for long motorway travel and will end up overheating and giving me problems on the way back.

    As for my previous computer that was always on the edge of crashing because it did not have the power to run all the background memory hogging anti virus and spyware programs.

  3. zilari: Yeah. I’ve noticed that there are several cognitive elements to forming speech that take place before it even gets to the action of speaking. For whatever reason, those pre-speech things are a lot more cumbersome, painful, and overload-inducing than the equivalent precursors to writing. (Which really makes me wonder what both of them would look like on a brain scan.)

  4. would this be why i find it difficult or impossible to do certain stuff (like: read whole books, organize the bedroom, etc.) when i am working (i mean, not at work but when I don’t have summers off? maybe i have some “teacher app’s” running all the time in the background?

  5. And to think that hearing, speaking people (I suppose particularly including non-autistics) assume that speaking is supposed to be the be all and end all, and gee, don’t you WANT to speak? They don’t get that sometimes there’s a cost to speaking, and sometimes other things are just more important.

    I’m a deaf non-autistic and I can speak. And most people, or at least most hearing people accustomed to American accents, can understand me most of the time. Even native Spanish speakers say that my spoken Spanish is about as clear as any American’s Spanish (which I interpret as their polite way of saying that I still have a very heavy American accent :-) ). But speaking is not my most natural, comfortable, preferred method of speaking. Sure it’s nice and CONVENIENT to be able to speak, but speaking isn’t something I do because I think it’s automatically better, and it certainly isn’t something I do because I think it somehow mysteriously makes me “better” than anyone else. Speaking is something I do as an accommodation for the signing-impaired people in my life who wouldn’t understand me if I just signed to them.

    And even with me, if I get upset enough (I guess you could call it emotional overload) my speech and lipreading skills just break down. My speech also isn’t quite clear enough for people who learned English late in life, or for contexts like noisy restaurants where people already have trouble hearing me. Then I’m glad to have other approaches to communication, like pen and paper. I don’t get why some hearing people (non-autistic or otherwise) think there’s something sad or wrong or strange about using alternate communication methods (pen and paper for me, typing for Amanda).

    Once, when I was maybe 8 or 9 years old, I happened to be with a few other deaf kids waiting for our ride to our respective homes. I happened to say something to the hearing driver (with speech) and, instead of answering my question (I don’t remember now what I asked) she became astonished that I could speak, and then went on and on about how sad and terrible it was that the other deaf kids “couldn’t speak” and how lucky I was supposed to be that I could. I tried to educate her a bit (though I don’t remember now what I said, just that I tried, or at least I tried to THINK of something to do, I don’t really remember which). But I was too stunned at the idea that it was somehow supposed to be sad that some people didn’t speak, or that I was somehow supposed to be “luckier” just because I could. So I couldn’t really think of a satisfactory response that would get through to her. I was just too totally thrown by the situation–I couldn’t understand why on Earth this hearing person seemed to consider it “tragic” that the other kids didn’t speak. (I’m carefully saying “didn’t” instead of “couldn’t” because most deaf people, or at least most non-autistic deaf people can speak to some extent it’s just that not everyone can speak clearly enough to be worth the bother of using what speech skills they have with anyone outside of their immediate family … assuming they speak clearly enough for even family to understand.)

    It’s nice to find a group of people who (I assume?) are predominantly hearing who actually get this.

    Sorry for rambling!

  6. I wonder if the speech-as-memory-hog problem might be the reason why some autistic children who have eidetic memories lose that ability in their primary school years. When I was a small child, I could remember every book I read perfectly. That ability started to disappear in fourth grade, and classroom quizzes apparently had something to do with it (I distinctly recall two occasions when I was answering the teacher’s question and the image wasn’t there in my mind).

    Before that year, I wasn’t expected to speak as much. The teachers didn’t have a good idea of what to do with me, and they often just let me sit and read books in the classroom.

    Maybe speaking more in school caused my brain to run out of available memory and forced it to reallocate its resources?

  7. I use the computer analogy a lot. I describe my working memory and executive functioning deficits as being low on RAM — I’m perfectly capable of storing a lot of data and retrieving it well, but if you ask me to do several things at once, one of them is usually going to fail. My balance sucks, and so it’s all I can do to stand on one foot and tie my shoe, sometimes more than I can do. If I’m asked to hold a conversation at the same time, either I stop talking or I fall over.

    abfh: My memory used to be much more photographic than it is now, and I had not thought of it as resource allocation, but that is a very good point. I now have to juggle things like remembering unwritten social rules that I could get away with not keeping in mind when I was small.

  8. I’m not sure if (in that analogy) I’m actually low on RAM, or if the programs my brain will run are all ones that process a lot more data than usual (higher-resolution graphics, higher-quality sound, more actual pieces of information, etc) with fewer shortcuts and therefore utilize more RAM to begin with.

