This is something that’s been on my mind lately. Not exactly bothering me, but niggling away in the background. I’m not even sure I believe in people being psychic, but like with most things, I try to stay open — especially when the evidence starts piling up.
Over time, little things have happened with my son that feel completely unbelievable. At first, it was one weird moment, then another, and…
TLC AUTISM* Channel Presents AUTISM: SENSORY ISSUES - AN INTRODUCTION & OVERVIEW*The Language & Culture of Autism Video Interview Series (An
Summary: SUMMARY: Subject, who is autistic, spoke three words for the first time at age nine. Still unable to speak for meaning, they began typing at age 12. Here she discusses how her vision works and sensory meltdowns.
This piece on interviewing autistics had me nodding along in self-recognition. It me.
I relate deeply with every point in the article, but this one acknowledges a fundamental aspect of my being that contributes to all other points:
While the autistic individual is interviewing, they will often be acutely self-aware and preoccupied by their own nervousness and internal coaching, and be…
TAPE 3/3, in its entirety, c. 2007, 2013, 2024 by S. A. Jones
From TLC AUTISM* YOUTUBE CHANNEL - c. 2024 TLCAustim.com*
The Language & Culture of Autism Video Interview Series
(An Ethnographic Investigation - A Case Study)
• Subject, who is autistic, spoke just three words for meaning at age nine. They began to type at age 12.
SUMMARY: Here "J." shows techniques that infants use to gain awareness of the mouth and making intention sounds, and how she learned to focus to the exclusion of other sensory input. Also more about ‘how’"J." sees, including her vision breaking up into ‘dots’ when there is movement.
• Excerpt at approx. 00:05:45 -
"...I wanted to talk, and then I had to figure out where, like, the talking sounds come from. They are in the direction of people’s heads, and then you have to figure out sort of where they’re coming from..."
• LIKE WHAT YOU READ AND SAW?
FREE print versions of all the video transcripts for this interview series with time-codes & notes, are available on this blog at www.insideautism.tumblr.com Scroll up and down to explore!
*TO LEARN MORE GO TO https://sites.google.com/view/tlcautism/home
LOCATION: ‘S.’s’ condo, bedroom, day. "J." and child, "N." ; S. A. Jones filming/interviewing. "J." is in bed. "N." is walking in and around the condo.
KEY: ~‘S.’= Sarah, interviewer/filming. ~‘J.’=Woman being interviewed. ~‘N.’=Woman’s child.
S: October, what is today, the 8th. And I’m with ***____*** and this is Sarah Armstrong Jones, taping and interviewing. And, um... ***___’s*** daughter, ***____*** . And the last thing that we were going to talk about was the mouth. How can a person [ WITH AUTISM ], who is having trouble being in their body, feel their mouth... And there are some things that you do. And I notice that your daughter has a pacifier in her mouth.
J: Yeah, this is so that she knows where her mouth is at. And I used to suck my thumb.
S: And also you talked about gum.
J: I chew gum. Well, I chew anything. –I chewed paper.
S: Mm-hm.
J: I had everything I had chewed on: pencils... chewed on everything. And I had my thumb in my mouth all the time.
S: And that was to know where your mouth was and to know when it was working, and be aware of it?
J: Yeah, I used to go; ‘Plt-, Pt-. Pt-. Pop-Pop-Pop-.’ I used to play with my mouth all the time, and it used to be annoying. I forgot, I wanted to use-- like, when I figured out where words came from. They didn’t come from their hands or their heads, or their ears or their eyes. I don’t know why I found that out. Before, I didn’t look at their mouths, because their mouth was like; ‘Bleh-deb-leh-deb-leh.’ [ SCRAMBLED SOUNDS ]
S: All those dots are moving around.
NOTE: ‘DOTS’ REFERS TO HOW "J." EXPERIENCES VISION. EVERYTHING BREAKS UP INTO DOTS WHEN IT (AN OBJECT, PERSON, ETC.) MOVES, OR WHEN "J." MOVES.
A: Yeah, you get really dizzy with the mouth, and the eyes are rolling...like, people’s eyes are monstrous-looking. [ 02:00 ] And if they stay still. I like how people look in snapshots. I don’t know why, on the T.V., it looks like... I could see faces. [ SINGS: ] ‘I could see clearly now, the rain--’
NOTE: "J." IS REFERRING TO HOW SHE SEES FACES; USUALLY JUST AN EYE THAT GETS REALLY BIG. BESIDES DIFFICULTY WITH HEARING WHILE SEEING, THE VISUAL DISTORTION –INCLUDING ANYTHING MOVING BREAKING UP INTO DOTS,-- IS ALSO WHY SHE DOES NOT LIKE TO LOOK AT FACES. THE EXCEPTION IS TO LOOK AT A COMPUTER OR TELEVISION SCREEN, WHERE "J." IS ABLE TO EXPERIENCE VISION SIMILAR TO HOW TYPICALS SEE, WHICH SHE DESCRIBES LATER IN THIS INTERVIEW, BELOW. [ --SEE ALSO OTHER INTERVIEWS AND CORRESPONDENSE FOR FURTHER DISCUSSION. ***NEED TO FIND/CITE.*** ]
S: If a speech therapist could have a T.V. screen pointing at them...
J: I don’t know.
S: [ CONT. ] --Would it be easier to watch the speech therapist on T.V.?
J: I don’t know; I used to really like the mouth a lot on the T.V.
S: Mm-hm. –But very hard to look at in real life.
J: Everything’s like...you know, like...it does all kinds of wiggly things, like gross. I don’t know why. It doesn’t look clear; sometimes it looks like it’s coming at you and going back in or sideways. And I think there was this video that distorted the faces or something, and I said; ‘Oh, yeah, --that’s how ugly people look all the time, on T.V. It was a music video, like: [ GESTURES, GASPS ] you know?
S: Mm-hm.
J: It was a music video where the eyes went: [ ENLARGES EYES ], and the mouth went: [ PULLS AT CHEEKS ], you know, like doctors-- you know, like they did something... and I said; ‘that’s how people look.’ You know, like really ugly, except it moves faster, that kind of stuff. I don’t know...it was like, I wanted to make sounds like other people?
S: Mm-hm...
J: Because I wanted to be part of the T.V. people. Because there were the T.V. people that were in the T.V. sets, and then there was the T.V. people that, was like, going on around you...
S: Mm-hm?
J: And sometimes if you did something, then... like, sometimes you would do something that would affect the T.V. people around you, or they did something that would affect you, kind of?
S: Yeah. [ 04:00 ]
J: So, you were like, you had a body, like you were a character!
S: Mm-hm.
