Things there should be words for.

Standard

I recently got in the mail the dictionary of Laádan. Laádan is a constructed language that is supposed to be suited to communicating the experiences of women in particular, and also just has a lot of cool words, like doólelasholan (alone at last, after putting up with tiresome people). I had heard that autistic people were trying to construct a language for autistic experiences, but have little to contribute to that: if such a language is constructed, I don’t expect to be able to learn to speak it.

There are, however, a number of experiences (not all peculiar to being autistic, but certainly prominent for many of us) that I really wish could have a simple word or phrase for them. The problem is I have a lot of preferences for these things. Most out-and-out neologisms, words coined out of nowhere, are not my preference. Nor are words (even words like “conlang” for “constructed language”, which I use grudgingly) that sound jargonny and out of place. Nor are words that sound clinical, medical, psychiatric, or excessively long and Greek (it’s usually Greek that comes up with awful words like “monotropic”). Short, ordinary-sounding phrases are more my thing, just novel combinations of words that sound like they could easily go together, but usually don’t. (Given that I’d expect to use these words on a regular basis for actual communication with everyday people, who aren’t likely to learn any of the other things any more than I am.)

I started making this list while I was crashed and sick after the CNN thing. It’s nowhere near complete, and there are a number of things I want to add to it. But here’s what I’ve got so far:

The way things look when they look detailed, sharp, and intricately beautiful, but you know that even an ounce more stimulation will make them sharper and jagged and painful.

The high-pitched buzzing and humming in one’s head that can go with overload.

The point at which language cannot be overloading because it’s not processed as language.

The point at which the meaning of language cannot be understood, but the brain reacts to all language and symbol by trying to decipher it, and failing, generating intense amounts of pain whenever exposed to it.

The state of being able to write but unable to read, and therefore unable to check over what you’re writing to see if it makes sense or not. (May feel like you’re not making sense even if you are.)

A piece of trivia remembered at random at a time when nothing else or little else makes sense (example from my own life: not knowing what a brain was and unable to understand that anything I wasn’t directly perceiving could still exist, but automatically and randomly identifying a particular handshake as Masonic).

The only object in the world at a particular moment that makes sense.

Knowledge that has remained dormant and the person was unaware of it, until the moment it was triggered.

The state of being able to come up with a complex idea, but fully aware that if one actually moves in order to write, the brain will be too busy with the movements and extra perceptions involved to be able to write down and/or translate the actual thoughts.

An ability which seems to spring from nowhere, and possibly to vanish back to nowhere.

Being asked a question, and knowing that the answer is stored somewhere in your brain, but being unable or barely able to answer it.

The kind of person who, upon entering a room, makes communication impossible or distorted.

The knowledge that everything you’re perceiving is extremely detailed but that you’ll forget most of it later.

The vivid sensory echoes of things that have been perceived throughout the day, that flash unwillingly and unstoppably and “as if real” throughout one’s head when overload yet given half a chance to rest, and that may be so real-seeming as to be highly confusing until it’s over.

The experience of finding only one person in a roomful of people whose body language you can immediately and thoroughly read, usually because that other person happens to share your neurotype.

The distortions that come into an action through the application of conscious effort/thought.

The grace, smoothness, and accuracy of an action arrived at through triggering automatic words or movements without the interference of conscious/symbolic thought.

An inaccurate answer given not wit the intent to deceive, but because under real or imagined pressure, one can only come up with an answer that sounds plausible, but is unable to verify whether the answer is correct. (For instance, a friend of mine saying that she has “absolutely no learning disabilities” when asked if she had learning disabilities, when in fact she was known at that point to be dyscalculic.)

A plausible-sounding pattern of words put out in response to another set of words, more by pattern-matching than communication.

The ability to say words you don’t actually understand (in more jargony terms, when your expressive language seems to be better than your receptive, because you’ve memorized so many chunks of word without necessarily the meaning).

A gesture or word that you use for an extremely large number of things and honestly expect or wish people would be able to tell the difference.

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.

43 responses »

  1. I’ll be interested to see the words that you come up with, especially if you’re going to avoid jargon or Greek!
    I like this one ‘The knowledge that everything you’re perceiving is extremely detailed but that you’ll forget most of it later,’ amongst others.
    Perhaps you could number them? Now I’m off to look up dyscalculic!
    Cheers

  2. I’ve taken LSD many times, almost always with small groups of other people, and most of the people I’ve taken it with have been neurotypical. I’ve found that all of the phenomena you’ve described above are common experiences for people under the influence of LSD, regardless of their neurotype.