  9. Nice analogy :)

    My speech is that bloated, slow, buggy program you wish you could get rid of but can’t find a good enough replacement for, and that still runs often enough to sort of be useful.

  10. How do people here experience pre-speech brain functions as opposed to pre-writing functions? I actually feel like the pre-speech things are taking place up higher in my head, where as the pre-writing stuff is taking place at a lower position.

  11. I find that the pre-writing functions are a simpler program (so to speak) than the pre-speaking functions: it’s easier for me to move my fingers around a keyboard or hold a pen to paper than it is for me to arrange my mouth in the proper fashion for speaking. I don’t get the spatial interior of the brain effect though, so I can’t say one is higher up than the other.

  12. Trouble is many worded though I be, and thinking through my fingers I can better than holding a pen there are times when I am attempting to write the Wittgensteinien inexpressible. And if there ain’t a word for what you are thinking, then it takes time to find a circumlocution.

    The objects in my ordinary life do not need words, that is to say sounds in my head for me to identify them, use them and know what they are, however for communicative intent they require to be spoken or written. That is the difference.

    Oh if I could but sponge out the ideas I have and they appear on the paper like symbols written in wax when one wipes ink over the page.

  13. As a speaking deaf person, what kishnevi says makes sense to me. When I type, my fingers go pretty much on autopilot. When I speak, I have to focus a certain level of energy in remembering exactly what position my tongue, lips, etc. are supposed to go in, exactly what to do with the muscles in my cheek, and exactly how to control the flow of air etc. — the information my brain has to process for all the mechanics of speaking seem to be a lot of more complex than flickering fingers at a keyboard. I *could* speak without paying attention to all that complex information, but then my speech wouldn’t be comprehensible to anyone except for people who have known me for years (my partner, or my parents) and maybe not even them. Typing is more “brute” than speaking in that the only thing that really matters is that the weight of your finger hits the right key, and presto, you have the right letter. Whereas a subtle difference in how you shape your mouth or vibrate certain things inside can make the difference between an “r” sound and a “w” sound, or the difference between certain vowels. And even experienced speech therapists, I’ve found, can sometimes have difficulty quantifying those subtle differences in ways that make sense, at least for someone like me who has just never heard certain sounds (one area where most hearing autistics have an advantage over me). I can remember being told over and over that the sound “ch” is made pretty much like the way sneezing is done — so for YEARS while I was growing up, every time I would sneeze, I would try to pay attention to what my tongue was doing at that time so I would remember it for when I needed to say “ch” correctly (still an inconsistent sound for me) until another speech therapist said it wouldn’t actually help and couldn’t really understand why earlier speech therapists told me that.

    For people like Amanda who have a little more flexibility in *how* they type than I do (where she doesn’t need to look even if she’s only using one finger) I can see where the mechanical processing difference between speaking and typing would seem to be even higher even though in her case she can at least *hear* the difference between certain speech sounds.

    I don’t know if any of this relates to the hearing autistic experience (as opposed to my non-autistic deaf experience), but just in case this “clicks” with someone.

  14. The trouble in fact is in part that I hear the speech sounds. I noticed while fiddling around with my keyboards, that if a keyboard speaks a word as I type it, I start having almost as much trouble typing as with speech. I have no way of testing this, but I do wonder if I’d be able to speak better (at least in terms of staying on track with words) if I were deaf, given that part of what interferes with speech for me seems to be the fact that I can hear it at the same time that I’m trying to move the muscles.

  15. Interesting. Maybe this is a dumb question, but have you tried really good ear plugs?

    Not that it really matters in the big scheme of things if you ever again re-acquire the ability to speak. (I wholeheartedly agree that speech is over-rated, though I’m admittedly rather biased in that most of the communication that goes on around me would be more accessible to me, personally, if it were conducted in some way other than speech.)

    Could it be part of the general issue of having to prioritize among which skills you use at any one given time (either in general, say this year, or more narrowly at 5:34 pm and 14 seconds on the second Tuesday of March)? Either you can hear and process sounds and translate them into linguistic codes for specific concepts, or you can think ideas and translate them into linguistic written codes and do the mechanics of typing them out, but not all at the same time? Or, er, was that what you were saying and I was too dense to parse it?

    Random side remark: I have a friend who became deaf later in life and thus has near-perfect speech. But she almost never USES her speech. This is because the minute she opens her mouth, people forget that she’s STILL DEAF and still needs them to accommodate that by looking at her when they speak or by writing things down. She finds it easier to get people to remember to accommodate her needs as a deaf person if she just pretends she can’t speak. I don’t have this problem to quite the same degree, maybe because my speech–although mostly pretty good–is not quite so perfect as hers.

