TLC Autism: The Language and Culture of Autism*. Autistic perspectives of the world. The world explained according to autism. The culture of autism. Autistic perception. Autism explained by autistics who have learned to communicate by typing and speaking for meaning. A Case Study. An Ethnographic Investigation.
Subject, who is on the Autism Spectrum, spoke three words for meaning for the first time at age nine. Unable to continue to speak for meaning, they began to type at age 12.
SUMMARY: Subject continues lesson: reading story** out loud and speech, engaging a non-verbal, low-motor skill pupil, fostering inclusion and communication skills. ___________________________________________________________ • VIDEO TRANSCRIPT HIGHLIGHTS (at approx. 00:__:__)
**Island of the Blue Dolphin
FREE printable TRANSCRIPT with Notes HERE, BELOW at www.insideautism.tumblr.com c. 2007, 2024 by S. A. Jones, [email protected] *Coming Later in 2025 the website: TLCAutism.com
#autistic #autistic communication #The Language and Culture of Autism #TLC Autism #autistic ethnography #autistic ethnographic investigation #autistic home school participation/inclusion with non-verbal student #autistic perception #autistic point of view #autistic POV #high-functioning autistic teacher with low-functioning autistic student #autistic home schooling #autistic pointing #low-functioning autism and teaching #autism special education #neuro diversity #autistic learning #autistic engagement #autistic joint attention #autism speaking for meaning #neuro-divergence
TLC AUTISM* Channel Presents *The Language & Culture of Autism Video Interview Series
READING + INCLUSION: HOME SCHOOLING - Part 3/3
SEE WORD TRANSCRIPT with Notes below, on this Tumblr blog.
(An Ethnographic Investigation - A Case Study)
10/07/2007, Tape ¾, CLIPS ‘g-h-i-j’ TRT: 00:21:09 c. 2007, 2025 S. A. Jones, [email protected]
Subject, who is autistic, spoke three words for meaning for the first time at age nine. Unable to continue to speak for meaning, they began to type at age 12.
_SUMMARY: Subject continues lesson: reading story out loud and speech, engaging a non-verbal, low-motor skill pupil, fostering inclusion and communication skills. _____________________________________________________ VIDEO TRANSCRIPT HIGHLIGHTS
_**Island of the Blue Dolphin _
FREE printable TRANSCRIPT with Notes HERE, BELOW on this Tumblr Blog www.tlcautism.tumblr.com_ c. 2007, 2025 by S. A. Jones, [email protected] __ _
*CHECK OUT THE TLC AUTISM WEBSITE AT: https://sites.google.com/view/tlcautism/home
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. ________________________________________________________ *The Language & Culture of Autism Video Interview Series (An Ethnographic Investigation - A Case Study)
Tape 1/1. TRT: 00:10:27 c. 2008, 2025 by S. A. Jones
TO LEARN MORE CHECK OUT THE TLC AUTISM WEBSITE AT: https://sites.google.com/view/tlcautism/home
TLC Autism* YouTube Channel Presents *The Language and Culture of Autism
SENSORY ISSUES - AN INTRODUCTION AND OVERVIEW to this video series - An ethnographic investigation - A case study.
VIDEO WORD TRANSCRIPT
with Notes by S. A. Jones c. 2025
Introduction to "J." and her Sensory Issues –WORD TRANSCRIPT
TAPE 1/1 TRT: 00:10:27 _____________________________________________________________
*The Language & Culture of Autism Video Interview Series Check Out the Website: https://sites.google.com/view/tlcautism/home
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.
VIDEO TRANSCRIPT HIGHLIGHTS (at 00:00:27)
J: I know I said something when I was nine and it was because I was thinking, ‘Leave me alone,’ and, the words just came out of nowhere.
S: Yeah.
J: And it was shocking, [ 00:44 ] because it was like telekinesis or magic because you thought something and then all of a something the sound came, and you know the sound came ‘cause the vibration came, and the sound actually kinda matched what you were thinking [ 01:04 ] and then like everybody freeze and you can tell because the kind of-- all their bones stiffen up or they like, stop—
[ sound fades out, unintelligible ]
N: [ 01:16 ] Three years later J. H. began to type and started to speak again for meaning.
NOTE: This is edited footage from several interviews, with narrative in the form of written captions.
Mostly at condo lvgrm area, day, near Davie, FL. "J" with "B." (daughter); S. A. Jones filming/interviewing.
KEY: ~S=Sarah. ~ "J"=Woman being interviewed (sometimes wearing dark glasses). ~ "B"=Woman’s child. ~ "N"=Written Narrative & Titles, etc. per screen.
Note: TV sound is ‘on’, off-screen. "J.". often requested it be turned on during our interviews. Also, "B." often pants and makes sounds while we are talking.
N: J. H. Autism Interviews: Awareness & Sensory Issues
N: by S. A. Jones c. 2008
N: Introduction: J. H. was diagnosed with autism as a child. [ 00:19 ]
N: At age 9, she spoke for the first time. [ 00:27 ]
J: I know I said something when I was nine and it was because I was thinking, ‘Leave me alone,’ and, the words just came out of nowhere.
S: Yeah.
J: And it was shocking, [ 00:44 ] because it was like telekinesis or magic because you thought something and then all of a something the sound came, and you know the sound came ‘cause the vibration came, and the sound actually kinda matched what you were thinking [ 01:04 ] and then like everybody freeze and you can tell because the kind of-- all their bones stiffen up or they like, stop—
[ sound fades out, unintelligible ]
N: [ 01:16 ] Three years later J. H. began to type and started to speak again for meaning.
N: [ 01:20 ] Part I: Early Perception of Self in relation to others.
J: An’ sometimes they can even underst—they understand that you understand what’s happening but you n’ many times it’s like you’re not even there, but like in a movie theatre you get caught up with what’s going on [ 01:40 ] without even that. You know you are not part of the- what’s the movie on the screen.
S: And, but what you do doesn’t effect what’s on the screen, either. [ 01:50
J: Yeah! What you do don’t effect what’s on the screen. An’ except by accident or it, if it’s happens like, like by accident, see? But most of the time you experience life like you’re sitting on the movie theatre watching it all happen around you.
NOTE: Dark screen. [ 02:09 ] Fade up to next clip with sound and light.
J: …Indian Jones on the movie screen turning to you in the audience and saying, ‘What do YOU think about that, Sarah?’ All of a sudden you just have a sense of YOUR-self as part of what’s happening, see?
S: And it would be shocking if [ OVERLAP ] --if Indiana Jones turned to me and I was watching the movie [ 02:34 ] [ OVERLAP ]
J: Yes- [ OVERLAP ]
S: And he said, ‘Sarah!’ at first I wouldn’t even think he was talking to me.
J: Because you have already gotten used to the fact that you were something separate of what was going on around you, but after a while if Indiana Jones keeps stopping and saying, ‘Sarah! What do you think? What do you think?’ And you may not know how to like, interact [ 02:56 ] with everybody on the screen, or talk to everybody on the screen, or even tell him correctly what’s going on, but at least all of a sudden you realize that somehow you’re in there with him because Indiana Jones all of a sudden says, ‘Sarah, Sarah. What do you think?’ see? [ 03:15 ]
S: And I wouldn’t even think how to get his attention. I wouldn’t even think when I’m watching the movie I should get anybody’s atten-- [ OVERLAP ]
J: Exactly. [ OVERLAP ]
S: --tion.
J: Exactly this be so. Because you’re already—You’re associating it as something happening without you. [ FADE TO BLACK. ] [ 03:30 ]
N: Part II: Sensory Chaos
J: We have to ss-- find a strategy bec- to ignore somethings. Even if you have to close your eyes to do it. To stop the information from coming in. [ OVERLAP ]
S: Mm-hm.