    Sometimes, one person in a group of people on LSD will attempt to describe what he or she is experiencing, and it will turn out that others in the group are having similar experiences, and sometimes this will lead to the group coming up with a word or phrase for the phenomenon in question. The words and phrases are generally silly in-jokes that would make no sense to anyone who wasn’t on that particular LSD trip, but one group I tripped with regularly did come up with a really useful term for the first item on your list (“The way things look when they look detailed, sharp, and intricately beautiful, but you know that even an ounce more stimulation will make them sharper and jagged and painful”) – we called it the “clarity threshold.”

  3. Things like the “clarity threshold” were actually less common for me when I tried LSD, but I had less overload in general on the stuff (and I view “clarity threshold” as a sign of overload — and may use that term from now on if that’s okay, because it’s exactly the sort of phrase I was looking for). Other LSD users had a totally different experience than me, and not one I could readily comprehend for the most part. Whereas other autistic people (some of whom have never tried acid) have said they know exactly what I mean for that visual thing, but no word for it.

  4. I have never taken LSD, or indeed any other drugs and can categorically state that an awful lot of experiences mentioned in this thread are what I experience. And no, I don’t have words for them. The closest I can get is trying to match them with what I see as similar things. Failure to understand language – which does not happen usually more than twice a month for me, though sometimes twice a day if I am really stressed – I equate to listening to a foreign language. Things looking sharp and more detailed I call a shifting of perspective, with me it usually happens when I stop seeing things in miniature for a short while.
    The one term that I have managed to coin to explain exactly my experiences is the probable overloading when there is too much auditory and visual stimulation due to large amounts of people suddenly appearing. This can happen, for example, when waiting on a railway platform and a train gets in and loads of peopel suddenly get off the train and crowd onto the platform. I call it a “zerg moment” after a game called Starcraft which featured these aliens called zergs that had the capacity to suddenly appear out of nowhere in large numbers.

  5. “The high-pitched buzzing and humming in one’s head that can go with overload.”

    I have this all day on days following nights when I don’t get enough sleep, I don’t know if it’s exactly what you are feeling. I have never heard anyone else describe it, but it might be commonish, I don’t know. My whole body feels sick and there’s that buzzing in the head. It goes away with sleep.

    I don’t think I have a need for words for the other cases and situations you described, but I wonder if this one:
    “The kind of person who, upon entering a room, makes communication impossible or distorted.” could be described using the word “sink” as in “heat sink.” I’m not sure if “communication sink” really works though, if it automatically pulls up an image of a kitchen sink.

  6. Another one:

    The point at which, when lying down or otherwise de-stressing, the pain and/or buzzing and/or etc. of overload vanishes and is replaced by something a lot quieter even if overload is still present.

  7. Yeah, I’ve found that there are many ways in which LSD tends to affect me differently than it affects the non-Autistic people I’ve tripped with, and one of those ways is that I don’t tend to overload on LSD, even in really extreme situations, whereas non-Autistic people tend to overload MORE easily on LSD than they do when they’re not on LSD.

    And by all means, feel free to use the term “clarity threshold” wherever it suits your purposes – I’d be happy to see more people get some use out of the term.

  8. Interesting…I’ve definitely had the “clarity threshold” thing before, and in addition to that, spent periods of weeks or months over the edge of the threshold (and it didn’t have anything to do with any sort of drug, just overwork and sleep deprivation and not eating enough, etc.). The time I spent the longest in that state occurred about 8 years ago, when I was 20…at the time I tried to explain it to myself as a result of suddenly having internalized the fact that everything was made up of smaller constituent parts, and I would write things like:

    When walking down the street, I do not simply see streetlights and trees and houses. Rather, I see the dust-filled eons before any of those things had been shaped, the molecules that make them up, the subatomic particles that dance when the lights switch on at moonrise and glow yellow. Of course, I do not “see” these things in the physical sense, but my mind does. It is pleasant in some ways–I trule marvel at the complexity and beauty of the universe, and it is nice to have some idea as to how it all fits together. But at the same time, I am vaguely disturbed by just how “transient” everything seems.

    I also remember feeling a sense of familiarity when (don’t laugh) I first saw “The Matrix”, and there was a scene in which the area around the characters suddenly stopped looking like formed objects and became a landscape of source code.