NOTE: GOOD DESCRIPTION, BELOW, OF HOW ‘DIS-EMBODIED’ AND DISCONNECTED "J." WAS, PRE-SPEAKING AND TYPING FOR MEANING. THIS IS STILL SOMETHING SHE STRUGGLES WITH, INCLUDING HOW SHE COMES UP WITH ‘SCRIPTS’ TO BE ABLE TO CONVERSE WITH OTHER PEOPLE, AND ‘MANUFACTURES/ IMITATES’ INFLECTION IN HER SPEECH, ACTING 'AS IF' (MASKING). BEING ABLE TO SPEAK ‘OFF THE TOP OF HER HEAD,’ RARELY HAPPENS. [ SEE ALSO OTHER INTERVIEWS AND CORRESPONDENCE ABOUT THIS TOPIC. ***NEED TO FIND/CITE.*** ]
J: So, like, you had a body, like you had a role to play. And the T.V. people in the T.V. set, you don’t have a character with a role to play in it. But on the outside T.V. people, you have a character that you’re stuck playing, whether you want to or not.
S: Mm-hm.
NOTE: DUE TO ISSUES WITH ‘DIS-EMBODIMENT,’ "J." CONTINUES TO DESCRIBE HERSELF IN THE THIRD PERSON, BELOW, USING THE WORDS ‘CHARACTER,’ AND ‘YOU,’ INSTEAD OF ‘I’ OR ‘ME.’. [ SEE ALSO OTHER INTERVIEWS AND CORRESPONDENSE FOR A MORE DETAILED DISCUSSION ABOUT THIS TOPIC. ***NEED TO FIND/CITE.*** ]
J: That kind of stuff. And if that character’s hungry, then you’re going to feel hungry. -–That kind of stuff. So you could do happy things, like if you want to do things, like, you enjoyed before; you could say... You could go there again. That kind of stuff. I personally would have liked to have gone to, onto the T.V. –people on T.V., like go on ‘Indiana Jones,’ [ THE MOVIE ] like be there, like a little kid that went there with him, and they had fun.
S: Uh-huh. [ 05:00 ]
J: I like that better. Um, but it looks like I couldn’t get a ‘part’ there. So, anyway, I got a part here, and my character’s name is ***_____;*** that’s where I began, and that’s where I kind of end, whether I like it or not. And so I kind of have to get used to it, and, um, ...I wanted to talk because then I could control more of what my character did in this movie that I’m playing in. So I wanted to talk, and then I had to figure out where, like, the talking sounds come from. They are in the direction of people’s heads, and then you have to figure out sort of where they’re coming from, like are they from this thing up here: [ INDICATES EARS ], or here: [ INDICATES EYES ], or the nose, and... At first I thought it was the nose. [ 06:00 ] I don’t know why.
S: Well, it’s very close to the mouth.
J: Yeah, I thought it had to do with both the nose and the mouth. Like, I don’t know... anyhow, it was the mouth, so I figured out I had to look at the mouth. For the longest time, I watched the T.V., because on the T.V. you could see more clearly... the...
[ DEMONSTRATES SILENT MOUTHING ]
S: Without it all turning into dots or blurs and lines.
J: I don’t know, the dots were smaller, on the T.V.
S: Mm-hm...
J: Maybe that’s why on the computer screen... I don’t know, on the computer screen, all the dots are real small... I don’t know.
S: [ CONFIRMING FACT: ] There are real small dots on computer screens.
J: Yeah, don’t you see the dots? They are small.
S: Yeah, and there’s actually a vocabulary word [ FOR THAT ] --and you’ll see it in the [ PHOTOGRAPHS IN ] newspapers. --It’s called ‘pixelation.’
J: Yeah, they’re all the colors, but the dots are small. Now, real life is like that, but with bigger dots. And sometimes you can’t tell what the bigger dots are. [ 07:00 ]
S: And they’re way bigger...
J: Bigger and all over the place. Like, they’re not here, you know?
S: Mm-hm.
J: Like, on the T.V. screen, all the dots are moving, but in one space. And the T.V. people, on the outside of the world, their dots are moving, but they’re like moving all over. Like: [ GESTURES ‘HERE,’ – ‘HERE,’ ] the dots are following you. You know, like right now, my hand is moving, see? Like, all the dots, --shtook! First it just looks like a blur, and then it stands still. All of a sudden, like all the dots begin to disappear like dust; like sand between your fingers on the beach. And then all of the dots begin to settle down, and then you see where this begins and space ends.
S: Mm-hm...
J: All of a sudden, you see? You see, how...
S: So you need time to settle a vision.
J: Yeah. You see how... You don’t see that, Sarah, at all?
S: Not at all. [ 08:00 ]
J: Yeah, like...
S: I see... you know how you see your whole hand when it stops?
J: Yeah, I see my whole hand when it stops. Then, you see how it just settles.
S: I see your whole hand, all the time.
J: But... even when it’s... [ CHECKS HANDS ]
S: --Yes.
J: O.K... You see....
S: I don’t see a blur. At all.
J: A blur or color.
S: Nothing.
J: Nothing? And then all the dots... coming together.
S: I just see... The one thing I can do is look at something very closely, and everything around it blurs. And I can look at something far away, you know, and the close-up things blur.
J: Yeah, but that’s like that all the time. So that’s... it.
S: But what about the mouth?
J: The mouth?
S: Yeah.
J: The mouth on T.V., --the dots are smaller, and they’re not, like, all coming in all over the place. And you can control where it’s all coming in, and you can see where the words are all coming from, and like...
S: So how did you get aware of your own mouth? Like, what kind of things did you do, initially, to help your mouth be, ah... First, you had to figure out where the sound was coming from: it was the nose and the mouth. Then, you had your mouth—
J: First, I was just doing a lot of babbling.
NOTE: SEE SEPARATE INTERVIEW, WHERE "J." DESCRIBES IN GREAT DETAIL AND DEMONSTRATES ‘BABBLING’ EXERCISES. [ ***NEED TO FIND/CITE.*** ]
S: Mm-hm.
A: So there was just nonsensical sounds. And I came and I made a specific sound that sounded like something, I would try to repeat it, like, ‘what did I do with my mouth?’ Like, ‘b-b-b’: ‘Buh, buh, buhb.’ That’s like ‘b’, like ‘boy.’
S: Mm-hm.
J: You know, then it was like, how did I do that? That ‘boy’ sounded like that. But then there’s also, like, ‘oy! oy! oy!’ So it’s like, I used to go, ‘Oy!’ for ‘boy,’ [ TO HER CHILD, "N." ] --Yeah, I know, no boys here. [ 10:00 ] See? ‘Oy!,’ see? But I couldn’t get ‘oyyyy,’ like I could do the sound in my throat, ‘oyy,’ but it was-- That meant ‘boy,’ before, see?
S: But to do all of that, first, you had to know...
J: --But then I had to know where to get the ‘boy,’ the ‘b-o-oy’ sound.
S: And you had to know where in your mouth and your throat it [ THE SOUND ] was
coming from.