J: Because you’re never gonna organize the information if more information keeps coming in. [ Makes ‘ssshhh’ sound] Because then, it’s like a dam [ 03:56 ] broke and everything’s coming at you. And then it’s like, it’s like, ‘Sssss.’ Owww- one thousand seagulls screaming in your head. And it’s like all these slaps in your face going all at once. And then, an’ like, ‘Didah-didah-oooh!’ [Makes more high-pitched inarticulate sounds. ] –All of that coming in like, [Makes more high-pitched inarticulate sounds. ] And then everything, all that, like all the sides coming in [ 04:24 ] all at once. It’s like the colors hitting you, like a hit in the face and light and darkness and the contrast like, ‘Ffft! Boom! Boom!’ Almost like, like your eyes almost like burr-ning; like nauseous feeling because it’s all hitting you-- [ FADE TO BLACK. ] [ 04:46 ]
N: Part III: People as Sensory Chaos: Why J. H. prefers stationary objects.
J: Ignore the people. Because these—they are just chaos. Because they are moving all over the place. Y’get’ y’—There’s nothing stationary about, like, people unless you’re in a nursing home and people are waiting to die. [ 05:10 ] [ OVERLAP ]
S: Mm-hm.
J: They-- You have to—Like people are, are, they are too much. They are one, moving all over the place. Then they’re making sounds. They are just, they—you have to drop the—just go for something stationary. Like, you have to focus on something stationary that will keep still and let you know where the environment is. Like where something ends or begins. [ 05:40 ] [ OVERLAP ]
S: Mm-hm.
B: Making panting and loud breathing sounds off camera as A. continues to talk.
J: Like you need to know where something ends and begins and then your relation to it, see? [ OVERLAP ]
S: Yeah- [ OVERLAP ]
J: Now, you could never do that with people. And that was a problem before, when I was a kid, because I-- that was when they began talking autism because I was always chasing objects rather than people, and I wasn’t interested in people as much-- [ OVERLAP ]
S: Mm-hm. [ OVERLAP
J: -when I was younger. And they said that and they didn’t wanna—they some—I don’t know, they mentioned that one time. [ 06:09 ]
S: But the people were chaos and the objects were more calming and stable.
J: Well, the objects are like, if you want to know where you’re at.
[ OVERLAP]
S: Yeah. -- [ OVERLAP ]
J: -or where something begins or ends, an object will stay in one place. [ OVERLAP ]
S: So you can figure it out-- [ OVERLAP ]
J: Yeah. I mean unless you’re moving everything’s moving, that kind of stuff. Everything’s gonna move if you move. [ FADE OUT TO BLACK. ]
N: [ 06:37 ] Part IV: Visual Chaos & Strategies for differentiating objects.
N: Lower third of screen, over ‘A.’ talking:
J. H. is Recalling A Visual Challenge [ 06:34 ]
J: Like when we went to Henry’s house…
N: Lower third of screen, over ‘A.’ talking:
At A Dinner At A Friend’s Home.
S: Yeah.
J: And she put, like, grapes on a Nemo plate. All—I knew that I saw—Like first I just saw a bunch of colors, bright colors. [ 07:00 ]
S: Yeah-
J: And it just looked like red-- It didn’t even look like a plate; just looked like a-bright colors. Then all of a sudden the bright colors just sort of like settled down and then there were edges. Like different colors and then they had the edges. And then you could see like, it would end in a round shape. [ 07:18 ]
N: Caption appears on lower third of screen as ‘A.’ continues to talk:
J. H. Has A 10-Year-Old Daughter Diagnosed With Rett’s Syndrome & Autism.
J: Then when the colors b--you know, settle down more, you real--, I realized ‘Oh, that’s like, Nemo.’ [ 07:24 ] Like Nemo from the Walt Disney movie?
S: Yeah.
J: And there was the fish from Nemo, see?
S: And then when did you see food on the plate? After that?
J: Like if I saw that there was like pictures. Like other colors that did not correlate with the image.
S: Of the fish-- [ OVERLAP ]
J: Yeah. The fish. [ OVERLAP ]
S: --the meal.
J: Yeah. Like there were like, weird things—I picked-- I touched it. There was something on it. Well, of course I rationalized that if she put a plate, that [ 07:56 ] it turned out to be a plate, that there would--may be something on it. So I looked and I ss—I realized it was a grape after I took it out of its environment which was the-- [ OVERLAP… unintelligible ] many-colored plate.
S: Mm-hm. [ OVERLAP ]
J: So I knew that the Dolphin would not be able to see the grapes on the plate because she won’t be able to separate the plate; the grapes [ 08:18 ] from the plate.
S: So then a person could think, um, like a nor-- typical person could see a child like um, Nicollette or Lily and go, ‘Oh, they have bad motor skills, that’s why they can’t pick it up off the plate.’ But it could also be because the plate— [OVERLAP ]
J: Yes-- [ OVERLAP ]
S: --has such a fancy artwork that-- [ OVERLAP ]
J: --Yes. It gets lost on the plate. [ 08:41 ] And then if it gets lost on the plate then you can’t separate the food from the plate.
S: Yes, so-- [ OVERLAP ]
J: It just becomes it’s like a mix of colors all together. So that’s why I took the grapes off the plate, and the, the—You see, Sarah, they had a tablecloth and it was white.
S: Yes, I remember.
J: See? So the grapes on the tablecloth… You could see that they were grapes on white tablecloth. See there were grapes. So that way the Dolphin could look, aim ‘cause she—you don’t—you’ll see that she looks first. And then she aim, and then she grabs. [ 09:23 ] But sh-she’s—when she’s grabbing she’s not using her eyes at the same time. You’ll see that. [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
J: I don’t know if you see that? ‘Cause she’ll grab after. Like soon after so she could grab it.
S: So she looks to get the picture and estimate-- [ OVERLAP ]
J: Yea-ss. She looks to get the picture, and then she estimates where she has to aim to grab it.
S: Mm-hm. [ 09:43 ]
J: Because she hasn’t perfected that part quite yet. But you’ll see her do that. I mean she’ll better and better af-ter. But that was why I took it off the plate. But if th—my plates are all like one color- [ OVERLAP ]
S: Mm-hm. [ 09:58 ] [ OVERLAP ]
J: See? Where the food begins, and the plate begins, and you could see where, like, the plate ends, and the food begins. [ 10:09 ]
[ SCREEN FADES TO BLACK. ]
N: J. H. Continues To Perfect Her Ability To Speak For Meaning.
N: [ 10:17 ] She Was 39 Years Old At The Time Of These Interviews.
N: [ 10:22 ] The End.
TAPE STOPS AT 00:10:27.
FYI: THERE IS A SLIGHTLY LONGER VERSION OF THIS TAPE [ 00:10:39 ], TO ALLOW FOR MORE TIME TO READ THE CAPTIONS/NARRATION.
END OF THIS TAPE.
The Language & Culture of Autism by S. A. Jones
Check Out the Website: https://sites.google.com/view/tlcautism/home
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 video comes from a 1930 television program that explains how Helen Keller was able to learn to communicate. Anne Sullivan, Helen's teacher, demonstrates her techniques that got Helen to speak.
I’m interning at the Solidarity Center, whose mission is: “to help build a global labor movement by strengthening the economic and political power of workers around the world through effective, independent, and democratic unions.”
Love this blog! Very engaging. FYI: your host put the bananas in a basket because if they had stayed in the brown bag, they would have ripened and turned brown very quickly.
c. 2007, 2013 by S. A. Jones TAPE 3/3, in its entirety, TRT: 00:26:46
SEE WORD TRANSCRIPT BELOW, ON THIS BLOG SITE.
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 demonstrates techniques that infants use to gain awareness of the mouth and making intentional 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.
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—
SOCIAL INCLUSION, HOW SOME AUTISTICS SEE, TOILETING
*The Language and Culture of Autism Video Interview Series (A Case Study An Ethnographic Investigation)
WTjd100807a-e2o3.doc, c. 2007, 2024 by S. A. Jones, [email protected]
Read WORD TRANSCRIPT with Notes BELOW, on this Tumblr Blog.
• Subject, who is autistic, spoke three words for meaning at age nine. Unable to continue to speak for meaning, they began typing at age 12.
SUMMARY: Social Inclusion + at 00:07:30 how ‘A.’s’ vision works; her challenges. At 00:13:25 coping strategies. At 00:23:00 learning to use the toilet. At 00:31:55 ‘A.’ recalls visual challenges eating; finding food on her plate.
