Yes, my language is comprehensible to others.

Standard

I did that video “In My Language” that I posted recently. I’ve gotten some interesting responses.

Several people said their autistic children (and one non-autistic sibling) wanted to watch it over and over again. One of them had a son who never hums at all, but hummed the tune from the video all day after he watched it. Others hummed along too. The parents described their children’s reactions as interested, mesmerized, and transfixed.

This is a common reaction between autistic people, I’ve noticed. We do have ways of communicating with things around us that are mutually comprehensible for many of us (not all of us, and not all the same things are comprehensible, there seem to be groupings in that regard). Our interests and our reactions are not random, purposeless, or useless, and are certainly not ugly things to be hidden away or trained out of.

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.

23 responses »

  1. I downloaded the video so that I could watch it at home with sound (I don’t have internet at home; I use the library. I really appreciate the subtitles you put on things because that means I can understand it at the library with the sound off), and I also have some problems understanding speech (I can’t watch movies without subtitles, too much visual input to hear and understand what they’re saying), so subtitles are wonderful.

    Your voice is very pretty, it reminded me of Persian chanting, without the Persian words, especially the tune and the pauses and stops in it, it’s hard to explain, but it wasn’t an unusual sound to me. I’m sure YouTube has some Persian chanting, but not being able to listen to it at the library makes it difficult to find one and say “yes, that’s it”. Anyway, I liked it. I’m NT (well, not sure how “typical” I am, being mentally ill, but I’m not on the autistic spectrum), and I didn’t know that books had a smell, so I tried smelling some of my books at home and it was a delightful experience. They smell good and now I know. Thank you. :)

    The movements didn’t seem pointless to me either. Different than the movements I make when interacting with the world, but not pointless or random or anything like that. It sort of reminds me of the way I like to trace my fingers along walls when I’m walking down the street. I like the texture and feel of them and I especially like ragged, slightly bumpy textures. Smooth glossy textures like glass or plastic are yucky. I’m aware this isn’t normal behaviour, and I try not to do it too much, and I know that most people would think “ew, dirty city walls”, but I like the feeling of the walls under my fingers. It’s not purposeless or random either. I do it because I like textures and I’m interacting with the texture of the wall with my fingers.

  2. I loved watching that video. There was so much in it that I like to do as well. I’ve not had a chance to show my oldest son it yet (he’s autistic) but I’ll do so later and see what he makes of it.

  3. Both of my autistic boys loved your video. As soon as I turned it on they both heard the humming, and came running. They stood there, and watched the whole thing (my 3 yr old doesn’t usually watch anything for that long)while humming, and flapping their hands in excitement. My 5 yr old was excited about the part where you look into the camera out of the corner of your eyes, he looked back at the computer in the same way, as that’s how he often looks at things.

  4. I watcha lot of things like that. I remember when watching Sue Rubin’s water (and your water) wanting to watch that part over and over again. Ceiling fans and fans in general have been a long time favorite. Oh, and the necklace. Anything on a string. Anything lined up like circle stickers on a paper. I for some reason am “drawn” to. I’m so “self checking” now due to societal socialization that I only rarely get to take time out to give myself this kind of comfort. Not to be putting a whole lot into mumbo jumbo, I have seen a mystic here or there that could “awaken” me but they were far from trying to cure or heal me, they were just trying to find their own “ground state” of sorts. I thus think it a little linked but that’s far from being “common” with your average wicca person wanting to sit in a yogi style and “ground”. It’s more what I’ve seen in travels to other countries…esp Asia and from some people in India. I don’t want to compare this to zen because it’s a different subject but I feel absolutely good or relaxed like I’ve just done zen after I do something like watch or do this.

  5. When my autistic daughter (age 4) watched this, first she hummed along with you, then started repeating the word “idea, idea, idea”.

    In the past I had mistakenly thought her use of the word “idea” was “meaningless” echolalia, but I see that I am the one who fails to understand her meaning.

  6. Until I’d read Pthalo’s comment, I hadn’t remembered about the odd looks I’ve gotten about how books smell. I’m trying to collect one series in a particular edition (hard to find and expensive when I do find it) because I love the smell of the books in that edition! My husband looked at me oddly but figured that aside from the small extra drain on the book budget, it was reasonably harmless, and didn’t try to discourage me.

    Sometimes my older son will sniff a book before he opens it. He’s past trying to tear pages (his younger sister is the only real page-tearer left, and if we don’t encourage her with wrapping paper on presents, she doesn’t do it all that much anymore), and has sniffed my paperbacks lying around and then flipped through them.