    I guess sometimes you just can’t win. Or maybe this is just more proof that speech is more over-rated than hearing, speaking people seem to realize.

  16. Hmm, for me pre-speech is different primarily in that I try to generate the shortest possible sentences (while in writing I don’t mind and in fact enjoy getting rather verbose), and in that a lot of time (relatively speaking) is spent on muscle command rehearsals (something I don’t need to do with typing). Besides being a lot more work, it’s also a lot more stressful, as I know I’m much more likely to fail when trying to speak than when I’m typing.

  17. observer: Dang, that’s an excellent observation (the pre-speech being physically higher and the pre-writing being physically lower. I will, for now, refrain from exploring the evolutionary/socially natural/naturally social implications of that, though it might not be such a far-out endeavor to suggest that forming the written word — or the concepts expressed in the written word — is more, I dunno, primal or naturally facilitated, closer to the frog-brain, etc). I have that sense too. And I’ve been trying to articulate this for a while (I always find myself on this blog saying “I’ve been trying to articulate this for a while”), and may or may not succeed here: when I’m fumbling for words *to write or type*, it actually puts more of a physical strain on my head, as it were . . . I get sort of a, umm . . . *electrical* feel around the base of my head, neck and shoulders that is not at all pleasant; whereas when I’m fumbling for speech, the strain is higher — geographically higher — and almost purely social in nature (if that makes sense), but I at least have the physical release of making *noise*, albeit unintelligible noise, and flailing my hands about when I’m struggling to get speech out. It’s generally not convenient for me to do that when I’m trying to write or type.

    Not sure if that adds anything to this post, but there you are. Thank you. ; )

  18. andrea: Ear plugs stop sound from outside the head. They actually amplify sound from inside the head (because they’re blocking out all other sound, but they can’t block internal sounds). So wearing earplugs would probably make speech more difficult.

    With regard to your friend, I’ve experienced something similar I think. I use a wheelchair part of the time, and it has the effect of making people forget I’m autistic. (I have even had people tell me — only when I was using a wheelchair — that autistic people do X, Y, and Z, so they didn’t expect me to be autistic. When in fact I had done X, Y, and Z, all of which were clearly visible things, right in front of them, for the entire conversation.) Because of this, in some settings I actually try to get along without it (even though this means I can’t walk as far and experience plenty of pain and other problems, and will eventually end up needing the chair — or a bed — for a long time afterwards) just so people will remember that I’m not an NT-in-a-chair. Which is one of the weirdest versions of trying to pass for physically non-disabled that I’ve encountered: I attempt to pass for physically non-disabled (or physically less-disabled, by using a cane instead of a chair) at times so that people will remember I’m cognitively disabled.

  19. My husband gets migraines, and when he has aura, it’s a rare (but not unheard of) one — aphasia.

    I discussed the whole speech process with him, and each part of the system has problems, but apraxia is the worst of it.

    Now, he telecommutes, and spends an awful lot of time communicating and working by typing on a computer, instead of speaking, so there are times when he maybe had the aura — but he wasn’t engaged in trying to speak with anyone, so he missed it. Either that, or there was no aura those times — but it’s hard to tell one way or the other. His ability to type fluently and read and process text are unaffected until the migraine pain actually starts.

    (He may or may not have CAPD, as well; he’s going to go for a diagnosis on that sometime next month.)

  20. I would tend to agree with the sentiments expressed here regarding the value of speech. As a non-autistic, I find speech more convenient than trying to type what I want to say, my blog being the exception. I certainly can’t type no where near as fast as Amanda and I certainly can’t type without looking at neither the keyboard or the screen. My handwriting is getting progressively worse as I age.

    I would say that communication is what is important, not the method used to do so. If you can say what you want with a keyboard, or a pad of paper and a pen, or sign language, or anything else out there available, then you are communicating. The absence of speech in that communication is inane.

    Amanda, is there any software you could use that would let you wait until you are finished typing all of what you want to say to activiate the speech mechanism? I’m thinking along the lines of a send command you can launch when you are ready for the automated speech to say what you have said in type. Just wondering.

  21. Amanda, re internal noises: I assume you’re talking about things like the sound of blood rushing in your veins, heart beat, etc? Okay, I forgot that hearing people hear those things (I don’t, and didn’t even know that it was normal for hearing people to hear those things until I was in my 20s). So, yeah, I can see the limitations of ear plugs in that case.