  9. A propos “The point at which language cannot be overloading because it’s not processed as language” — Gershon Blackmore has a phrase to describe language itself, in such contexts: “blammety-bip-bop”. I’ve seen him use “blamming” as the associated verb-form for producing such language.

    A propos “The kind of person who, upon entering a room, makes communication impossible or distorted” — I once jokingly proposed an “Einsteinian” theory of social interaction. That theory holds that egos have mass; the larger the ego, the more massive it is; the more massive it is, the larger its gravitational field; and that gravitational field bends and distorts attempts at communication within its vicinity. Maybe it’s less of a joke than I thought when proposing it…

  10. I wish there was a word, sign or wathever for the periods of time that I don’t feel to talk, but without any reason other than not feeling to talk.

    I’ve been quiet for some weeks now and I got emails from people who mean well, but asking why I keep silent and if there is something wrong or even people asking if they have offended me because I suddenly don’t speak anymore. Then I have to explain there is nothing wrong which is something I don’t want to do, I merely don’t feel talkative or have no desire at the moment to write. I want complete silence and that is relaxing.

    A sign or word to express that would be nice, something like “Happy Silence”, I’ve looked up how that would be in Latin and that would be something like Beosilentium, so something like “BS!” would be nice if that got spread out. It would avoid long explanations why I have periods I don’t wanna talk.

  11. AnneC—

    I also find the smaller constituent parts maxim interesting. It is fascinating to me that infinity goes both big and small. Somehow, it seems a little easier to conceptualize infinitely larger than infinitely smaller. Infinity going larger needs more space, which I get and it seems plausible. Infinity going smaller needs less space, but less and less space seems to imply eventually reaching nothing. That does not compute well.

    Perhaps the juxtaposition of infinity and limit, which is fundamental to survival (i.e. too much of anything can be harmful) can be termed “infinlimit” or “infinlimity.”

  12. I’d like words for many of those, too. Here are a few others:

    Suddenly discovering that you’re in a different place of the room or apartment (or whatever) and stimming intensely.

    The peacefulness of voluntarily zoning out, not due to overload.

    The almost pain, almost tickle, almost electric shock of being gently touched in the wrong way or place or time.

    The feeling of becoming aware of your own body and its myriad of signals again.

    These sort of have words already, but only in a very broad and (too my mind) too general sense:

    Having a sequence of muscle movements planned out but being unable to carry it out because you can’t find your muscles (or can’t remember how to look for them).

    Having one sense temporarily cancelled out by intense input from another one (such as losing eyesight (or understanding of it) due to a loud noise).

  13. What AnneC wrote reminded me of two things:

    The times when the spaces become/are so much more clear/present (and sometimes, meaningful somehow) than the objects between which the spaces are.

    and

    The Position of the Sparrow, a poem by Shinkichi Takahashi. You might like it, Anne.

  14. I also would like words for many of the experiences you mentioned here, preferably if such words were relatively short and easy to read, type, write or pronounce. Words that easily flow off the tongue (or fingertips), and ones that sort of fit in with the “flow” of a sentence It can be exhausting as it is being a person for whom the written/spoken language is not natural and trying to express ideas and concepts for which there are no known words.

    Sometimes I produce a kind of monosyllabic vocalisation (like “fneah”) instead of a real word when I am trying to express a concept I don’t know the word for, but no one knows what a fneah is, so real words would be much nicer.

  15. Words and language. It’s amazing to me, but the more I read and the more I learn, the more I realize how much of this is about communication barriers. I smell an “article” coming on and wonder if you would mind my use of your work as a reference. (I’ll email you or something when I get that far for permission on specific posts/links to quote.)

    It seems to me that we don’t expect to go to Italy and find the natives to be well versed in English. We don’t go to Spain and expect the Spainards to be able to easily communicate with us if we haven’t even bothered to learn the basics of their language.

    If we arrogantly and selfishly refuse to learn the local customs and means of communication then we cannot expect to have a fulfilling experience in a world foreign to our experience, thereby missing out on what could have been an enriching, educational and wonderous adventure.

    Further, we cannot expect every dialect in every Nationality to remain constant, nor every custom to be identical across the board for that matter. Just because we have learned ONE, does not mean we automatically understand ALL. It simply means we have a basis to begin with.

    How sad that we (as a society) attempt to speak FOR autistics when we haven’t even bothered to do the same “homework” we would do before visiting ANY culture that differed from our own.

    I’m struck by the idea that there is a need to invent words to describe experiences, thoughts, emotions and situations outside the realm of the “normals.”