• VIDEO TRANSCRIPT HIGHLIGHTS at approx. 00:32:00
A: ...at first all I saw was a bunch of colors, like bright colors. ...and it didn’t even look like a plate, just bright colors. Then all of a sudden, the bright colors sort of like, settled down, and then there were edges. ... And you see they would end in a round shape. ...
S: And then when did you see food on the plate? After that? ...
A: ...Yeah, ...I touched it and there was something on it. Well, of course I rationalized that if [ the hostess ] put down a plate, if it turned out to be a plate, then there may be something on it. [ 33:00 ] So I looked at it, I realized it was grapes –after I took it out of its environment, which was a many-colored plate. ... ____________________________________________________________ See FREE Printable VIDEO TRANSCRIPT & NOTES BELOW, HERE at www.insideautism.tumblr.com
Coming Later in 2024-2025: TLCAutism.com --the website!
TLC Autism* Channel Presents SOCIAL INCLUSION, VISION, TOILETING
VIDEO WORD TRANSCRIPT with Notes c. 2007, 2024 by S.A. Jones
*The Language & Culture of Autism Video Interview Series (An Ethnographic Investigation - A Case Study)
10/08/2007 - TAPE 2/3, Clips ‘a-e’, TRT: 00:39:55, WTjd100807a-e2o3.doc - c. 2007, 2024 by S. A. Jones
SEE VIDEO AT: http://youtu.be/Pko9s5gSlbM
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: Social Inclusion + at 00:07:30 how 'A.'s' vision works; her challenges. At 00:13:25 coping strategies. At 00:23:00 learning to use the toilet. At 00:31:55 ‘A.’ recalls visual challenges eating; finding food on her plate.
• VIDEO TRANSCRIPT HIGHLIGHTS (at approx. 00:32:00):
A: ...at first all I saw was a bunch of colors, like bright colors. ...and it didn’t even look like a plate, just bright colors. Then all of a sudden, the bright colors sort of like, settled down, and then there were edges. ... And you see they would end in a round shape. ...
S: And then when did you see food on the plate? After that? ...
A: ...Yeah, ...I touched it and there was something on it. Well, of course I rationalized that if [ the hostess ] put down a plate, if it turned out to be a plate, then there may be something on it. [ 33:00 ] So I looked at it, I realized it was grapes –after I took it out of its environment, which was a many-colored plate. ... ____________________________________________________________ See YOUTUBE VIDEO LINK HERE, ABOVE, at www.insideautism.tumblr.com
*Coming Later in 2024-2025: TLCAutism.com --the website!
#The Language and Culture of Autism #TLC Autism #autism #autism coping strategies #autism vision #autism seeing blind #autism culture #autism language #autism ethnography #autism ethnographic investigation #autism social inclusion #autistic
LOCATION: ‘S.’s’ condo, day. ‘A.’ and child ‘B.’; S. A. Jones filming/interviewing. ‘A.’ is in bed. ‘B.’ is walking in and out of the room.
KEY: ~‘S.’= Sarah, interviewer/filming. ~‘A.’=Woman being interviewed. ~‘B.’=Woman’s child.
NOTE: Bold print, bold print in italics, and block print with the word “NOTE:” in bold/italics deems content especially significant, per Sarah.
[ *POSSIBLE WORD/S MISSING, BELOW?* ]
S: O.K. So it is Monday, October 8th, and this is Sarah Armstrong Jones speaking, and I am taping and interviewing ‘J—' and her daughter, ‘D—/N—‘. And ‘J—' is talking —has been just explaining two things to me, that will help a lot of ‘Normals, —or ‘Typical’ people, be more supportive and understanding *XXXX??? some of the dynamics of autism. ‘J—', you were just telling— you were trying to help me understand how someone with autism can be less cut off, and you were using an analogy of the ‘Indiana Jones’ movie. Can you explain that?
A: Yeah, I don’t know much about other people with their different versions... well, there’s different versions. I just know what I do, like with the ‘D—‘ [ 'A.'s' NICK-NAME FOR HER DAUGHTER ] , because I see her drift, like myself, and I remember what I did.
S: Yeah.
A: So I do it with her. So, you could experience life like if you watch in a movie theater. And you may see like an ‘Indiana Jones’ movie, see?
S: Mm-hm.
A: And you know what’s going on, and you understand what’s going on. And you may even like some characters more than other characters, and you may even foresee some things that might happen, and have hopes and dreams for them, and enjoy the movie—?
S: Yeah.
A. —but you’re not part of the movie.
S: No, I’m just sitting in the audience, watching.
A: Yes, you’re in the audience. And people can tell that you’re watching and listening. Sometimes they can even understand that you understand what’s happening— which— many times it’s like you’re not even there. But, like when in the movie theater, you get so caught up with what’s going on without you, that you know you’re not part of what’s the movie on the screen. [ 02:00 ]
S: —And that what you do doesn’t affect what goes on, on the screen either.
A: Yeah, what you do don’t affect what’s on the screen, except by accident— or, if it happens, it’s like...by accident, see. But most of the time you experience life like you’re sitting on the movie theater, watching it all happen around you.
S: And then you were telling me an example— tell me again how you were— tell me.
[ *POSSIBLE WORD/S MISSING, BELOW?* ]
A: With the ‘D—’, I know that she gets that drifting, where she understands what’s happening, and the only thing— to make her part— *XXXX??? bring her in the screen. I tell her, talk to her, I bring the attention to her. Like: ‘D—’, what do you think of that?’ It would be sort of like, Indiana Jones, on the movie screen, turning to you in the audience, and saying, ‘What do YOU think about that, Sarah?’ All of a sudden you just have a sense of yourself —as part of what’s happening, see?
S: And it would be shocking. If Indiana Jones turned to me, and I was watching the movie, and he said, ‘Sarah’. At first I wouldn’t even think he was talking to me.
A: Because you already have gotten used to the fact that you are something separate from what was going on around you. But after a while, if Indiana Jones kept stopping and saying, ‘Sarah! What do you think? What do you think?’ And you may not know how to, like, interact with everybody on the screen, or talk to everybody on the screen, or even tell him correctly what’s going on, but at least all of a sudden you realize, that somehow, you’re in there with him, because Indiana Jones, all of a sudden said, ‘Sarah! Sarah, what do you think?’ See?
S: And I wouldn’t even think how to get his attention. I wouldn’t even think, when I’m watching a movie, that I should get anybody’s attention. [ 04:00 ]
A: Exactly, this. Because you’re already associating it as something happening without you. You don’t go and watch T.V. and say to, you know, Joey or Chandler on ‘Friends,’ ‘Hey, you guys. I’m right here,’ because they won’t see you or hear you; you just don’t do that. You just watch T.V. like a spectator, see?
S: And we also, because— you talked about, I think I’m using the right word—‘telekinesis’? How, just because you think something in your mind, it doesn’t happen.
A: Yes.
S: No matter how much I thought in my mind, or even tried to walk close to the T.V. or use my arms or anything, nobody on the T.V., like Chandler, would notice me.
A: Yes.
S: So, I would be ‘invisible’ to the people in the movie, and I would be ‘invisible’ to people on a T.V. show.
A: Yes. But there are occurrences that happen, where there are things that you do that affect your environment, and they affect you, somewhat. Then you start to realize that you’re in there, somewhat. That’s how I realized that— because, sometimes the environment affected me, and sometimes I did something that would affect the environment. It was like, ‘Hmm—’ You know, like that song, “Things that make you go, ‘Hmm—’”
S: Yeah. [ LAUGHS ]
A: See, like that. That is like, emphasis I was trying to use, like ‘speech within speech’ —even though ‘Hmm’ is not a word, I think it should be in a dictionary, I think, in my opinion— Okay, back to the point, now. So what I do to remind the ‘D—’, to pull her in, is, I ask her questions, and I make her opinion count, like I will say, ‘What do you think of that?’ [ 06:00 ]
S: And even if she can’t answer, you’re still including— even if she can’t speak typical words.