J: Yeah, and it had to work together, and um... That is so hard to make it work together, to make it, like, what you want it to be.
S: So right now, with Dolphin, you do these things like... she has a pacifier.
J: For her mouth.
S: She has… She does turning off and on eyes and ears.
J: Uh-huh.
S: And, um, she does blowing out and movement of words, silently with her lips.
J: Yeah.
S: And those are all things that hopefully are going to... more and more, as she gets better at them, start colliding.
J: Yeah, there it’s gonna crash-land. [ 11:00 ]
S: And then—
J: And then she’ll say, like, sometimes she’ll split something and say-- But I remember Dov didn’t move his mouth too much; so he’s not-- You have got to-- [ DEMONSTRATES STIMULATING MOUTH: ] put your hand on your mouth, and this is your mouth... And this is what you have to use, even if you don’t make a sound. Just touch your mouth like this: [ DEMONSTRATES ] just touch it a lot. And then just try to close it. Open. And try to squeeze your finger with your lips, because sometimes sound will come out of there by accident. And you blow, but feel it through your fingers. All the time I did that, like we could do different things, like, see, more up... but, like, twist it. And then you just keep blowing. And you’re making a sound, and it’s your sound! So you own that sound, and you’re making that sound, and you’re making it with [ INDICATES: ] this, and this.
S: So when you were practicing by yourself as a child--
J: --I had my hands in my mouth all the time.
S: Yeah, to help.
J: Oh! You put this, like this-- I forgot. [ DEMONSTRATES: ] This is to feel your tongue.
S: Mm-hm. So, three fingers inside.
J: I did that.
S: Yeah.
J: Like, when you try to figure out how to make an ‘s’ sound, you had to push your tongue up... [ DEMONSTRATES: ] like that... and puff. You had to go-- Put your hand in your mouth, --feel your tongue, and then push your tongue up, and then blow. [ DEMONSTRATES BLOWING WITH HANDS IN MOUTH. ] Before-- I did it before, it was crazy, because I didn’t know what I was doing. [ 13:30 ] But then, once you get, like, ‘fthss,’ then you do it. Like, every time you make one sound, you remember; ‘what did I do to make that sound?’ and then you backtrack ‘ch, ch, ch,’ [ MAKES REWIND SOUND ] and do ‘replay.’ I did that sound by doing this, [ BLOWS ] and then I did it again: [ BLOWS ]. Then you practice it, and so that’s my mouth, ...and you do it again: [ BLOWS ]. And this is when you’re, like, a baby because-- remember when you were a baby, and you were mouthing a lot?
S: Mm-hm. [ 14:00 ]
J: ...to know your mouth?
S: Oh, yeah!
J: You know that?
S: Yes!
J: But when our brains got disconnected, we have to go back to mouthing again.
S: So, yeah. You were talking about brains disconnecting from the body.
J: You go: [ BLOWS ] so you start mouthing all over again, like a baby, kind of? And you blow, and sometimes if you make sounds --if you do different fingers-- and then if you make a sound, stop. And do it again. See if you could repeat it. [ DEMONSTRATES: ] ‘Pthhhhh, fffwp’ And you keep playing, like mouthing, like a baby mouthing.
S: And if somebody—
J: [ STILL DEMONSTRATING: ] ‘Puhh! Puff! Pop!’ ‘Oh,’ ‘aye,’ --and different sounds, like ‘ehhhe-he-he-he,’ [ PANTS ], ...but if you go like this; ‘Pwufw,h pwufwh, pwufwh’ [ DEMONSTRATES COMBINING TAPPING LIPS WHILE PANTING ] it changes the sound. And if you do like this;‘Fthh, fthh,’ it makes a different sound. And if you go--. And, even if people don’t know what you’re doing, just keeps on doing it. Because, like, for the longest time, my mother didn’t like me with my hands in my mouth all of the time. Granted, you see, at the same time I was also smearing my shit on the walls--
N: MAKES DISTRESSED SOUNDS.
J: [ CONT. ] --so it was odd to get unsanitary, but I really didn’t care then, because it used to give an extra taste in my mouth; it used to wake up my tongue.
NOTE: THIS WAS A STRIKING STATEMENT, AS IT EXAMPLIFIES HOW SO MANY TIMES I HAD, WITH "J.", SEEN BEHAVIORS I HAD MIS-INTERPRETED AS ‘SOCIALLY INAPPROPRIATE’ AT BEST, AND ‘CRAZY’ AT WORST. IN FACT, UNABLE TO SPEAK OR TYPE, SHE HAD PERSISTED IN FINDING WAYS TO MAKE PROGRESS WITH GAINING COMMUNICATION SKILLS.
IN A SEPARATE INTERVIEW, "J." DESCRIBES HOW, WHEN WE WERE AT A DINNER PARTY, SHE HAD TAKEN FOOD OFF OF HER PLATE, USING HER HANDS, PUT IT ON THE TABLE CLOTH, AND EATEN IT FROM THERE, BECAUSE THE PLATE HAD A DECORATION THAT MADE IT IMPOSSIBLE TO DIFFERENTIATE THE FOOD FROM THE DESIGN. AT THE TIME I HAD THOUGHT HER BEHAVIOR WAS ‘PRIMATIVE.’ AS IT TURNED OUT, IT WAS, SIMPLY PUT, ‘DIFFERENT,’ AND WAS A PERFECTLY ‘REASONABLE’ WAY TO COPE WITH A SENSORILY DIFFICULT SITUATION.
WHAT STRUCK ME BOTH WITH THE SMEARING OF FECES AND THE INSTANCE OF TAKING FOOD OFF OF A PLATE, WAS THAT BOTH WERE LOGICAL PROBLEM-SOLVING STRATEGIES, ONCE I UNDERSTOOD "J.'s" NEEDS AND REASONING –WHICH UNFORTUNATELY, SHE HAD NO WAY TO EXPLAIN, WHEN SHE COULD NOT SPEAK OR TYPE, AND WHICH I –NOT KNOWING WHERE SHE WAS COMING FROM—COULD NOT EVEN THINK TO ASK HER ABOUT. I ONLY UNDERSTOOD THE ‘WHY’ OF HER BEHAVIORS, AS IN THIS INSTANCE and WITH FECES, WHEN IT CAME UP INADVERTENTLY DURING OUR INTERVIEWS.