    Words seem so difficult to focus on, use and implement for many and yet the need remains. Obviously, from reading this thread, so does the desire.

    It makes me wonder “what if” in profound ways that I’ve never looked at before, starting with, Could it, at last, give “society” the idea that we are dealing with a “Nationality” here and not a “defect?”

    I apologize for rambling so much and not expressing my thoughts well. It seems that my brain is overly crowded with new information I haven’t had time to sift through and digest properly. Add to that a very limited schedule and you wind up with gibberish like I just wrote.

    But I’ll post it anyway in the hope you can read between the mishmashed lines and figure out where I’m going with it. ;)

  16. Having a sequence of muscle movements planned out but being unable to carry it out because you can’t find your muscles (or can’t remember how to look for them).

    I get that one a lot.

  17. How sad that we (as a society) attempt to speak FOR autistics when we haven’t even bothered to do the same “homework” we would do before visiting ANY culture that differed from our own.

    I see the same kind of arrogance in the way that some hearing people approach deaf and hard of hearing people, but perhaps particularly when approaching those who are culturally Deaf (not all deaf people necessarily identify with the cultural and linguistic community, though many of us do belong to one).

    If you are looking for multiple analogies asides from the autistic experience, you could look into things like the history of sign language research (Bill Stokoe, 1955, Gallaudet University), and also the importance of the difference between organizations OF the Deaf versus organizations “for” (choke, gag) the deaf, etc.

  18. Sometimes I produce a kind of monosyllabic vocalisation (like “fneah”) instead of a real word when I am trying to express a concept I don’t know the word for, […]

    Oh, me too, quite frequently. There should be a word for that as well.

  19. the forum might be a good place to post this if you want to make a project out of it…..coming up with phrases that many can agree on……group project. Just a suggestion…..up to you……..

  20. “The kind of person who, upon entering a room, makes communication impossible or distorted.” I have a word for that, it’s Katie.

  21. I see the same kind of arrogance in the way that some hearing people approach deaf and hard of hearing people, but perhaps particularly when approaching those who are culturally Deaf (not all deaf people necessarily identify with the cultural and linguistic community, though many of us do belong to one).

    If you are looking for multiple analogies asides from the autistic experience, you could look into things like the history of sign language research (Bill Stokoe, 1955, Gallaudet University), and also the importance of the difference between organizations OF the Deaf versus organizations “for” (choke, gag) the deaf, etc.

    (I hope that’s how you make italics here, for that wonderful “quote” from andreashettl.)

    Quite right! I’ve seen that too. In only a few instances, however, since my “exposure” has been low. For example, my best childhood pal had a sister who was “away at school” much of the time. But I delighted in showing off the signing skills I learned between her “vacations” home. Joni had SUCH a great sense of humor and she could inflect sarcasm and wit into her signs that amazed me as a child of seven or eight. As we grew older and I learned more about her “world,” I discovered many of the same things that I have here. Because we had a “relationship” by then, she could tell me things.

    Often, her stories horrified and baffled me. Often I wondered how she could be such a witty and obviously incredibly intelligent person when so much of the world wrote her off, sent her to “school” and refused to allow her to be a fully functioning member of this square box that we insist cannot bend to accomodate any curves at all.

    It still saddens me to remember hearing on the playground that “Christy’s sister was strange.” But there is real hope. It’s not so strange anymore. My mother met a little girl of no more than five in her store just a months ago. She once hesitated about Christy’s “odd” sister. But when that little girl began to sign to her mother…my mother had signs to give back to them both. Yes, it’s been 30 some odd years since then.

    But in the history of things, in perspective, that’s a SINGLE GENERATION!

    And so, I pretend that it doesn’t happen that way as much anymore. I pretend that because there are books and video tapes and “experts” running around telling us to teach our babies to sign, that the deaf community (defined or not, yes, blech, ug, er!) is more “accepted” than it used to be. In many ways it is true. In many others, we have a long, long way to go.

    And I thank you, andreashettle, for reminding me of it. In the same way that Japanese culture is not the same from region to region or individual to individual, it would do us all well to remember that no community is homogenous, all individuals retain their own traits, personalities and perspectives and just as we take that fact for granted in every day life, we should take it for granted across the board, no matter the culture or nationality of those we encounter.

    It simply is and there are no exceptions to that rule.

    In the meantime…while we are defining words that need to be invented, could I have one too, please?