A: When I ask her, it makes her start thinking, ‘What do I think in this?’ For example, if Indiana Jones turned and said, ‘What do you think I should do next, Sarah?’ All of a sudden—even if you can’t tell him, or move, or anything— all of a sudden you realize you are in there with him. That’s one. And two, if you realize you would rather him go through the caves, or not over the bridge, or something like that. Because then, you would say, ‘I want to do that.’ It makes you want to join in— like, will yourself. You know, before, you’re just watching it all go on without you, but once you realize that you are also a character on the screen, then you start thinking, what would you want your character [ YOURSELF ] to do?
S: How does it feel if you start to think you are a character in the movie, or a person in the room, and you try to speak or communicate at that time, and nobody is listening to, or understanding you?
A: Then you just fall back on the movie theater seats again.
S: And start watching the story—
A: —Go on without you, again. [ 07:30 ]
NOTE: IN OTHER INTERVIEWS 'A.' TALKS ABOUT HOW HER SIGHT WORKS, AND ALSO DESCRIBES IN MORE DETAIL THE COUNTING EXERCISE, BELOW IN THIS INTERVIEW AT APPROXIMATELY 13:50. [ ***NEED TO FIND/CITE*** ]
S: Yeah. So then, we talked about-- if I were to switch to another topic. I asked for some advice about Dov [ SHESTACK, WHO IS AUTISTIC ] . What I explained in our conversation was that Dov has a really hard time getting in and out of cars. It’s very difficult to do for him to do, very uncomfortable, and he has to do it, on average, two or three times a day, at least. It’s very hard, every single time. What could I do to help him? You had some ideas.
[ *POSSIBLE WORD/S MISSING, BELOW?* ]
A: I don’t know if I would talk to you. If I see Dov, I say, ‘I had this issue, before, and this is because everything getting out of the car moves on me. So even if it was supposed to be in my driveway, everything was just movement, and it took time for everything to move. So this was, like, frightening. So I will tell you what I did, when I was a child-person. So, I want you to, like, listen. When I *XXXX??? listen, I mean, turn off your eyes. Like, close your eyes, and don’t use your eyes for anything. I want you to just listen to what I’m saying. Don’t look at anything; just listen to what I say.’ I say, ‘Close your eyes and just let someone lead you. Listen.’
S: So what would be your instructions to me with Dov?
A: Yeah. Your instructions would be, like, ‘Dov, close your eyes. Turn off your eyes. And I will lead you, like you were blind. Just make yourself blind for a little while, until you are home, or where you need to be... and then you could, like, organize everything you see, without the movement. Like see, count to five, turn off [ CLOSE ] your eyes, turn them back on [ OPEN ] . Look at what —let everything settle into space— where they are supposed to be. Because when you’re moving out of the car, everything just goes WHOOSH, you know?
S: M-hmm. [ 10:00 ]
NOTE: ‘A.’ DESCRIBES, BELOW, HOW WHEN SHE AND/OR OBJECTS/PEOPLE MOVE, THEY BREAK INTO ‘DOTS’ VISUALLY. ‘A.’ ALSO HAS PROBLEMS WITH DEPTH PERCEPTION WITH CERTAIN PATTERNS (ON CARPETS, FOR EXAMPLE). WHEN SHE WAS YOUNGER, STAIRS WOULD ‘DISAPPEAR.’ THIS AFFECTS/ED HER COORDINATION, CAUSING HER TO LURCH; TO APPEAR CLUMSY WHEN WALKING. ALSO IN OTHER INTERVIEWS, ‘A.’ EXPLAINS HOW VISUAL DISTORTION/'DOTS' MAKES SEEING FACES AND KEYBOARDS DIFFICULT; HOW THE ONLY WAY SHE CAN SEE LIKE ‘TYPICALS’ IS ON PIXELATED T.V. AND COMPUTER SCREENS. [ ***NEED TO FIND/CITE. *** ]
A: Do you understand? Everything goes WHOOSH, it’s just like blurred movement. So then you have to sit still, to let everything fall into place. Close your eyes. And let them all, like— in your mind, organize; open, organize. When you’re in the car, what you do is tell him to close his eyes, and to move like a blind person —let you lead him like a blind person.
S: Then, will he still have an adjustment when he opens his eyes?
A: Yeah, it take some time. He will make an adjustment. But if he is still, then things could fall into place— I like, all the little dots, make stationary things— I don’t know how to explain—
S: When you say ‘all the little dots,’ do you mean objects, or dots?
A: All the little dots become stationary images. Like this is a tree, and this is like a door, and this is like a driveway, you know? Like all the little dots start forming a picture.
S: Because they’re not moving.
A: They’re not moving. If you’re moving out of the car, everything goes, it’s like vertigo. Everything is like moving, so you could just almost fall off of a cliff. Everything goes WHOOSH. There’s no images, so you don’t, you know— I had that problem, where it wasn’t just images, it was like a movement, like 'FWOOT'.
S: Which is overwhelming.
A: Yeah, because you’re going sideways. I don’t walk sideways, see?
S: Mm-hm.
A: I move forward. I’d, I move sideways, I could do that if I was spinning, but then I’m just spinning in one area— that doesn’t make a d— that’s something else. But I’m not seeing anything. But in the car, just trying to know where you’re at, going out?
S: Mm-hm—
A: Because you’re sitting and then you’re standing. Everything is just like, [ MAKES VOMIT SOUND ]. You could almost get nauseous and dizzy and frightened because you don’t even see the floor that you’re stepping on.
S: Wasn’t it, like you said, that as a child, you said that stairs could disappear?
A: Yeah, the stairs used to disappear on me. They would curve and they didn’t have, like, space. And they would just curve, and like, you could fall through like a hole, kind of. And they would move, like, not be so clear. So if I had to go down the stairs I had to close my eyes and feel my way down like a blind person.
S: Now what do you do?
A: Now, I’m older, and my senses don’t hit me as hard as they did when I was younger. But my sister pulled me out of the car when I was a child-person. Was— like, I had to close my eyes and she would lead me out, and I would not open my eyes until I was inside the house. So my sister would hold my hand up until we were in the house. And I didn’t remember, I only remembered that because I did that with the Dolphin, after.
S: And what about— if someone like Dov has— he has a tough time with all kinds of transitions. Another one would be if he’s sitting on a couch, for example— It’s really overwhelming for him to get up to go use the bathroom, even if he has to go. And that’s even at home. What would that be—?
NOTE: ‘A.’ DESCRIBES A ‘SENSORY COUNTING EXERCISE,’ BELOW, THAT SHE INVENTED, TO HELP CONTROL FINE MOTOR MOVEMENTS AND SENSORY INPUT. THIS IN TURN HELPED HER TO –-AMONG OTHER THINGS-- SPEAK FOR MEANING AND DRIVE A CAR. SEE OTHER INTERVIEWS FOR MORE EXAMPLES AND DISCUSSION ABOUT THIS EXERCISE. [ ***NEED TO FIND/CITE.*** ] SEE ALSO BOOK NOTES RE: DONNA WILLIAMS EXPERIENCING BEING ‘HEARING DEAF’ AND ‘SEEING BLIND’.
A: It might take time, and I would do what I had told the ‘D—’ to do, and it takes time. Even if it don’t work right away, don’t give up on it, just keep on doing it, because you’ll see that you’ll get better at it. I would go, like, with your eyes: 1, 2, 3, 4, 5, —eyes on [ OPEN ]. 1, 2, 3, 4, 5, —ears on [ ACTIVELY PAY ATTENTION, LISTENING ] . When you put your ears on, turn off your eyes; when you put your eyes on, turn off your ears. It’s like, start —don’t even try to do anything— just try to switch. If you can control that part of yourself, even for a little while, own that. You see, don’t attack the big things all at once. Start breaking them down into tiny little parts. And if you can start owning tiny little parts of yourself for a part of the time, then you can move on to bigger things. You can just sit there, not even paying— not even doing anything, so that you don’t have to, like, have all new information to process or organize. What you do: you’re just sitting there on the sofa. Then, turn your eyes on, right?