    Re your situation and my friend’s: I guess this comes back to the oversimplifying stereotypes that people make. For my friend, the issue seems to be that people associate SPEAKING ability so strongly with HEARING ability that they seem to have trouble conceiving of a person who can speak so perfectly but who still cannot hear them. (Do people ever assume you’re deaf just because you usually don’t speak? Or assume that you necessarily sign more than you do?) For you, the issue seems to be that some people can’t seem to grasp that having one disability doesn’t make you magically immune to other disabilities or health problems.

  22. No, I’m talking about speech. Speech is something you hear inside your head, so it’s louder if you put earplugs in than if you don’t.

    Yes, people often assume I’m deaf, although the response isn’t usually to sign, it’s to stop talking to me altogether and run around frantically looking for a pen and paper to write things down for me. I at one point had a written thing that said “I’m not deaf, more like the opposite, please speak the way you always do,” and people would decide I was saying I was deaf, so I stopped using it.

  23. Ok, I guess maybe this is a hearing thing that I don’t get (bone conduction hearing?)

    Yeah, I get the “running around for a pen and paper” thing a lot too — which is sometimes nice (since, unlike you, I do sometimes need for people to write things down) but sometimes annoying because I *do* lipread some and there are times when I wish people would at least try that first, or at least *ask* which I prefer. Then there are other times when I need for them to write to me but they either can’t read or they just can’t seem to grasp the idea of writing as a means of communication. (Once or twice I’ve gotten this reaction: *gasp*! “You use WRITING for communication because you can’t hear! What a BRILLIANT idea! You disabled people must be so CREATIVE to think of these ASTOUNDING strategies …” Not that exact phrasing, but pretty much that tone. Yeah, sure, I’m so creative that I’ve come up with the exact same brilliant idea, oh, only 365 days a year since the age of 7. Gnrnk.)

    Of course most people don’t know how to sign, though every once in a while someone will apologize to me that they don’t know how, which always puzzles me (do they really think that I expect the whole world to learn to sign? I mean, hey, sure, I would LOVE it if everyone did, but I’m a smart girl, I’ve had 37 years to figure out that most people don’t!)

    Some years ago I had another friend (no longer in regular contact) who, like you, was hearing but could not speak (for completely unrelated reasons, though). She told me that she has had experiences where people not only assume that she is deaf but INSIST to her face that she MUST be deaf. If she tried to explain, the other person would insist she had to be in denial and had to learn to accept that she was deaf. So sometimes she would just give up and let people assume she’s deaf. Then they’d ask her if she could lipread. Then she’d say, “Yes, a little bit.” I asked her why she didn’t say that she lipread perfectly, or very well (since, technically, that’s pretty much true). And she told me that, if she tried to make that claim, people would either freak and act all surprised or not believe her again.

    Other times, she pretended to be deaf in part because she identified with the Deaf community and was comfortable with the cultural identity even though she was actually hearing. She used ASL with people who understood ASL, and writing with everyone else.

    When she and I went to restaurants, the waiters always got confused: they would try to talk to me because I was the one using my voice for both of us, but then I would always look at my friend so she could translate from their spoken English to ASL for me. Waiters couldn’t understand that SHE was the one who could actually hear and understand them, but *I* was the one speaking back to them!

    Have you ever tried using the phrasing “I can hear fine” or the like, instead of “not deaf”? Apparently there’s research saying that people don’t parse negative phrases (particularly the word “no” “not” etc) as easily as they parse positive phrasing. So SOME people MIGHT parse “can hear you” better than “not deaf.” But then again, I can see where the general assumption that deaf means can’t speak, and can’t speak means deaf could still be strong enough to override that particular fix. Or else, if they do understand, maybe they’ll just try to tell you that you’re in denial :-)

  24. Not bone conduction — most of the sound happening in a person’s voice takes place inside the body, resonating in various open areas. A person can make a fairly loud noise (at least I can) with no air escaping the mouth and nose at all. So plugging the ears (or even just popping them a certain way) just means that the ears are entirely listening to the resonant cavities inside the head, rather than external noises. It makes external noises softer and internal ones louder.

  25. I am not autistic, but came to this site after seeing the news articles on CNN about Ms. Baggs and watching her video on YouTube. I never understood the loss of language in autistics until reading this post and your analogy makes it so much clearer to me. As a counterpoint, I would offer that I actually function in the opposite way, while I am not autistic, I am dyslexic, so actually typing this is very hard for me because my mind has to work very hard at putting down words and letters in the right order (and I apologize right now for any errors that you find), while speaking seems very natural to me. If I could function in a word where I never had to write but could only speak I would be much happier and productive. Therefore, I can understand your prospective where spoken language is difficult and you would choose instead to type.
    (To give you a sense of my condition – the above took at least 20 min to write and spellcheck.)

  26. 20 mins and I still make mistakes. I am sorry it should be
    “If I could function in a WORLD” not WORD “where I never had to write”

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