    When my tiny daughter freezes in the middle of an action, any action, and turns her face to the sky, saying “Mommy! Hear it?” Can I have a word for the range of wonder and confusion and astonishment that I feel as the seconds pass and I have no clue what she has heard…only moments later to hear an airplane some 30,000 feet up cross our horizon?

    Is there a word already to describe my pride, my bemused wonder, my sense of loss that I cannot recognize or sense the things she does? My sense of pride (selfishly, I know) that she is a part of me and yet so amazing, my sense of wonder at what I am missing, my sense of bemusement that she doesn’t miss these things and I do, my sense of gratitude because she is able to bring such things to my attention, my sense of loss because I obviously miss so much in my every day life, blocking out things that are exciting to her so that I can focus on things closer at hand? My sense of regret that she will one day learn to “tune out” the way I have in order to get along in the world?

    No, she has not been placed “on the spectrum” but in the same way that an Autistic has a different focus from mine, a different perspective, and vision, I am in awe of what I must be missing in my own perspective and find it a worthy endeavor to disvcover just what that is, maybe not for myself, but for society as a whole.

    What are we losing by blocking off so much of ourselves?

    From the eyes of a child, or the mouths of babes, (or the deaf, or the Autistic) it’s still valid and true, if only we could see it that way.

  22. PS. That D in Deaf should’ve been capitalized along with the A in Autisic. (Just the same way that J in Japanese or I in Italian is.) I’m sorry if my silly conditioning gave offense. I’m trying to break out of it, to truly “get it right.” I have a way to go, but your (collective) wecloming tolerance of my presence here has already given me much to grow on. Thank you.

    Now, facing an overload not TOTALLY disimilar to many of you here, I must get horizontal for several hours before I can face another day.

    We may be different, but I’ll wager we have more in common than not. Thank you for teaching me that and putting up with my faltering steps toward understanding.

    I’ll get there, I promise.

  23. When a single word can’t be invented, a phrase or even an entire sentence can sometimes help. I came up with a whole bunch. I hope some prove useful to you.

    The state of being able to write but unable to read, and therefore unable to check over what you’re writing to see if it makes sense or not. (May feel like you’re not making sense even if you are.)

    editor’s block
    (parallel to writer’s block)

    Knowledge that has remained dormant and the person was unaware of it, until the moment it was triggered.

    provoked memory
    provoked recall

    The way things look when they look detailed, sharp, and intricately beautiful, but you know that even an ounce more stimulation will make them sharper and jagged and painful.

    I’m squinting at the almost-blinding clarity

    The state of being able to come up with a complex idea, but fully aware that if one actually moves in order to write, the brain will be too busy with the movements and extra perceptions involved to be able to write down and/or translate the actual thoughts.

    too overstuffed with this thought to move without losing it

    An ability which seems to spring from nowhere, and possibly to vanish back to nowhere.

    a peek-a-boo ability

    The kind of person who, upon entering a room, makes communication impossible or distorted.

    communication black hole
    he’s got a communications-jamming aura

    The knowledge that everything you’re perceiving is extremely detailed but that you’ll forget most of it later.

    I’m seeing the evaporating vivids again

    The distortions that come into an action through the application of conscious effort/thought.

    centipede stumbling syndrome
    (if a centipede had to THINK about how to move all those legs, it would trip over them)

    An inaccurate answer given not wit the intent to deceive, but because under real or imagined pressure, one can only come up with an answer that sounds plausible, but is unable to verify whether the answer is correct. (For instance, a friend of mine saying that she has “absolutely no learning disabilities” when asked if she had learning disabilities, when in fact she was known at that point to be dyscalculic.)

    grabbing for an answer and missing

    A plausible-sounding pattern of words put out in response to another set of words, more by pattern-matching than communication.

    talking like a verbal mirror
    talking like an echo chamber

    The high-pitched buzzing and humming in one’s head that can go with overload.

    I’ve got overload carrier-hum
    I’ve got overload 60-cycle hum

    The point at which language cannot be overloading because it’s not processed as language.

    I’ve lost my language, therefore it doesn’t hurt

    The point at which the meaning of language cannot be understood, but the brain reacts to all language and symbol by trying to decipher it, and failing, generating intense amounts of pain whenever exposed to it.

    my language hurts like a hangnail when you talk

    Being asked a question, and knowing that the answer is stored somewhere in your brain, but being unable or barely able to answer it.

    it’s mentally misfiled
    it fell between my mental manila files

    The grace, smoothness, and accuracy of an action arrived at through triggering automatic words or movements without the interference of conscious/symbolic thought.