S: Mm-hm— [ 15:00 ]
A: And then count to five, and turn your ears on. Now, it might not happen right away, and you may not want... it might be frustrating, but try to, like, switch: —5— switch: —5— You’ll actually feel good, when you are switching. Like, when you can make one thing into the front, and the other thing into the background. You’ll start to feel like, ‘Oh, I’m controlling this little part of my self.’ So you just sit there, and just go, ‘Five: 1, 2, 3, 4, 5, Eyes On.’ Then just look at everything. Then: ‘1, 2, 3, 4, 5,’ you know, ‘Ears,’ so just— ‘Off,’ you know, like, ‘turn off.’ ‘Eyes on, eyes off’. And then you go— or, ears— well, you could just start there. ‘Eyes on. Eyes off.’ —‘Ears on. Ears off.’ Or you could go, ‘Eyes on. Eyes off.’ You could start that first. ‘Eyes on. Eyes off. —Eyes on. Eyes off.’ So it’s like— you start controlling that little bit of yourself, and it doesn’t seem like it’s going to do much, but it does a lot, because now you could, like— for yourself— control when you have your eyes on; and when you have your eyes off. When you have got that little part of NOTE: yourself, then you feel confident to move on to another section. [ 16:30 ] NOTE: Like the Dolphin? She has this thing like where if she is moving, she has got her eyes on and her ears are off. So if you call her, she won’t hear you. Then she stops, and then she’s listening, and then she goes on again. So she’s like, if you see her, she’s, like, walking-stopping-walking-stopping-walking-stopping. That’s because she’s going from eyes to ears; she’s shifting. So what you first start off at is just, ‘Eyes on.’ And just count, ‘1, 2, 3, 4, 5,’ and see what you see, and then close them. And then when you close them, organize everything. Organize everything. Now, when you move, when you get up to go to the bathroom, everything’s going to move on you.
S: When you get up out of the sofa— ? [ 17:30 ]
A: When you get up out of the sofa, everything’s gonna move on you. So, even though you know you are in your house, and this is your sofa, and this is the bathroom— in your mind you know you want to go there, but once you get up to move, everything —all the dots— I don’t know if you see dots, [ BUT ] I see dots. All the dots move.
S: Mm-hm.
*A: And they don’t become concrete, anymore. You know, like they’re not where they’re supposed to be, because they’re moving.
S: Yeah. [ 18:00 ]
*A: Because you’re moving. Everything becomes, like, WHOOSHH. So it’s like, everything, your vision becomes distorted. You cannot rely on your vision, at this time, really.
S: And you don’t need it, really. You could get up without your eyes open.
NOTE: ‘A.’ GIVES AN EXAMPLE, BELOW, HOW SHE CLOSES AND OPENS HER EYES STRATEGICALLY TO NAVIGATE, GETTING UP FROM A COUCH TO GO TO THE BATHROOM AT HOME, WHERE SHE IS FAMILIAR WITH HER SURROUNDINGS, BUT HER VISUAL FEEDBACK IS SO DISTORTED WITH MOVEMENT THAT SHE HAS TO SWITCH BACK AND FORTH; MOVING, LOOKING, ESTIMATING, CLOSING HER EYES, AND THEN MOVING AGAIN. ‘A.’ USES A SIMILAR STRATEGY FOR PICKING UP ITEMS [ FOR EG. EATING ], READING AND TYPING: LOOKING, ESTIMATING, AND WITH HER EYES CLOSED (OR ‘SHUT OFF’ BUT STILL OPEN), REACHING OUT TO ENGAGE. NOTE: SEE OTHER INTERVIEWS — ***NEED TO FIND/CITE.***
‘A.’ HAS VISUAL CHALLENGES NOT ONLY WITH EVERYTHING BREAKING UP IN TO DOTS AND BLURS WITH MOVEMENT (HERS, AN OBJECT OR OTHER PERSON, OR THE ENVIRONMENT) BUT ALSO LACKS DEPTH PERCEPTION AS DESCRIBED IN THIS INTERVIEW, WITH STAIRS AND STEPPING OFF CARPETING. WHEN SHE TOLD ME THIS, I REALIZED THAT SOME MOVEMENTS I THOUGHT WERE ‘OFF’ BECAUSE OF MOTOR CHALLENGES IN PEOPLE ON THE SPECTRUM, MIGHT ALSO BE BECAUSE OF THESE VISUAL DISTORTIONS, CAUSING THEM TO FLINCH, STUMBLE OR APPEAR UNCOORDINATED BECAUSE IN FACT WHAT THEY WERE SEEING DID NOT MATCH UP WITH WHAT WAS ACTUALLY HAPPENING IN THEIR ENVIRONMENT.
THIS LED ME TO ANOTHER REALIZATION: JUST AS DEAF PEOPLE WERE ONCE CONSIDERED TO LITERALLY BE “DUMB” AND PEOPLE WITH CEREBRAL PALSY —BECAUSE THEY MAKE INCOMPREHENSIBLE SOUNDS, DROOL AND MOVE CLUMSILY MUST BE “RETARDED”, SO TOO, TYPICALS HAVE ASSUMED THAT DIFFERENT VOCALIZATION, LACK OF EYE CONTACT AND LACK OF MOTOR SKILLS MEAN THE SAME FOR PEOPLE WITH AUTISM. SO BESIDES PHYSICAL IMPAIRMENT NOT NECESSARILY BEING RELATED TO INTELLIGENCE, IT MIGHT NOT ENTIRELY BE RELATED TO THE MUSCULAR OR NERVOUS SYSTEM, BUT RATHER, TO A DIFFERENTLY OPERATING SENSORY SYSTEM, EVEN IF THAT SENSE —HEARING OR SEEING— TESTS NORMALLY IN A DOCTOR’S OFFICE.
FYI:
For more about auditory and visual testing normally with some autistics, and how these senses work differently
SEE BOOKS
1.) “THE FABRIC OF AUTISM” BY JUDITH BLUESTONE, Ph.D.: see index for ‘ears’, ‘sound’, ‘vestibular system’, and ‘vision’.
Book link at: https://handle.org/Sys/Store/Products/299231
2.) “ACCESSING THE HEALING POWER OF THE VAGUS NERVE” BY STANLEY ROSENBERG: Chapter 7: Autism Spectrum Disorders book link at: https://hypnotherapycenter.co.za/wp-content/uploads/2020/10/Accessing-the-Healing-Power-of-the-Vagus-Nerve_-Self-Help-Exercises-for-Anxiety-Depression-Trauma-and-Autism.pdf —Both books are available in a .pdf format and are available for free at some public libraries.
ALSO BELOW: ‘A.’ KEEPS CHECKING IN TO SEE IF MY VISION WORKS THE SAME WAY HERS DOES. SHE WAS SURPRISED MANY TIMES, WHEN ASKING, TO FIND OUT THAT MY PERCEPTIONS AND SENSORY EXPERIENCES WERE DIFFERENT FROM HERS; THAT MOST TYPICAL PEOPLE ARE UNAWARE OF THESE DIFFERENCES, JUST AS SOME PEOPLE WITH AUTISM ARE SURPRISED AT HOW TYPICALS EXPERIENCE AND THINK ABOUT THINGS-- [ ***NEED TO FIND, CITE*** ]
ALSO BELOW: THIS STRATEGY, STARTING WITH EYES CLOSED, MOVING/WALKING, BEING STILL AGAIN AND OPENING EYES, ALLOWS EVERYTHING VISUALLY TO BE MORE ‘STABLE’ AND LESS DISORIENTING, WITH SWITCHING BACK AND FORTH, --WHICH THE 1-2-3-4-5 SEEING EXERCISE HELPS TO BUILD A SKILL WITH, INCLUDING BEING LESS IN JUST A PERSON’S MIND, AND MORE IN A BODY, WHICH IS THE CONVEYANCE —THE ‘MISSING LINK’, THE ‘DISCONNECT’ THAT SOME PEOPLE ON THE AUTISM SPECTRUM STRUGGLE WITH.