THIS HAS MADE ME RE-EXAMINE HOW I INTERPRET OTHER AUTISTIC BEHAVIORS. FOR EXAMPLE, ACCORDING TO "J.", SHE DISENGAGES VISUALLY WHEN LISTENING, SOMETHING SOME OTHER AUTISTICS DO, THAT MANY TYPICALS FIND UNCOMFORTABLE. ‘TYPICALS’ FREQUENTLY MAKE A LOT OF EFFORT TO GET AUTISTICS TO MAKE EYE CONTACT. IN FACT, THIS IS OVERWHELMING FOR "J.". HER HEARING ‘SHUTS DOWN’ IF SHE USES HER EYES, MAKING SOCIAL ENGAGEMENT NEARLY IMPOSSIBLE. TO REMAIN CONNECTED, SHE MUST AVERT HER GAZE. ONCE THIS IS UNDERSTOOD, IT MAKES IT EASIER FOR TYPICALS TO BE BETTER ABLE TO HANDLE SOME PEOPLE WITH AUTISM NOT MAKING EYE CONTACT, AND TO REALIZE THAT THERE IS A PRACTICAL REASON WHY SOME AUTISTICS DO THIS.
S: So you could put something else on your fingers to put in your mouth...?
J: Yeah, but...
S: Anybody-- [ 16:00 ]
J: Yeah, but I liked that, because [ OF ] the taste; and the smell used to wake everything up. Like, I know my mom didn’t like when I played with my shit, but my shit had, like, all these smells that used to wake everything up. Oh! Oh-- Because it used to block out everything else; like, my shit used to stink.
S: Mm-hm.
J: You see? So when it stank, all the visuals took a background, and sound took a background. It’s like a slap in the face: [ DEMONSTRATES EFFECT ]. Like, all of a sudden... everything’s not coming in all at once. Because one thing is stronger than the others.
NOTE: MOST TYPICALS DO THIS AUTOMATICALLY ALL THE TIME. FOR EXAMPLE, WHEN SOMEONE IS LEARNING TO DRIVE, AT FIRST IT CAN BE OVERWHELMING BECAUSE THERE IS SO MUCH NEW INFORMATION AND EVERYTHING HAS ‘EQUAL VALUE.’ THEN GRADUALLY, TYPICALS ARE ABLE TO SORT OUT WHAT IS ‘MOST IMPORTANT’ ON THE DASH BOARD AND NOT TRY TO FOCUS ON EVERY INSTRUMENT AND AT THE SAME TIME, EVERY OTHER PART OF THE VEHICLE’S INTERIOR, PLUS EVERYTHING OUTSIDE. BY SMEARING FECES ON HER FACE, "J." WAS ABLE TO ‘SHUT OUT,’ OTHER SENSORY STIMULATION AND ‘FOCUS,’ INCLUDING BEING ABLE TO ‘FIND’ WHERE HER MOUTH AND NOSE WERE, TO BE ABLE TO PRACTICE BEGINING TO SPEAK FOR MEANING.
S: Yeah, that makes sense.
J: So... But you’re going to have problems with this because people really don’t like you playing with shit. I did that a long time, and I don’t recommend it because I think we could get diseases like this.
S: But you could use something else equally as textural and strong.
J: Yeah, I used to suck on things, like a carrot has ridges on it [ BUT NOT THE STRONG ODOR OF FECES ] . [ 17:00 ]
S: Mm-hmm.
J: And then you put in the tongue. –All of a sudden you realize you could do different things with the tongue. Like, the ridges on the carrot: you could see where the ridges are.
S: Mm-hm?
J: And you could...like, hit it. And--it’s getting to know your mouth.
S: Yeah.
J: But, you know how babies do this all the time?
S: Hmm-
J: Babies are always mouthing.
S: Yes.
J: And that’s what they do before they start making sounds... And then don’t feel bad if your sounds don’t make sense or anything, because... like, baby sounds don’t make sense when they first come out. They are just going, ‘Ptlll’ [BLOWING, MAKING SPUTTERING NOISES ] but you see, it’s like we have to start over, you know?
S: Right. Like Dolphin learning how to use her hands again.
NOTE: "J.'s" DAUGHTER, "N." HAS RETTS SYNDROME. HER HANDS ARE BENT AND HER FINGERS ARE FOLDED AND CONTORTED. "J." HAS WORKED ON MANY THERAPIES WITH "N." TO HELP HER RE-GAIN USE OF HER FINGERS AND HANDS. SEE OTHER INTERVIEWS AND B-ROLL FOR MORE DISCUSSION AND DEMONSTRATION OF THERAPIES. [ ***NEED TO FIND/CITE.*** ]
J: Yeah. And, the brain and the body has to start coordinating together all over again. [ 18:00 ] Because-- it’s like we had a stroke or something-- I don’t know how to explain this.
S: I think that’s an accurate explanation.
J: Like, when you’re a baby, you’re just getting to know your body. Like, your hands are all over the place, and you just keep going like this: [ FIDGETS ] until you-- your hand don’t belong to you, like, it’s all over and-- all that kind of stuff. And the mouth thing, they do that. So, then they do that right before they talk, see?
S: Mm-hm.
J: The mouthing [ DEMONSTRATES ] --and then, it’s like, we have to do that all over again. [ SMACKS LIPS. ] And then you start making the sounds. When you do that, all of a sudden, if you do it enough --everyday-- like babies do it everyday.
S: Mm-hm?
J: You start coordinating; like, trying to imitate the sounds around you with the --it’s a weird word-- with [ THE UPPER ] palate that we have now. [ 19:00 ]
S: Mm-hm.
J: And even if it doesn’t come out the way, like, the Dolphin, --when she says, ‘Yeah,’ she goes: ‘eh. Eha.’ And sometimes she goes, ‘Eaaa-ha.’ You know? Like she’s almost got that. Or sometimes she goes, ‘Ryeh!’ Like, she’ll just push it out, ‘Ryeh!’ like trying to make do with what you have.
S: Yeah.