    Zen co-ordination

    The ability to say words you don’t actually understand (in more jargony terms, when your expressive language seems to be better than your receptive, because you’ve memorized so many chunks of word without necessarily the meaning).

    talking in magic cookies
    (from the computer jargon “magic cookie”)

  24. You know who I miss? (*whom* I miss?)

    J. Y’all remember “J”, who commented frequently for a long while but who as of late seems from my end to be markedly absent from the forum? Are you here, my dear? Assumed or resumed an identity with more letters?

  25. Since not all deaf or hard of hearing people necessarily identify themselves with the cultural community, not all necessarily capitalize the word “Deaf.” Even I tend to go back and forth when talking about myself. Some deaf/hard of hearing people even define themselves as “hearing impaired” though many who identify with the cultural community (and I think maybe even some who don’t) don’t like the term or may consider it offensive. As you say, there’s nothing homogenous about it.

    Many deaf children actually have very positive memories of growing up at residential deaf schools. For many of them, that’s where they learned sign language (especially in older days when parents were less likely to sign). And there were (and maybe still are) also many deaf children who loved going to school and hated coming back home because school was where they had (have) communication, home was where they didn’t (if the parents didn’t sign) or maybe only have partial access (if the parents sign but don’t use it consistently).

    There are still some residential deaf schools around. Many have closed down, but many in the culturally Deaf community see that as a very bad thing — they want to PRESERVE deaf schools as an important means of transmitting Deaf culture to a new generation of Deaf children. 90% of deaf kids have hearing parents, and about 90% of deaf parents have hearing kids (not always the same 90%, but often). So Deaf culture is usually transmitted among non-relatives. Similar to the Gay/Lesbian/Bisexual/Transgender communities, and similar to the growing Autistic community (though with autism, I get the impression that the odds of having other autistic relatives seem to be a bit higher than it is in the Deaf/deaf community–does anyone here happen to know the actual percentages?)

    Webbie, it is no hardship “teaching” or “putting up with” your “faltering steps” when sharing information with someone who seems so eager to learn. So much more rewarding than when I try to educate people who don’t want to understand!

  26. Not sure if there’ll be reliable figures on autistic people having autistic relatives just yet; I imagine there will be more information available in the coming two generations, since it’s very likely that autistic people of our parents’ generation and before were (and folks of our and newer generations still are) given all sorts of alternate “diagnoses”, and many more have “passed” for neurotypical. Since identifying autism is not as exact a science as is identifying deafness (though I’m sure a number of deaf/hard of hearing people have “passed” within the hearing population as well), the figures will probably be hazy for some time. That touches on the misconception that autism is an “epidemic” that has sprung up in recent years, and that more and more autistic kids are coming into being. It’s quite more likely that the demographics have been about the same all along (much like the demographics with gay/lesbian/bisexual/transgendered identity), but in the past a lot of folks have been – and some folks still are – given, or give themselves, alternate labels or remain in the closet.

    But yes, it certainly seems that the likelihood of autistic folks having autistic relatives is much greater than the likelihood of deaf folks having deaf relatives, since many autistic people mention having relatives who were/are autistic or whom they suspect were/are autistic (I suspect at least three in my own family; two were given diagnoses of schizophrenia and institutionalized, and one I swear is in denial and just barely passing); but I only think that now that I’m looking at those percentages for deaf people – my goodness, andreashettle, I’m actually quite amazed that the likelihood is that low for deaf families; I thought the incidence was much higher, especially in families where both parents are deaf. Maybe it’s because I’m recalling seeing an ASL conversation in which one person asked the other if her kid was deaf too, and she said, “No, he’s hearing”, and made that face of slight tragedy/disappointment that you see a lot of people outside the DP community making when they say their kid is something other than typical. ; P

    As for capitalization, I’ve always preferred lower case when I’m simply referring to the physiology, and use upper case only if I’m juxtaposing with other upper-cased cultural groups, or if I’m referring specifically to identity within a culture – for example, “culturally Deaf” definitely warrants capitalization lest the phrase be confused with one of those derogatory idioms (like “deaf to culture” or something) that so miffs Mary Johnson. ; )

    And I always thought it very interesting that Deaf culture is one of the few – perhaps only – cultures in this nation that embraces (for reasons in addition to fellowship and nostalgia) establishments that would be viewed as segregated institutions to a lot of other cultures. Cool . . .