  7. Firstly, thank you for posting that video.
    Secondly, I make no claim to understand completely what it means to you. But your language did affect me on a deeper level than just curiosity. The humming seemed full of purpose and not mere “noises”. It truly made me happy to experience it.
    This has certainly opened my mind to places where I was not sure existed. Thank you thank you thank you.

  8. You probably know that your YouTube vid. was placed on Metafilter. The most intriguing comment I saw there was someone who said they went to college with you, posted the link to said college, and said they had once called emergency services for you – because you had “self-medicated” for several months with LSD. You have no obligation to respond to charges, or questions, from starngers, but as an interestd observer I’d be interested in your response.

    Fascinating subject. I worked for about a decade, in the 80s and 90s, as a direct care aide in a group home for “DD” asdults and had a lot of interaction with autisc people. It wasn’t my nature to judge it up or down – I just found it fascinating and, how to put it – honest movement. (I guess I did judge it “up”.)

    Thanks for the time
    LT

  9. Thom — read the tail end of my disclaimer on assumptions (actually it might be good to read the whole thing, because it gets into some other things he’s probably mentioned as well). I was given LSD precisely because for a couple years before I ever tried it, people were already assuming I was on it. My reactions were not typical (some included normalizing my perceptions more), I used it for a time, and I stopped. There have been no lasting effects on my perception, and the “you act like you’re on acid” accusation (without which I’d never have tried it) can be confirmed by several people who knew me long before that guy did (although he was well aware of it as well, having initially assumed I was a long-time user of the stuff when I’d never touched it).

    He called emergency services after I had already stopped using it (in July of that year, I believe), and had already been in an institution once before that by then (for reasons that did not have to do with drugs that time either). It was because I was self-harming, not because I was on drugs.

    On LSD, by contrast, with a few rare exceptions, I was calmer, more capable of comprehending people’s language, and with less sensory overload (but certain cognitive distortions existed that are part of what caused me to stop taking it). I rarely hallucinated and only hallucinated a few very limited things. If the perceptual effects of LSD had lingered, I would look far less autistic than I do. (They used to do some rather horrible experiments on autistic children with LSD that appear to confirm this, by the way.)

    I’ve actually expressed on my old webpage, though, a desire not to be contacted directly or indirectly by him, which he’s well aware of given that he contacted the webmaster demanding that my no-contact notice be taken down — and contacted her within minutes of it being put up. Another woman used to have a similar statement on her webpage, but it’s gone now. My statement is still there, and still stands.

  10. ballastexistenz – Here’s the thing: I don’t quite know how to take this, based on my experience with autistic people, but I’m happy to learn.

    In my experience people who were profoundly-enough autistic to exhibit the dancing movements, the hands in the water, the rustling objects for sound – all of that, were also profoundly developmentally disabled. They couldn’t turn it on and offf and sure as hell couldn’t write about it. And there’s no way conceivable way they could have gotten LSD. I just don’t know what to make of you, frankly.

    My confusion must be about the propensity for the movement among the autistic and how it correlates to develomental disablement.

    LT

  11. Yeah it probably is. I know a number of autistic people (Kathy Grant comes vividly to mind) who move and/or moved like this and who are actually quite verbal, some of them even with Asperger labels instead of autistic.

    I can’t turn being autistic on and off either, I’m autistic 24/7, but my abilities do fluctuate, and that’s not an intentional thing.

    It’s quite conceivable that you’ve never been exposed to me, or Kathy, or a number of other people, before, but we do in fact exist, all over the place.

    There are also a number of people just as you described, who were considered profoundly developmentally disabled, who then learned to speak and/or type later on, and showed more awareness than you might have been giving them credit for. (Tito Mukhopadhyay comes to mind, so does Sue Rubin.)

    Go to the Autism National Committee conference and you’ll meet dozens of us (people who look very obviously autistic and can either speak or type). You might meet some at Autreat too. You might find this History of ANI interesting.

    In my case, I have had a fairly fluctuating course of development, including a massive loss of skills at puberty that was totally beyond my control, but that is not particularly unheard of among autistic people. I ended up having to do the movements and other things more and more in order to avoid increasing sensory overload. I know a number of people that applies to, as well.

    But, no, I don’t turn it off and on. I have uneven skills, I have fluctuating skills, but boy it would be nice at times to have skills that actually obeyed me, something I cannot claim. I’m just who I am, whatever mess that is to actually explain to people at times because it’s more complicated than most people like to think about. My appearance and actions are my appearance and actions, not a claim of being “profoundly autistic” (those are words other people put on it, and then expect my entire history to conform to a stereotype based on those words, just as if they expect a “high functioning autistic” stereotype they are likely to encounter disappointment as well).