J: And you try to imitate, like that sound, [ RESTRAINS LOWER LIP ] and you go ‘pff, pff,’ but you might have to do some switching here, too, because sometimes you get all caught up in how your mouth feels, and then you can’t hear [ POINTS TO EARS ] . And it’s hard to coordinate; so switch and go, see? Like, ‘pff, pff’ --do it over; repeat the sounds. Like, O.K., repeat, so see, like this movement, see? Like, first, --I tell this to the Dolphin: ‘fww, fww, fww’ [ ‘SILENT’ WHISTLE BLOWING ] see how it feels, first. Then you turn off the feeling, like you’re just listening, kind of? Like, if you’re listening, then you might forget what you’re doing. Um, so you go-- you start bringing your listening. Do the same movements, like you’re doing it repetitively. Like, five times: [ DEMONSTRATES ] ‘Fww, fww, fww, fww, fww.’ Then: like, you’re hearing it, part of the time. So now you know that ‘Fww, fww, fww, fww, fww’ will make the ‘fww’ sound. Because part of it is, like, ‘fww, fww-’ –doing--; and the other part of it is listening. So now you know that, like, even if you’re, like, switching from one to the other; ‘fww, fww,’ you already know that if you do that; ‘fww, fww,’ one way: it is going to come out a certain way. And you can do variations, like if you adjust your fingers different ways [ 21:00 ] like: [ PLUGS PURSED LIPS FOR WHISTLE EXERCISE AND FLIPS FINGERS LIKE AN ON AND OFF SWITCH] ‘ fww, fthhhhw, fww, fthhhhw’ like, it sounds different when it’s coming out from underneath your hand, and [ WHEN IT’S ] down. So, you start playing with it. But try to remember: If you make a sound that you like, --that sounds like something that you recognize-- try to remember how you did it. --
[ "N." IS PRACTICING, NEARBY. ]
A: [ CONT. ] --And if you don’t get it right again, you keep doing it until you get it again. --‘Fww, Fthhhw,’-- And, no, it’s not like talking yet, but this is what I tell the Dolphin, and I’m telling you, that if you try to go for the big picture all at once, we’re not gonna get nowhere, and we have to start in, like, the little areas-- and master little areas-- until we got one section. And then, when you have got one section, then you move on to another section. And then, you feel like, after a while, you don’t even realize how far you went. [ 22:00 ] But you have to perfect one little section first. You have to own one sound first. And if you could own one sound, where, like: you did not master it, if you can’t repeat it at another time. If you mastered this sound: ‘Fwww,’ where you know that when you wake up the next day, and you still, --you want to do it again-- and you can’t do it again, and you have to, like, organize all over, --then you don’t. If you hit that automatically, that you do that, ‘Fww!’ will make that sound, and you go ten minutes later, ‘I want to make that sound again,’ --
[ "N." EXHIBITS MASTERY. ]
J: [ CONT. ] --then you’ve mastered it. If you have to go all over again, --and hit or miss, all over again, --then you didn’t master it, yet. So you have to master one little section before you go to another section. [ 23:00 ] But you got to know your mouth the same way babies do, and you put your hands in your mouth, ...and your feet in your mouth, --I mean, like babies do. And that’s how babies learn how to talk, because that’s how we see them learn how to talk. They do all this: [ DEMONSTRATES AGAIN, RUNNING THROUGH SPITTING, MUSCULAR CONTROL, EXPERIMENTATION, AND SUCCESSFUL REPETITION OF SOUNDS ] ‘Llllp, Lp, Pt-pt-pt!’ ...and you see them [ BABIES ] always repeating them. That’s why they have to start with the people that are learning how to talk; not people who already know how to talk. Because they forgot how they got there. You have to go with the people that are learning how to talk--so you go to babies, and see what babies do. [ DEMONSTRATES. ] Because, you know, it’s not like the Dolphin isn’t like my nephew, who is one of those lucky people, who, like, didn’t say a word until he was, like, five, and then all of a sudden, he just spoke in complete sentences, like, out of the blue. I don’t know how he did this; I wish I knew. [ 24:00 ] And it’s, like, wasted talent, because he don’t care to talk. I don’t know why God punishes people, these days, like this; it don’t make sense. It’s like speech was almost wasted on this kid. Now, that almost never happens. So, --I think that’s even more weird than anything. So, you have to do it, like the little people learning. Because you’ll see a two-month-old, or a three-month-old, --where they at? Then you see what a four-month-old, or a five-month-old, --where they at? Then you see where a seven-month-old, --you see? It’s like, they’re the ones learning how to ___________________talk, and that’s how they start. So when you see a baby, they go, ‘fff’; they got their hands in their mouth [ DEMONSTRATES SUCKING ], and they got the pacifier in their mouth [ DEMONSTRATES SUCKING AGAIN ], and the thumb, --in the mouth-- Do you see my thumb? My thumb is swollen from thirty-nine years of sucking it, and at night I still suck it, and I have had my teeth twisted so they’re-- But I didn’t care if my teeth were twisted or if my thumb got swollen; I like the feel of my mouth. See? You feel the mouth, and then you twist it, and you roll your tongue over it--like a baby! And you all of a sudden go in little stages and the little baby starts, --the little people start, like--making more sounds, and then make, ‘Ha! Heu!’ And you see them make all kinds of sounds. And then you see them all surprised at the sounds that they’re making. --And then they get so happy, --that they make it more-- Like, the Dolphin got so happy, that she started making more. Like, ‘Dolphin! Make a sound, there--’ even if her sound isn’t perfect-- [ 26:00 ] it’s her sound, and she owns it-- And she made that sound when she wanted to make that sound. Even if it’s not, like, perfect. See? Stages, like-- They told her that she won’t use her hands ever again, and now she does, because she had to re-learn; she had to start all over again, --to know her body all over again. And then you see, like, a six-month- old. --So, you’re basically starting all over. But you’re not playing with your mouth; [ TALKING TO HER DAUGHTER: ] I see you didn’t play with your mouth that much. You have to play with your mouth like a baby plays. And that means we’re gonna be—
Inside Autism: How Some People with Autism See + Sensory Chaos...
WTjd100807fgh2o3.mov
See WORD TRANSCRIPT & Commentary below...
How sensory experiences differ for some people with Autism v. Typicals. Why Autistics prefer objects to people. Sensory issues and speech. Sensory Chaos.
10/08/2007, Tape 2/3, Clips f, g & h. TRT: 00:22:36 c. 2007, 2010, 2012 by S. A. Jones
Subject, who is on the Autism Spectrum, spoke three words for the first time at age nine. Still unable to speak for meaning, they began typing at age 12.
• SUMMARY: Sensory chaos v. Autism taking 'back seat'. Communication & emergence of awareness of a physical self connected to the mind. Examples of how word order differs for some autistics v. neuro-typicals. Subject discusses her sensory management and evolution from ‘before’ to ‘after’ typing and speaking for meaning, from being younger to older.
FREE Video Word Transcript with Notes here, below at: www.insideautism.tumblr.com c. 2007, 2024 by S.A. Jones [email protected]
*The Language and Culture of Autism c. 2007, 2024 by S. A. Jones. [email protected]
See WORD TRANSCRIPT with Notes, below, on this Tumblr Blog.
TLC Autism* Chaos v. Autism taking 'back seat' WTjd100807a-b1o3.doc
WORD TRANSCRIPT with Notes
See video at: http://youtu.be/KfdG2KNZABE
SUMMARY: Sensory Chaos v. Autism taking 'back seat'. Communication and emergence of individual self. Word order.
Examples of how the 'structure' of language differs for some autistics, v. 'typicals'.
Discussion about sensory evolution ‘before’ and ‘after’ typing and speaking for meaning) / younger vs. older.
Subject describes their ‘nightmare’/sensory chaos state.
10/08/2007 Tape 1/3, Clips a & b. TRT: 00:18:56 c. 2007, 2010, 2012 by S. A. Jones
*The Language and Culture of Autism (An Ethnographic Investigation - A Case Study)
My condo living-room area, day. ‘A.’ with daughter, ‘B.’; S. A. Jones filming/ interviewing, off camera.