  27. And I think Nabokov could have been employed to come up with organic words for a lot of those entries, and I believe that the pleasant ones would have a lot of “l”s in them, and the unpleasant ones would have a lot of “g”s in them. He wrote something about trying to envision an experience, at the time it’s happening, as you know you’ll remember it later. Or something.

    Hmm. Seems I’ve written something like this before. At least there’s a French word for *that*.

  28. yeah i was thinking that this is a job for poets. word-juxtaposition and all that. i wish i were a poet at this time (sometimes i have been more that way than i am in the last several years).

    i quite like some of those from “dteleki”; some made me wonder if the meaning is different to you vs. to someone else and those might need 2 words for different kinds of that. (i think i was thinking this about the “overstuffed” one.)

  29. >The state of being able to come up with a complex idea, but fully aware that if one actually moves in order to write, the brain will be too busy with the movements and extra perceptions involved to be able to write down and/or translate the actual thoughts.

    Soufle` idea? (jostle anything and it deflates)

    >The experience of finding only one person in a roomful of people whose body language you can immediately and thoroughly read, usually because that other person happens to share your neurotype.

    Neurofamiliarity?

    >The distortions that come into an action through the application of conscious effort/thought.

    I think there’s an actual Zen word for that, but Google is not helping me remember it. “Too much mindfulness” is one of the usual (so-so) translations.

    >The grace, smoothness, and accuracy of an action arrived at through triggering automatic words or movements without the interference of conscious/symbolic thought.

    Acting without mindfulness. “No mind.”

    >A plausible-sounding pattern of words put out in response to another set of words, more by pattern-matching than communication.

    Tetris Talk?

    I have a bad case of that. (bad in terms of cogitive dissonance & dissociation from speech, I mean). Trying to start a slow deprogramming process.

  30. speaking of poetry.
    (duh.)
    there’s got to be phrases for some of these things in DonnaWilliams’ album that you showed me, and maybe TRKelley’s lyrics, too. i am gonna hunt them tonight.
    and other autistic poets… you might have coined some phrases yourself already. and could check Tito M. and that guy in Singapour and … oh man there are a lot of autistic poets, right? … and that kid with the groundhogs…

  31. (prairie dogs, sorry!)
    and Evonne, here, i just remembered is a poet, right?
    and Larry is a word-slinger of various kinds

  32. I hope I haven’t just inadvertently volunteered for an assignment. I believe I’ve already volunteered myself for a few projects in recent months and totally flaked on ’em . . . : P

  33. Evonne (in comment #30)

    You raise some good points, re, the comparative difficulties of accurate diagnosis, at least in terms of modern times with modern equipment in rich countries. Today, they can diagnose hearing loss in new born infants.

    Even in the absence of appropriate technology (in many developing countries, for example, this is still a major issue), it’s easier to recognize deafness even if you’ve never known anyone else who was deaf (Gee, this kid never seems to respond to noises!), whereas with autism, I could imagine that in a developing country where maybe they don’t have the same awareness, someone autistic could be seen as simply, “Well, that’s just the way Jamal has always been” and not as something to be diagnosed. Or if diagnosed, they might lump it in, along with mental retardation and learning disabilities and schizophrenia and so forth, into a single label, maybe “mentally ill” or whatever the local term may be.

    As for the numbers with deaf people — there ARE some all-deaf families out there, and even some families where generation after generation have at least some deaf members. But it basically comes down to exactly what caused the hearing loss. Deafness can be caused by things that are not genetic — by diseases like meningitis or by injuries, for example. Those parents will usually have no relevant genes to pass down. Even where there is a genetic cause on the part of both parents, there are many different recessive genes (and a few dominant genes) that CAN cause hearing loss. For the recessive genes, you have to have two copies of the SAME recessive gene to become deaf. If you have two DIFFERENT recessive genes, it won’t work. That’s probably why so many deaf/Deaf parents still end up with hearing kids.

    … I gather they’re still working on understanding the genetic roots of autism?

    I agree with you on the so-called “epidemic” thing. People sometimes talk of a so-called “epidemic” of attention deficit disorder too, but I think that’s the same issue — people just know more about how to recognize it today than they did even just 20 years ago. I’ve had ADD all along, since I was a little girl, but was not diagnosed until age 26. I didn’t suddenly “become” ADD then, I just had better awareness of how that label might apply to me, so I finally knew to go seeking an evaluation.