    I really wish at times that I did conform to a stereotype (any one), because then I’d get less confused responses. :-/

  12. Oh, by the way, also, I’ve extended an invitation for a long time for people who wonder if I exist and such, to actually come out and meet me. You can see the agency I get services from in the last paper on my Official Papers and Such page, and if you ever wanted to meet me there, I could meet you with my case manager and/or my everyday support staff, as well.

  13. I don’t normally write about this anywhere public, but in the interest of helping break down the preponderance of assumptions regarding autistic people, I will do so now. My experience re. LSD was remarkably similar to what Amanda describes. Basically, I was accused of being on it so frequently that (following over a year of intensive autistic-perseverative research) that I needed to see what it was all about for myself.

    My experimentation was also very minimal and I did not keep it up chronically, and haven’t touched anything like that in many years now. But it is possible for an autistic person who looks “autistic enough” to be accused of being on LSD even when they are not to end up obtaining the stuff somehow. In my case, it had to do with the fact that some of the only people in high school who would tolerate my presence were those interested in psychedelics — many of them seemed to have interests in things like consciousness research and synesthesia and the kinds of music I liked at the time (e.g., Pink Floyd, particularly the very early stuff).

    And though some of these people ended up in somewhat sad situations (usually as a result of getting involved in addictive, non-psychedelic drugs or alcohol), they did tend to be rather open-minded and accepting, and interested in learning about stuff that I was also interested in, so they were a natural group for me to associate with…though I never really participated in the party element, it did mean I was in proximity to people who had access to things like LSD. Just because the mainstream social group might shun autistic people, that doesn’t mean that the “fringe” groups will as well.

    I don’t look as obviously autistic as Amanda does most of the time, but there are times when I know I do, and it is definitely not anything that can be “turned on and off” voluntarily.

  14. Thanks zilari, yes that’s a lot of what it was like.

    Except in my group there were also some people who liked to get me stoned (which made me fearful) and then try to freak me out and stuff, rather than being open-minded and accepting.

    And yeah, I’m a synaesthete too. (Color-number, spatial-number, color-letter, touch-sound, color-sound, shape-sound, etc.)

  15. FYI, a person who’s consistently known me longer than anyone but family commented on the MF thread too.

    She mentioned twirling… it’s odd, as I’ve gotten older, I can’t twirl anymore without horrible nausea. I used to be able to twirl indefinitely with very little dizziness or nausea. Wonder how that changed.

  16. Hey there…I shared this link with a number of colleagues of mine who are facilitators, and who work with groups where we are trying to get to deep levles of presencing in order to truly engage in conversations that matter. We talk a lot, sort of flippantly perhaps, about being in conversation with the world, but this video takes that thought to an entirely new level for us.

    Everyone’s responses are interesting and I’m still trying to find a way to explain why I find this video so touching.

    It’s interesting isn’t it how your work opens us up. That has been the common comment from most everyone who has seen this video, that they feel opened by it.

    We are opened by presence, and I wonder if one of the things that you teach us in this video is what presence really is. We have no idea what you are saying or doing in the first part, and the words in the second part are not spoken by your voice, by rather by a speech synthesizer. All of the trappings of the communication strategies most of us take for granted are gone, replaced instead by pure presence. Having your words overlay your images (which are ways you see the world and yourself) gives me a far deeper insight into the nature of self and being. I feel like your presence alone is an invitation to go even deeper into embodying that state, and that at some level, beyond both my language and yours, we could find ourselves occupying the same place and meeting there, knowing that about each other.

    I’m fascinated.

    And then of course there were other comments about accessibility which reminds me that we are burdened with assumptions about the world and the access that everyone has to it, and moreover, we lose much by not designing ways of hosting the kind of wisdom that you bring.

    THanks for sharing this.

  17. “deep levels of presencing”
    “opened by presence”

    What does it mean?
    Is it a Zen thing, like awareness and enlightenment?

  18. Our deepest presence, who we truly are. When we show up like that, in truth and honesty and with that level of integrity, people open up and we can have authentic communication.

    Amanda has embodied what I am saying perfectly. In this video she is completely present, all there. And when we encounter something like that, we ourselves open wide. Look at the response around the web this week to “in my language…” People are truly and deeply moved by it, and I think it has a lot to do with being open to hearing what Amadna is saying in HER language. The first part of the video is actually NOT incomprehensible to me – it communicates to me on a much deeper level. I can understand it. I can see this woman in conversation with the world and I can sense something of what that conversation is about.

    Long answer, but in a way it’s a Zen thing.