KEY: ~S=Sarah. ~A=Woman being interviewed. ~B=Woman’s child.
NOTE: ‘A.’ WEARS DARK GLASSES AND SITS ON A COUCH, ROCKING AND GESTURING THROUGHOUT THE INTERVIEW. THERE IS BACKGROUND NOISE, INCLUDING ‘B.’ PANTING AND MAKING SOUNDS OFF SCREEN. INTERVIEWER [ SARAH ] IS OFF SCREEN.
S: --is 'J- H-'… [ CAMERA MOVES, IS SHAKY ] and her daughter 'N- H-' and um, we are gonna talk about talking, but I wanted to start by um, first with uh, 'J-' talking about how um, asking how it has been going this week with um, remembering back. And you used the term uh, ‘prison’ for when you were in autism ah, with no communication. [ 00:34 ] And um, are those memories to go back to how it was, easy, hard, or something else?
A: Hard.
S: And, um… is that because that time in your life was um, easy or hard, or was it because you have to go back to suddenly understanding that you were 'J-'? [ 01:03 ]
A: Um…
S: --or was it something else? [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: No. I just begin and end with 'J-' now, so going back into autism will not be good for me now.
NOTE: 'A.' OFTEN REFERS TO HERSELF IN THE THIRD PERSON [ v. FIRST PERSON ] .
S: Yeah. So to try to do something to maybe help others get out, though, we are going back and talking about your story, and then that is a lot of remembering that is, um, very difficult?
A: I don’t know why that— [ 01:30 ] or how I got out. I feel helpless in this because I don’t know how I could help in this. Ub, I almost feel like perhaps the people who are talking now, like who are still like locked into, locked in autism like say ‘B-’[?], Sue Rubin or, or Jamie, [ AT SYRACUSE INSTITUTE, 2007 ] [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUND. [ OVERLAP ] [ 02:00 ]
CAMERA IS SHAKY.
A: [ CONT. ] who are st— like in autism, but talking, somewhat.
S: [ OFF SCREEN ] Mm-hm.
CAMERA SLOWLY ZOOMS IN ON ‘A.’s’ FACE.
NOTE: ‘A.’ HAS A DIFFERENT WORD STRUCTURE [ SEE BELOW ], THAN DO TYPICALS. I HAVE SEEN THIS IN THE WRITING OF OTHER AUTISTICS, AND THERE WAS A STUDY IN ITALY OF NON-VERBAL AUTISTICS THAT SHOWED THAT THEY HAD A DIFFERENT WORD STRUCTURE FROM TYPICALS IN THEIR LANGUAGE AS WELL. [ SEE PAPER I WROTE ON THIS TUMBLR BLOG FOR MORE INFORMATION. ]
A: Because I don’t have a lot of my senses in um, constant on –like they are still, like so– [ OVERLAP ]
CAMERA JERKS.
B: [ OFF SCREEN ] MAKES SOUNDS. [ OVERLAP ]
A: --but much like sss— like a shadow of what they were before when I grow. I was young uh, like young child-person, [ 02:30 ] see?
B: [ OFF SCREEN ] MAKES SOUND.
A: Annnd… if they were strong, like they were eh, as young perssson, child-person, and, um, I don’t think I’ll be able to be / do like what I do now.
S: [ OFF SCREEN ] Mm-hm. [ OVERLAP, UNINTELLIGBLE ] So it’s important to keep that making progress and keep things either the same or going forward?
A: Mm, no-- That’s not what I saying. [ 03:00 ] I’m saying it is that my senses alleviated— [ OVERLAP ]
S: Yes. [ OVERLAP ]
A: I go, if I remember back to a time, things that be like a discomfort now, or that I could manage to, now… navigate through now, [ CAMERA SHAKY ] are not things I would not have been able to do so when I— as a younger child-person. I don’t know why some of [ 03:29 ] the things alleviate because other people are know of, are still dealing with it on a like, same as they were as a child-person as a, as an adult. And… [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: [ CONT. ] I am grateful that autism released it’s hold on me to an extent where I could— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUNDS. [ OVERLAP ]
A: [ CONT. ] --like have it as a constant reminder, [ 04:00 ] like a shadow, but that I am master of it, and it’s not master of my self, see?
NOTE: ‘A.’ IS CHEWING ON HER THUMB. WHEN WE FIRST MET, [ SUMMER, 2007 ] ONE OF THE THINGS THAT CLUED ME IN, THAT ‘A.’ MIGHT BE ON THE AUTISM SPECTRUM, WAS THAT SHE COMMENTED MATTER-OF-FACTLY HOW MUCH HER THUMB HURT BECAUSE SHE WAS CONSTANTLY BITING IT.
S: Mm-hm. And that would be things like how now you can do things like if you need to stim, in your mind. Most of the time you can do that? [ OVERLAP ]
A: - Yes. [ OVERLAP ]
S: --Instead of where typical people or normals might get scared? [ OVERLAP ]
A: I can’t do that all the time, but I can, yes, do that somewhat, but not too much. [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: [ CONT. ] Just no, but OCD [ Obsessive Compulsive Disorder ] and other eh, things I could do [ 04:31 ] in my head, in my imagination of a universe and I could move from one to the other um… somewhat like…
S: [ OFF SCREEN ] Like— [ OVERLAP ]
A: --because autism’s not as strong a grip on myself as it was once before. So I could shift gears more easy [ 05:00 ] or go in and out of more easy sort of, like, like autism forgot it left the door open and I could like go— [ OVERLAP ]
LOUD OFF-SCREEN SOUND. CAMERA SHAKY.
A: [ CONT. ] --in and out, annnd…
B: [ OFF SCREEN ] MAKES SOUNDS.
A: [ CONT. ] not… say, with ease, but I could go in and out, where once I could not go out.
S: Now— [ OVERLAPPING… ] like today we were um, having breakfast [ 05:31 ] and we went to a restaurant you’ve been to many times—
[WE WENT TO A DELI WHERE THE SEATING HAD BEEN RE-CONFIGURED, SINCE THE LAST TIME ‘A.’ HAD BEEN THERE.]
A: Yes.
S: --but they had rearranged all the tables, [ OVERLAP ]
A: Yes. [ OVERLAP ]
S: --in one room? So… um, eh-it, when you were more auti— in your autism state, ih, eh, what would you have done, and what did you do differently today to deal with it? [ OVERLAP ]
A: Um, I did things, like when I was younger?
S: Yes.
A: Then, it would be a place where I knew it, [ 06:00 ] foreign.
S: Mm-hm.