    One more question occurs to me. Normally, when I look at cross-disability organizations, it’s rare to see much inclusion of deaf/hard of hearing issues at all; and when they’re included, there often seems to be very little awareness that some (not all) Deaf people see themselves as members of a cultural community and often reject the whole idea that they are “disabled.” But, from the little bit I’ve seen of the autistic community so far in the past couple of months, there seems to be so much more awareness of the Deaf community and so much more of a tendency to capitalize the word Deaf! I wonder why that is … is it simply because some autistic people sign and so ended up learning more about the Deaf community through sign language classes or whatever? Or are autistic people just cooler? ;-)

  34. andreashettle: I dunno; perhaps it’s just that autistic people are more receptive to the idea of identifying with a group that’s “different”, since a lot of autistic folks — and Aspies in particular, I imagine, who might “pass” as eccentric neurotypicals or something, and aren’t as often subject to diagnoses of “mental retardation” or whatever’s going these days — are accustomed to being lumped in as socially “weird”. (Pardon all those quotations; I don’t particularly care to claim any of the words I’m enclosing in them.) As in, “I’ve always felt there was ‘something’ about me that didn’t jive with most of the people I encounter.” So being enthusiastic about meeting and forming alliances with and identifying with, if not necessarily getting along with, people who can relate to experiences that the majority of the population often can’t seems to be the natural course of things. Whereas people with other kinds of disabilities — and I’m thinking specifically now of people with physical (mobility, for example) disabilities — often have more concrete identities with the majority along the lines of “See, I think and feel just like you do; I just get around in a different way.” Auties often *don’t* think and feel like neurotypicals do, and that complicates things, ’cause it’s more difficult for the majority of the population to understand (“Why don’t you ever smile at me? I’m nice to *you*!”).

    And I’m sure the language thing is a big factor too. I definitely appreciate the nuances of sign as being as complex as any spoken language, and with distinct language comes distinct culture, as any historian can tell you. And I guess, if you’re asking why folks in this forum seem to be so well-learned in Deaf culture, maybe it’s because we think Deaf folks are cool. ; ) But I imagine it’s also ’cause lots of these folks are open-minded — in about the freest sense you can get and not just that supeficial “liberal” open-mindedness that is rooted in just as many stereotypes as closed-mindedness — and can grasp the validity of diverse culture, and are probably well-read on all sorts of different cultures as well.

    And as far as genetics goes, I honestly have no idea what the figures are; I’m just speculating and have absolutely no research or anything to validify what I’ve said. :P But it does seem to me that a lot of autistic couples have autistic kids. (Though it’s also possible that they’re just more in-tune to what an autistic kid looks like.) And yeah, since I’m of the belief that autism, unlike deafness, is not something you can pick up from illness or (contrary to crackbrained belief) doing too much LSD or something and *is* rooted in genetics, since it’s always about the way a person is hardwired and never about what “messed up” the wiring, then obviously two autistic parents would be more likely to produce an autistic kid than would a deaf couple in which one of the parents became deaf after birth. But that kind of logical math stuff aside, it seems to me (and again, I’m really just kinda making this up based on what I’ve noticed) that the genetic combination responsible for autistic hardwiring is a very dominant combination.

    It occurs to me, if you’re noticing that Deaf issues seem to be conspicuously absent from forums about disability issues, that perhaps the idea that many Deaf people do not identify with the disabled population, and may even take offense to being considered a part of the disabled population (though I personally think that taking offense at the idea of being disabled is a glaring insult to people who *do* identify as disabled), perhaps those forums are deliberately omitting discussion of Deaf issues with respect to that stance. Though I have noticed myself that Mary Johnson of Ragged Edge, for example, will fight like a bulldog on behalf of Deaf rights, while concurrently acknowledging that a lot of Deaf people don’t consider themselves disabled.

    And, you know, I think it would be really quite nice if more people were in the school of “Well, that’s the way Jamal has always been” rather than in the school of diagnosis. ‘Cause it ain’t no disease. : )

  35. (after this I’ll shut up for a while, I swear)

    I can’t remember what I wrote re: Aspies towards the top of my long comment (didn’t save it and it hasn’t posted yet; Amanda must be doing something besides sitting in front of her screen, waiting on bated breath to read all my glorious musings ;P), but it seems I had some clause disagreement going . . . I meant to suggest *not* that Aspies might relate to a distinct community any more than other Auties, but that Aspies might be more likely to *suspect* that there is “something different” about them but may not be able to put their finger on it, whereas Auties with more “profound” manifestations on the spectrum are probably more likely to *know*.

  36. Pingback: Language(s) and the Difficulty of Reading and Writing « h a r u m p h …

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