*A: You don’t need it, because you get up. So close your eyes and get up. When you get up, then you open them— because everything’s gonna —they’re not moving no more, so they could fall into their... just give some time to adjust where all the dots will fall into place. Then all of a sudden, that will be, ‘O.K., that’s where my coffee table, and that’s a T.V. and that’s a lamp— I am in my living room.’ But when you’re getting up, the visuals might d— I don’t know if you’re like me at all, but it happens with me, see? And you get that sinking feeling, like you’re on a roller-coaster, like: [ MAKES VOMIT SOUND ] because everything’s like, ‘unqh’ [ GULPS ] . You know, and you’re not— [ 19:00 ] So you close your eyes, and you get up. Then you open it, just to organize. Then you close your eyes, and you make a right or left, in the direction you know the bathroom is. If you open your eyes, then you see where everything’s at, then you know that the bathroom be, like either in this direction, like to your right or to your left. You kind of know, in your home, where it’s everything at. So you close your eyes, and make a left turn— say, for example, if you’re going to the left. I’m saying for an example, if it’s imaginary— If the bathroom, if you know the bathroom is to the left, then you move to the left, with them closed.
S: Mm-hm.
A: Now you open your eyes. And you see where everything kind of stationary is—
S: Yeah.
A: —all of a sudden, so you close your eyes, organize again. Just do, open again. You know... and everything should be back where they were before.
S: What are you organizing, everything in your head: ideas or pictures? [ 20:00 ]
NOTE: TEMPLE “GRANDIN [ HAS ] said those with autism think from ‘the bottom up,’ focusing on specifics rather than the big picture.” https://www.theintelligencer.com/local/article/Temple-Grandin-sees-life-in-pictures-10428199.php
BELOW, ‘A.’ DESCRIBES ORGANIZING EVERYTHING IN PICTURES, FOCUSING ON A SMALL PART OF THE ENVIRONMENT:
A: The visuals: where everything is at. So you don’t want everything to move, see? So you could now go, maybe go like, point, instead of letting all the visuals go in, just center on one thing. Just look at one thing, there— like, let’s say over in the corner of the door, where the bathroom is. Like say if it’s the doorknob or something. And just focus on that. Nothing else. Like, not to organize anything else. And, you know, like, if you already know that there is nothing there in that pathway that you would stumble on, you would just go. Like, don’t even look. For example, if you saw the Indiana Jones— like if someone is walking to the bridge, and they’re afraid of walking over the bridge because there’s like a cliff—
S: Mm-hm.
A: —and they could fall down. They say don’t look at the ground, just look in front of you.
S: Yeah.
A: Because if you look down you realize you could fall to your death and you get into a panic. So don’t— don’t look at everything else; just look in front of you. Step by step, in little bits. One [?] something [?] to center on, like the doorknob— like, you’re going toward the doorknob— or the corner of the door. There’s always these little white ridges there— well, my doors have white, you know—
S: Mm-hm.
A: —where the door is— something that sticks out, and that’s where the door is. So I focus on that, and I just go. Like, the walls don’t exist; the floor don’t exist. I don’t even look at that; I just look straight through there just to get there. Then I close my eyes, you know, you close your eyes again. And you go in, right? You know, you just move a little bit, just to get inside.
S: Yes.
A: Then, like, keep still; don’t move. Open your eyes again and see where everything else is. It’s like taking little snapshots of everything is, and then moving: snapshot-move-snapshot-move.
NOTE: ‘A.’ DESCRIBES CHALLENGES/STRATEGIES/STEPS INVOLVED IN LEARNING TO USE THE TOILET SUCCESSFULLY, BELOW.
S: So how— when you were a kid, you were describing it was hard to learn everything about going to the bathroom—
A: Yeah, well it was a long time— and it’s very embarrassing; I don’t really want to talk about— I was thirteen.
S: Yeah, no, I was just saying: Dov has similar issues. Any advice for him, once he gets inside of the bathroom, how to organize and go through all the steps?
A: I had to go through all of the steps, one-by-one.
S: Yeah?
A: One-by-one. Because, honestly, I did everything wrong. [ 23:00 ] If I— if there’s a step you miss— I mean, like, if I didn’t— if I pulled my pants down, but not my underwear— I would go in my underwear. Or if I didn’t pull the seat up, I would just pee, like right there, on top of the seat.
S: So, any advice for other autistics who struggle with those issues— just like you gave a really good strategy for how to get to the bathroom. Any suggestions inside the bathroom, to people like Dov, or other autistics?
A: I repeated stuff to myself, like I had to remind myself to do every step.
S: Did it help to close your eyes and think about the next step?
A: Yes. That’s what I used to do. Like, ‘O.K., I came, I got my pants down.’
‘B.’ [ LAUGHS ]
A: Then I close my eyes and think, ‘What do I need to do next?’
S: Then— [ 24:00 ]
A: Then I opened it, and I looked around. Well, I started closing my eyes a lot, too. They used to think I had problems with my eyes, too. See? So—
S: But that’s just to get everything organized, visually, anyway—
A: It’s to get organized, because you can’t trust your vision, see?
S: Right. It’s because of the dots—
A: Like right now, if I’m going to the bathroom right now.
S: Yeah.
A: I know the bathroom is right in front of me; I know the path is kind of clear. I plan it out in my head, first. I pull the cover off. I get off the edge of the bed. I walk like it’s like three paces—
S: Yeah.
A: —to the door. There’s a door frame. Then a couple of paces, there’s going to be on my left, a tub. In front of me there’s a toilet, and to the right there’s a sink. See?
S: Yeah.
A: So now I’m walking through there, the three paces, I’m already through into the white room— because the bathroom is white. And then, there are all these white tiles, and I could tell I already have to distract myself from counting the tiles, because I want to, but I can’t do it all of the time. I already did it before, too, so now it is not necessary to do so. But anyways, I walked through there, I go to the toilet, and now I have to remember to turn around—
S: —Your body.
A: —away from the toilet. Because I used to just sit...stand in front of the toilet, right?
S: Mm-hm.
A: Trying to figure out— Like, I would pull my pants down—
S: Yeah.
A: —and sit in front of the toilet. So I would just sit down on air.
S: Yeah. Ugh!
A: So I have to remember: 'O.K. there it is in front of me,' and then I would have to close my eyes, because the room would spin.
S: Yeah, because if you sit down and then get back up, that’s the same thing about everything moving.
A: Yeah, that’s what I had— but I had bad eye problems. The spinning was really bad. When I was a child- person— nothing— it was a nightmare, when I was younger, see? It was harder, everything, visually, so— I had to sit, stand there. So I would turn around, if I’m thinking about when my eyes were really bad, when my vision was such a liar—
S: Mm-hm?
A: I don’t mean like a ‘liar,’ but it would distort what was happening. So it used to make things close to impossible. People thought that I had eye problems. But then they [ DOCTORS ] would check my eyes, and I could see everything better than most people, like very far away, so they didn’t understand that. My eyes would just kind of shift and change everything. So I had been having this problem for a while.
NOTE: ‘A.’ MENTIONS ELSEWHERE THAT DURING CHILDHOOD HER EYES CHECKED OUT ‘NORMAL’ AT EXAMS BY EYE DOCTORS/OPTOMETRISTS. [ ***NEED TO FIND/CITE*** ]
ALSO NOTE: THE ‘VAGUS NERVE ‘ AND ‘THE FABRIC OF AUTISM’ BOOKS DISCUSS PEOPLE WITH AUTISM TESTING NORMAL FOR HEARING, (LIKE ‘A.’ DID WITH VISION) AND WHY THOSE TESTS DO NOT BEGIN TO COVER AUDITORY OR VISUAL CHALLENGES FOR SOME PEOPLE ON THE SPECTRUM —SEE QUOTES WITH MY NOTES FOR BOTH BOOKS --available later in 2025 or by contacting S.A. Jones at [email protected].
FYI: For more about auditory and visual testing normally with some autistics, and how these senses work differently SEE BOOKS 1.) “THE FABRIC OF AUTISM” BY JUDITH BLUESTONE, Ph.D.: see index for ‘ears’, ‘sound’, ‘vestibular system’, and ‘vision’. Book link at: https://handle.org/Sys/Store/Products/299231 2.) “ACCESSING THE HEALING POWER OF THE VAGUS NERVE” BY STANLEY ROSENBERG: Chapter 7: Autism Spectrum Disorders book link at: https://hypnotherapycenter.co.za/wp-content/uploads/2020/10/Accessing-the-Healing-Power-of-the-Vagus-Nerve_-Self-Help-Exercises-for-Anxiety-Depression-Trauma-and-Autism.pdf —Both books are available in a .pdf format and are available for free at some public libraries. —SEE QUOTES WITH MY NOTES FOR BOTH BOOKS —available later in 2025 on the TLCAutism.com website, or by contacting S.A. Jones at [email protected].