A: And this would cause anxiety, because it, it will be [ CAMERA SHAKY ] a chaos. So even if it’s the same place, the… edges are not where they are so you don’t know where you’re at there, or what is happening there, or where you just landed on the moon, like the moon almost, see? That’s how everything feels. Like brand new, but like not [ 06:30 ] just like brand new but like foreign like I just landed on Mars, or so. And this will be like— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUND, PANTS. [ OVERLAP ]
A: [ CONT. ] --and would normally cause great panic, see? And now, I have where— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUND, PANTS. [ OVERLAP ]
A: [ CONT. ] --I get that panic. [ CAMERA SHAKY ] And then I have— but I see that now, and I see like two things. Like— [ SCRAPING SOUND OFF SCREEN ]
B: [ OFF SCREEN ] MAKES SOUND, PANTS. [ OVERLAP ]
A: --I see all the blurs, and that dis-con-certing feeling that, of, of being transported somewhere completely different. And… at the same time I also have the sssense it, of it being a familiar place [ CAMERA SHAKY ] just shifting about a little bit. Both of it happens all at once. [ 07:29 ]
S: So when that, when you go to a place where you’re expectations for it to be one way and then it’s changed around, if you can’t do a big stim in public what— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUNDS. [ OVERLAP ]
S: --do you do instead? You do something inside your head?
A: I could do that now.
S: And what is that because— [ OVERLAP ]
A: --because I just rearrange it in my head, but if I was still locked in autism I won’t be doing that.
S: What would you be doing if you were locked in autism?
A: It would be a [ 08:01 ] foreign thing. A foreign environment. [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: It will be complete chaos. And then, there is not much I can do about that.
S: And how would you, if it is complete chaos, and you were locked in autism, what would you do to cope, or to calm yourself? …If you could. What would you try to do? [ OVERLAP ]
A: Anything that I can. But… [ OVERLAP ]
S: [ OFF SCREEN ] Would it be— [ OVERLAP ] [ 08:30 ]
A: —Anything. You could become like a nightmare to you— [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: --if there are changes because— it’s hard to explain. I don’t know. [ OVERLAP ]
S: What is the ‘nightmare’ for a typical person, to know what the nightmare is? --Is that changing things has— [ OVERLAP ]
A: Like if you’re in a nightmare,
S: [ OFF SCREEN ] Mm-hm. [ OVERLAP ]
A: --or you’re in a dream, and nothing in that dream is doing what it was supposed to be doing, see? For example, birds are [ 09:00 ] swimming and water is floating, and there’s a train going through your living room, and all of this is happening and you’re in a dream, see? Now think of it as not being a dream, but like living in Saturain [??] all the time. Like you’re living everyday in a Salvador Dali painting.
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: But that that is [ 09:30 ] everyday, almost.
S: And what, what, is there anything you can do when you’re living in the nightmare to –it, does sleep-ing help? Does closing your eyes help? Does d’anything help? [ OVERLAP ]
A: Yeah. I did close my eyes. I do whatever I can. Or I focus on small things to calm myself a little bit. Or to make sense of little things little by little by little by little where of course everything changes so as much as you organize [ 10:00 ] to make sense of what’s happening, you know, everything shifts and change happens, and then you’re starting all over again from scratch, and it’s such a hard— because once you’re organizing and organizing everything changes all over again, and then you have to start all over, so you’re never done with just this part because something else is coming in, and that’s some-thing new that you have to [ 10:30 ] sort through and organize and… And it never ends.
S: So, like as an example, um, when you came the other day—I’m gonna turn camera towards the candies—
CAMERA PANS SCREEN RIGHT, TOO CANDIES ON COFFEE TABLE.
S: --on the coffee table, I, had seen that you had made a really beautiful uh, pattern with them. And when I knew you might be coming back, [ 11:00 ] I thought, maybe I should leave them the same way.
A: [ OFF SCREEN ] They didn’t though. They were messy.
S: There was some people here, who they came to clean, and they moved some things. But um, in a perfect world the best, like if they are this way now, and you leave and if, if you were to come back here, like I was, if I was staying here more days, would it be important to have these, leave these alone like this? --To help you feel more comfortable here? [ 11:30 ]
A: [ OFF SCREEN ] I will notice, but it doesn’t not cause the great things that I already— [ OVERLAP ]
S: But if I were to move around furniture a lot— [ LIKE WHAT HAD HAPPENED THAT MORNING WHEN WE WENT TO THE DELI AND THE TABLES AND CHAIRS HAD BEEN REARRANGED. ] [ OVERLAP ]
A: Yes.
S: That would be nuts.
A: Yes. I would not like you moving the furniture, no.
S: And what would you have to do to um, help yourself? [ OVERLAP ]
A: I would want to move the furniture back. I would have to reintroduce myself to the environment. [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: Like it was a brand new ff— room.
S: So, that must be something that happens a lot, [ 12:00 ] in your life.
A: All the time.
S: Yeah. And— [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
S: [ CONT. ] Was a big part of becoming free from autism being able to find ways to cope with all the change that is— Typical or normal people would uh, ub, un, would unwittingly do that all the time and not maybe realize how— [ OVERLAP ] --upsetting it is. Um… but, it happens all the time— [ OVERLAP ]
A: Sss-- [ OVERLAP ]
S: You must have had to do things to get used to it. [ 12:31 ] …Somehow. Or else you would still be in that autism prison.
A: Y’ It don’t seem to understand. Once I was asthmatic. Then my lungs got stronger and I don’t have asthma anymore
S: Mm-hm.
A: It wasn’t anything I did to quote, it was just something that [ SIGHS ] – LIKE AUTISM FELL ASLEEP and when it [ 12:59 ] and when it collected all of its collections it forgot me. Ssssssss [ OVERLAP ]
S: That is a very insightful thing to say. [ OVERLAP ]
A: --ssssso I don’t know if I— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUND. [ OVERLAP ]
A: [ CONT. ] --can help because I never really felt like it was something I learned to cope from, but that autism fell asleep on me, and I wandered away in the night. [ 13:30 ] And— [ OVERLAP ]
S: It also sounds like you did something important because you said that when you, when it put it away, I think you —maybe I’m saying it wrong, but you said something like it put away all of the collections?
A: It put away its collections, but it forgot me.
NOTE: TO HER CREDIT, 'A.' HAS SPENT YEARS DEVELOPING STRATEGIES TO HELP HER COPE WITH SENSORY CHAOS, AND ALSO TO MASTER SELECTIVE SENSORY CONTROL. MANY INTERVIEWS DESCRIBE WHAT SHE HAS 'PIONEERED', PARTICULARLY IN RELATION TO DEVELOPING THE ABILITY TO SPEAK FOR MEANING, BEING ABLE TO 'TURN ON' AND 'TURN OFF' HEARING AND VISION, FOR EXAMPLE.
S: Yeah, because it, maybe it had enough with the collections to not have to keep being with you.
A: No, it’s always with me.
S: O.K.