  19. Wow–that video was amazing. I especially liked the way that you pointed out how our society draws disctinctions between which types of language are relevant and which are not. Sadly, a lot of the ideas you framed were notions I’d never, ever entertained before. Thank you so much for challenging me. I love your site.

  20. Hi, I’m so impressed and interested by your Youtube postings I wanted to comment. The link to your latest was posted on the Asperger community of LiveJournal today. I have a ‘profoundly’ autistic niece in New Zealand who very sadly does not have your ability to communicate through typing, but watching your videos made me realise just how much is going on in her head without people being aware of it.

    Thank you very much for posting on Youtube. I think you are doing a very valuable work here, of giving a voice to the ‘people in the lines’. And I also think your singing is lovely.

  21. Wow, that video was absolutely beautiful. Your vocalizing was both soothing and mesmerizing. What’s interesting though, is the reaction of my six-month old son. Right now he is transistioning from the cooing stage of language to the babbling stage. We have always noticed that he is very intent in his vocalizing, seemingly trying to communicate. When we talk to him he often looks perplexed. It’s as if we are cross-talking at each other in two different languages. While the video was playing, he stopped his playing and vocalizing; he instead looked at the screen with absolute focus. He lay absolutely motionless watching the video and seemed to be listening with rapt attention. At one point he looked over at me and briefly vocalized before turning back to the screen, as if he were commenting on what you were saying.

  22. language and perception are altered in our world, sometimes it really is just a way to make life more difficult, but once in awhile, it can be a beautiful thing that opens up a pathway not known to “normal” people. please don’t be offened by my use of “normal people”, but i don’t have a good term to seperate one world from the other, and i think people understand what i mean.

    to not really understand the subtle nature of most people, to not know when they are kidding or not, to completely blow interpretation of minor body language, and to be perceived as being retarded or something is not a fun thing and makes life difficult in many ways.

    but to sit out by the edge of the forest on a warm summer night, and not just hear the crickets and peepers, but to hear a single point of intensity of sound in the crickets song, move about like a wave at a baseball game, to the rhythem of a embedded group song is a beautiful thing. people can tell something is not consistent in the sound, and if you point it out, they sorta can hear the intensity thing for a moment, but they really can’t listen to the song.

    on the same warm summer night, to walk down to the pipeline break that seperates the forest, and look up towards the mountain, watching the beauty of a river of fireflys slowly flow down like a river, you can see a pattern in the light, not too unlike the crickets. it is very hard to point out to people.

    to listen to the sound of all the neighbors dogs bark, and over the course of an hour, know a pattern is there. the barking overlaps, with random exceptions, but they are reacting to something moving along a path. and the next day, to find the bear tracks, and know now you can listen to the movement of a bear along the forest edge behind the residential area, is beautiful, but you really can’t explain to people. after all, is it just more crazy talk. you learn to just not tell people such things anymore.

    they are the normal ones, remember?

  23. and yes, I do understand about people thinking you are on drugs, even from childhood. and yes, without realizing it, you can gravitate to the crowd that does them. somehow i am blessed, i never so much as tried hard drugs, but that ever changing crowd in differnt times and places, accepting my pressence without my having to partake, has given me a horrific view of that world. in my life i have watched the life fade from the eyes to two people who overdosed, and seen countless lives ruined, going from king/queen of the world to legal problems and life failures, and even suicide attempts. it is like a curse to me, and never fails to break my heart.

    i also do understand about the ability of some drugs to give the temporary appearance of “normal”. the only drug i’ve even taken, pot, does this to me. to be able to not appear retarded, to have greater control of outbusts, to be able to successfully be able to mess with other people in a fun way with body language, are all terrribly addicting things to themselves. but nobody is immune to the general effects of being stoned and the longer range effects of becoming a stoner. you learn if you smoke a joint, you will be stoned for a couple of hours, but appear normal for half a day. by finding very mild stuff, eating it instead of smoking it, and good timing, you can get through critical job interview and other important events that otherwise would be very difficult. but as i grow older, i gave it up, and i don’t even want to be “normal” anymore. the price to pay in being a stoner and losing my intuitive sharpness is too great.

    besides, i have learned normal people are really boring, repetative in their own ways, and though play nicey-nice so much they truly have a general mean streak that is a cause of so much hurt in the world.

    I don’t know of others who read this are religous or not, but a great man once said ” be like these little children who come to me, and the earth shall inherit peace ”

    i don’t want to be normal anymore, ever, just glad i have learned better how to fake it, without any drug.

Leave a Reply

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

WordPress.com Logo

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

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s