S: Mm-hm. [ 27:00 ]
A: And then I would reach down, where I would go behind me, and I would feel the edge of the seat— the full edge of the seat. Because, you know, that’s— And then I would drop down my pants. And I did this before in the beginning, but I had to go ‘I’m wearing jeans, I have to undo the button first.’ Now, this is hard— I don’t know if you’ve had this problem, but I had the hardest time with all of my buttons.
NOTE: 'A.' SAID THAT AS A CHILD INTELLECTUALLY SHE WAS AT OR ABOVE GRADE LEVEL, BUT IT TOOK YEARS OF PRACTICE TO BE ABLE TO DO FINE MOTOR SKILLS LIKE BUTTONING CLOTHES AND TOILETING.
S: Yeah, we’ve changed all of the buttons to snaps [ FOR DOV ON HIS PANTS ] .
A: Yeah, and I didn’t— shoelaces, I could honestly tell you that I was in my twenties, almost— before I perfected this, because it would take me twenty minutes to tie my shoes, and it’s embarrassing. But it’s always the little things that get in the way.
S: Yeah.
A: It’s always the little things. So don’t feel bad about this because you’ve made— you find out after, that you’re more clever than other people in other things. But it’s these little things that you take for granted, that will get in your way. So you turn around, and you try to see if you can feel the edge. But don’t go too far, because then your hand can go right through into the water, and that’s happened to me before.
S: Yeah.
A: But after a while you can start calculating. Like, how I calculated that it’s about two steps over to the door frame. I already know that, because I already know it takes three steps to go to the door frame. So you realize that. Like, how many steps it would take to go to the toilet. For me, it would take— eight steps. So you start calculating, you know, see?
S: Mm-hm.
A: So you start calculating, so like that’s why I know where everything is at —everything in my house. [ 29:00 ] When we had the hurricane, and we had no electricity. And it would be like, 10:00 at night and it was dark and no electricity— we could still go to— everywhere, like the bathroom— I mean I could go everywhere without a candle.
S: Yeah.
BELOW: ‘A.’ RECALLS TRIPPING OVER A DOLLHOUSE THAT WAS MOVED. A TYPICAL PERSON MIGHT ALSO NOT REALIZE IT WAS IN A DIFFERENT PLACE, BUT FOR SOMEONE LIKE ‘A.’ WHO FREQUENTLY RELIES ON LOOKING, CLOSING (OR TURNING OFF) HER EYES AND ESTIMATING TO NAVIGATE, CHANGING THE PLACEMENT OF AN OBJECT CAN BE STRESSFUL AND IS MORE LIKELY TO CAUSE HER TO HAVE AN ACCIDENT.
NOTE: MANY OTHER FIRST-PERSON ACCOUNTS BY PEOPLE ON THE SPECTRUM TALK ABOUT HOW STRESSFUL AND DISORIENTING IT IS TO HAVE THINGS CHANGED OR MOVED AROUND IN THEIR ENVIRONMENT. ( FOR ANOTHER EXAMPLE, SEE SONDRA WILLIAMS’ BOOK, “REFLECTIONS OF SELF,” c. 2005, p. 11, AT: https://www.inquiringbooks.com/products/author/Sondra%20Williams/~/product_id_desc —AND MY NOTES, AT TLCAutism.com THE WEBSITE COMING LATER IN 2025, or by contacting me at [email protected], ) WHERE SHE RECOUNTS WHAT SHE EXPERIENCED IF ANYTHING WAS REARRANGED IN HER THERAPIST’S OFFICE THE NEXT TIME SHE CAME IN.
SEE ALSO, IN ANOTHER INTERVIEW WITH ‘A.’, WHAT SHE EXPERIENCES VISUALLY WHEN A RESTAURANT SHE GOES TO, HAS REARRANGED THE TABLES AND CHAIRS; ALSO BOOKS BY DONNA WILLIAMS AND OTHERS [ ***NEED TO FIND/CITE BOOKS AND INTERVIEWS*** ]
A: So you have to start trying to —basically —make yourself blind when you cannot trust your vision. When your vision gets in the way, and you can’t trust it, you have to learn to navigate your way around like a blind person.
S: So switching things around in your house does what—? Like, if somebody— like, if Dov lives with his family and things get changed around in the house all the time: what is that like, for someone like you?
A: Me? I have to know where everything is at. It really bothers me when Gladys is like— I’ll still get stressed if Gladys is here and I come home and she moved something. Like, it was 'there' when I left. Like if I had a picture of it, like, ‘it’s there—’ and then it’s not there anymore— then I’ll go nuts a little bit— [ 30:00 ] But she pretty much tries to put everything back in the same place. Even though she really does. You know, like the dollhouse. Last time she cleaned, it was little bit closer to the door than it was supposed to be—
S: Mm-hm.
A: —so I actually kicked it by accident when I was going to the classroom. That’s because it was too close to the door, so the edge hit my knee.
S: Yeah.
A: So little things like that. But, yeah, my eyes are O.K.—better now than before. But before, my eyes would like play tricks on you. So you have to think about things like, your eyes will often have an optical illusion, or play tricks on you.
S: So what would be some things that— you learned were playing— like, give some examples.
A: I turned off my eyes—
S: Yeah?
A: And organized where everything was in my head. [ 31:00 ]
[ *POSSIBLE WORD/S MISSING, BELOW?* ]
S: Because, like, what would be an optical illusion that would give you wrong information? Can you give an example? Because I know that when you are moving *XXXX? and all the dots are moving and not organizing into shapes.
A: When the details are too big, like when your eyes focus on something, and the detail hit you, and they are too big, that you can’t figure out what it is—
S: Say if you were looking at somebody’s clothing, and that clothing had a pattern on it. Then, could that pattern be all that you see?
NOTE: ‘A.’ IS REFERRING BELOW TO A DINNER WE WENT TO AT HER FRIENDS’ HOUSE. THIS IS A GOOD EXAMPLE OF HOW ‘A.’ SEES, MOTOR CHALLENGES CAUSED BY VISUAL CUES, AND STRATEGIES SHE HAS DEVELOPED TO COPE. ALSO, IT DESCRIBES AN EVENT WHERE TYPICALS MIGHT MISINTERPRET PROBLEM SOLVING AS SOCIALLY ‘INAPPROPRIATE’ BEHAVIOR.
NOTE: THIS ALSO SHOWS HOW ALIEN THINGS CAN APPEAR VISUALLY TO PEOPLE ON THE SPECTRUM, THAT TAKE TIME TO FIGURE OUT NOT BECAUSE THEY ARE MENTALLY “SLOW”, BUT BECAUSE IT DOES NOT RESEMBLE SOMETHING IDENTIFIABLE, AND TAKES TIME TO FIGURE OUT WHAT IT IS.
WHEN ‘A.’ SHARED HER EXPERIENCE AT THE DINNER WE HAD BEEN AT, I WAS SURPRISED AND HUMBLED. AS MUCH AS I THOUGHT I KNEW ABOUT AUTISM, WHEN I SAW HER USING HER HANDS TO TAKE FOOD OFF OF THE PLATE AND PUT IT ON THE TABLE CLOTH, I THOUGHT HER BEHAVIOR WAS PRIMITIVE AT BEST, AND SOCIALLY INAPPROPRIATE. IF ‘A.’ HAD NOT BROUGHT UP AND EXPLAINED WHY SHE HAD DONE WHAT SHE DID, I WOULD HAVE CONTINUED TO HAVE THE SAME, WRONG IDEAS.