A: But like a shadow, nipping on my heels. [ 14:00 ]
S: Instead of… all it, like, around you from top to bottom, inside and out? [ OVERLAP ]
A: Instead of being wrapped up tight in its fist, it’s— [ OVERLAP ]
S: [ OFF SCREEN ] Mm-hm. [ OVERLAP ]
A: --just snaps at my heels— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUNDS. [ OVERLAP ]
A: [ CONT. ] --as I run two steps ahead of it.
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
S: That’s um, makes me think of—
A: It’s a difference, with living with a form of autism all the time, and living kind in it. [ 14:30 ] It’s a difference when it no longer rules you… then when it did. Because I don’t remember then, now.
S: It sounds like um, when you’ve talked before, that communication was a big part of helping to get out of the ‘fist’, and having it more 'nipping at your heels' instead of you being inside the ‘fist’. [ 15:00 ] Because with communication— [ OVERLAP ]
A: I--it was part of everything.
S: And with communication you became a separate self. [ OVERLAP ]
A: Yes… [ OVERLAP ]
S: --sometimes.
A: And it… yes, so sometimes…
‘A.’ STRETCHES, LEANS FORWARD AND BITES HER THUMB.
S: And did you become more or the same of yourself when you went from typing to mm— to intentional speech? [ OVERLAP ]
A: I became more of myself. This is when loneliness came.
NOTE: SEE "PRE-COMMUNICATION GHOSTS" + "EMERGENCE OF SELF" Parts 1 & 2 FOR MORE ABOUT 'A.'s' TRANSITION/TRANSFORMATION VIA COMMUNICATION [ I.E., SPEAKING FOR MEANING AND TYPING ] FROM BEING 'GHOST-LIKE' TO BECOMING AN EXISTING, INDIVIDUAL, SEPARATE 'SELF'.
S: [ OFF SCREEN ] And was it even, was it the same, or more, [ 15:31 ] when intentional speech became part of your communication?
A: INTENTIONAL SPEECH WAS A WAY OF INTEGRATING INTO THIS WORLD, ONCE I INTEGRATED INTO MYSELF.
S: Mm-hm. So— [ OVERLAP ]
A: AUTISM IS NOT A NICE PLACE TO STAY IN, WHEN YOU… WHEN YOU [ 16:00 ] BEGIN AND END WITH ONE PERSON. [ OVERLAP ]
B: [ OFF SCREEN ] PANTS, MAKES SOUNDS, PANTS. [ OVERLAP ]
A: It is a big, beautiful place, but— [ OVERLAP ]
B: [ OFF SCREEN ] MAKES SOUND, PANTS. [ OVERLAP ]
A: --I don’t know why, that when it’s becomes like a prison, then um… It [ I.E., AUTISM ] became a prison when I became a person. Like not, don’t [ 16:30 ] I was always a person, but I just became one person, the 'J-' person is where I began and ended, and then—
S: Yes.
A: So this is when for autism, became a prison.
S: And then the way to come out was through speech? Or was typing also helpful?
A: The will, the desire…
B: [ OFF SCREEN ] PANTS LOUDLY. [ OVERLAP ]
A: [ CONT. ] --to adjust in the world, see?
S: Mm-hm. [ 16:59 ]
A: Because… then you’re slipping like into like one world in two worlds, and one world you don’t care too much about happens— [ OVERLAP ]
LOUD CRASHING SOUND OFF SCREEN. ‘A.’ TURNS TO HER RIGHT, IN THE DIRECTION OF THE SOUND.
A: [ WITH WIDE OPEN MOUTH ] Bwahh!
S: Dolphin, do you want your drink?
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
S: [ OFF SCREEN ] Let me see. I’ll help. [ OVERLAP ]
A: Don’t know… We got to go soon… N’yeah, n’yep, n’yep. [ 17:31 ] Yeah.
‘A.’ MOVES HER MOUTH SILENTLY.
S: [ OFF SCREEN, TO ‘B.’: ] There you go. Now we’ll put it back on the table. [ TO ‘A.’: ] Um, we will. I’m keeping very careful track of time. [ TO ‘B.’:] O.K.— [ TO ‘A.’: ] So, in autism, w’—uh you mah— you came out to
communicate with the— [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
S: [ CONT. ] --world in stages. You had some very brief intentional speech at nine [ YEARS OLD ]. Then at twelve you began typing. [ 18:00 ] So on the one hand you’re more defining or learning about self, but— [ OVERLAP ]
A: [ UNITELLIGBLE, OVERLAP ]
S: [ CONT. ] --I’ve [?? ] typing um...
A: Typing more.
S: --typing more and, and make, and everybody understands that all of a sudden that the typing is because you’re intelligent. It’s not just a lett— a game or a pattern, it’s also communication. [ OVERLAP ]
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: --the typing… made me begin and end with 'J-' more, and more, and more, and more, and more. [ 18:35 ]
S: And what about speech?
A: Speech did not do that for me, for a long time.
S: [ OFF SCREEN ] What did speech do, at first?
B: [ OFF SCREEN ] PANTS. [ OVERLAP ]
A: Not much.
S: [ OFF SCREEN ] Was that just more, uh, when you were repeating words?
A: Yes. But I only had that ah—
TAPE SEGMENT(S) STOP ABRUPTLY, MID-SENTENCE.
END OF THESE SEGMENTS 1 & 2 (A & B). TRT: 00:18:56.
LANGUAGE v. SPEAKING FOR MEANING + SPEECH + TYPING
*The Language & Culture of Autism Video Interview Series (An Ethnographic Investigation - A Case Study)
10/05/2007, Tape 2/3, CLIPS 'g-h-i' TRT: 00:10:44 https://youtu.be/HYLNxKwEJyA c. 2007, 2024 S. A. Jones, [email protected]
Subject, who is on the Autism Spectrum, spoke three words for meaning at age nine. Unable to continue to speak for meaning, they began to type at age 12.
SUMMARY: Answering factual v. feeling questions. Difficulty answering questions about immediate past. Inability to initiate verbally/typing, or to vocalize thoughts (wrong words come out).
FREE Video Word Transcript with Notes HERE, BELOW at: www.insideautism.tumblr.com c. 2007, 2024 S. A. Jones ______________________________________________________________
• VIDEO TRANSCRIPT HIGHLIGHTS (at START OF VIDEO: 00:00:00)
S: [ SO AT FIRST, ] was typing for having a conversation with somebody?
A: No. S: Was typing for getting information or— asking questions?
A: ...it was— [ 00:09 ] —mathematics. Just like what— was what. Like, like—
S: —So someone might ask, ‘How are you?’ [ 00:19 ] Or, ‘Are you happy?’ Or, ‘What is—'
A: —Too vague. [ 00:23 ]
S: I know, but I’m saying in typing eh, they might say something like, ‘What is your name…’
A: —I didn’t do it right, too much. [ 00:29 ] Et— em— It had to be answers that can’t change.
*Coming Later in 2025 the website: TLCAutism.com
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