IN FACT, I REALIZED THAT LIKE MANY OTHER THINGS I DID NOT UNDERSTAND AT FIRST, ‘A.’ HAD VERY GOOD, THOUGHTFUL REASONS FOR HOW SHE BEHAVED. I, ON THE OTHER HAND, WAS OBLIVIOUS, DRAWING INCORRECT, EVEN HARMFUL CONCLUSIONS, THAT DID NOTHING TO IMPROVE THE SITUATION. IF, INDEED, ASPIRING TO TYPICAL SOCIAL BEHAVIORAL NORMS IS THE GOAL, —WHICH SOMETIMES IS NOT THE CASE (SEE THE EXAMPLE WITH DOV EATING DINNER AT CAMP) THERE MUST BE ACCOMMODATIONS: FOR EXAMPLE, PLATES THAT ARE A SOLID, CONTRASTING COLOR WITH THE TABLE SURFACE, SO THAT THEY CAN BE MORE EASILY SEEN AND IDENTIFIED, THUS ELIMINATING THE NEED FOR SOMEONE LIKE ‘A.’ TO HAVE TO USE HER HANDS TO FEEL WHAT WAS GOING ON, AND PUT FOOD ON A TABLECLOTH TO BE ABLE TO FIND IT TO EAT. WHICH AGAIN, IS A MISUNDERSTANDING OF BEHAVIOR, AS A TYPICAL PERSON WOULD PROBABLY ASSUME THAT ‘A.’ WAS NOT SMART ENOUGH TO HAVE “GOOD MANNERS”, WHEN IN FACT IT COULD JUST AS EASILY BE ASSUMED FROM AN AUTISM PERSPECTIVE THAT IT IS THE TYPICAL PERSON WHO IS NOT BEING SOCIALLY CORRECT, MAKING IT SO HARD TO NAVIGATE EATING AT A DINNER TABLE.
A: Yes. Yeah, like the pattern is all you see. Like, when we went to Henry’s house?
S: Yeah.
A: —and she put all the grapes on a Nemo plate. All— I knew that –I saw— like, at first all I saw was a bunch of colors, like bright colors.
S: Yeah. [ 32:00 ]
A: —and it didn’t even look like a plate, just bright colors. Then all of a sudden, the bright colors sort of like, settled down, and then there were edges. Like different colors, and then they had the edges.
S: Mm-hm.
A: And you see they would end in a round shape. Then when the colors settle down a little more, then I realize, like, ‘Oh, that’s, like, Nemo, like Nemo from the Walt Disney movie?’
S: Yeah.
A: And it was the fish from ‘Nemo’. See?
S: And then when did you see food on the plate? After that?
A: I saw that there was pictures, like other colors that did not correlate with the image.
S: Of the fish? —Nemo.
A: —of the fish. Yeah, there were weird things. I touched it and there was something on it. Well, of course I rationalized that if she put down a plate, if it turned out to be a plate, then there may be something on it. [ 33:00 ] So I looked at it, I realized it was grapes –after I took it out of its environment, [ used her fingers to take the grapes off of the plate and put them on the table cloth ] which was a many-colored plate.
S: Mm-hm.
A: So I knew that the Dolphin would not be able to see the grapes on the plate, because she won’t be able to separate the grapes from the plate.
S: So then a person could think— like, a typical person could see a child like ‘B—' or Lily, and go, ‘Oh, they have bad motor skills; that’s why they can’t pick it up off the plate. But it could also be because the plate has such a fancy artwork, that you can’t even— you can’t see the food.
A: Yes. You get lost on the plate. And then if you get lost on the plate, then you can’t separate the food from the plate.
S: Yeah, so—
A: It just becomes a mix of colors altogether. So that’s why I took the grapes off the plate [ AND PUT THEM ON THE TABLE ] . And see, Sarah, you remember, they had a tablecloth, and it was white?
S: Yes, I remember.
NOTE: GOOD DESCRIPTION BELOW RE: THIS AUTISTIC PERSON’S STRATEGY FOR TOUCHING/GRABBING AN OBJECT WITH THEIR HAND.
[ *POSSIBLE WORD/S MISSING, BELOW?* ]
A: See? So the grapes on the tablecloth: you could see that they were grapes on a white tablecloth. See, they are grapes. So that way the Dolphin would look, aim —because she don’t *XXXX? you see? She’ll look first, and then she’ll aim, and then she grabs. But when she’s grabbing, she is not using her eyes —you’ll see that— I don’t know if you see that, but she’ll grab after. Like, soon after, so she could grab it.
S: So she looks to get the picture and estimate.
A: Yes. She looks to get the picture, and then she estimates to where she has to aim to grab it--because she hasn’t perfected that part quite yet. But you’ll see that she’ll get better and better at it after. But that was why I took it off the plate. Like, all of my plates are the same color, see? So you can see where the food ends and the plate begins, and you could see where the plate ends and the food begins.
S: If somebody—
A: —And you could see where the plate ends and the table begins, too.
S: Mm-hm.
A: Like, I would never have, like, white plates on a white tablecloth. Because that would be too much —of things. My house -–you could see -–I have things where things separate. Like, where one thing ends and another begins, because there’s a contrast— if it’s too busy, or something.
S: If someone is learning speech, and they are living at home with their family, what would— would there be visuals even in— like, they’re trying to look at somebody’s mouth —focus on somebody’s mouth. Would it help if the person wore bright lipstick, or would it be better if they wore no lipstick? [ 36:00 ]
A: I don’t know about other people, but it wouldn’t make that much of a difference to me, really.
S: What if the person was wearing a bright shirt with a big picture on it, like the Nemo plate? Would it be easy or hard to keep looking at their mouth?
A: Yeah, because then I’m too caught up in what they are wearing.
S: So, if they’re wearing something like a blue tee-shirt or a white tee-shirt without a big design or pattern on it, it would be easier to look at their mouth?
A: Yeah, maybe— yeah.
S: What if they had giant, fancy, glittering earrings— they had great big earrings, that had all kinds of—?
A: Yeah, you could get distracted, too. I’m trying to think about when I was younger, because now I know how to tone things down, a lot.
S: But someone who is a teenager like ‘J— B—‘, or like ‘D—', or someone like Dov—?
A: Well, I know with ‘D—', what I need to— what to do.
S: What is— would it— I guess what I’m saying is, for someone like yourself as a child, or other kids, depending on what kind of autism they have— it seems to me like serving food on a plate with a picture on it, or trying to do speech therapy with a shirt on with a big, complicated picture all over it, would be—
A: I would put on a plain shirt.
S: Like solid color?
A: Well, yeah, like I got on this shirt right now because— Gladys picked it. But if I was going to practice the mouthing—?
S: Yeah.
A: If I was going to practice the mouthing with the ‘D—', then I wouldn’t wear it, because I would not want her to count all the beads in the front, or to look at all that; I want her to look at my mouth.
S: [ 38:00 ] And what about jewelry? Like, would you wear a big necklace?
A: No, I don’t wear necklaces anyhow.
B: [ LAUGHS ]
S: So things, for someone, say— like a speech therapist— it might have been helpful to you—
A: I don’t know.
S: —to have a— for when you were a teenager— or maybe, like, with ‘D—‘ —it would be helpful for a person to do things like not wear a lot of jewelry on their neck and ears, and not wear a shirt with beads and big picture and patterns all over it—? Because then it’s going to be hard for someone like yourself— like, if you’re a young person still learning— you would be busy looking at that, instead of looking at their mouth.
A: Yeah. I guess so— I hadn’t really thought about that. [ 39:00 ] My— ‘D—’s’ therapist wears green scrubs most of the time. And then sometimes it’ll have a ‘V’ here, and sometimes she’ll have like a t-shirt underneath—?
S: Mm-hm.
A: —like a dark shirt, with the sleeves coming out, and she’ll look like the people on [ THE T.V. SHOW ] ‘Scrubs.’
S: Yeah!
A: Where, like, Turk always has the green scrubs on, but, like, the guy— J.D. would have a dark shirt up to here, sometimes, or a t-shirt, then he would have the scrub, and they have the ‘V’ like that. And then he has, like the dark here. Sometimes they change the colors, but it’s always, like, two different colors, where they’re that. So she always wears, like, a minty green scrub, and if she’s not wearing that— [ 39:54 ]
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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
TLC Autism* How Some Autistics See + Sensory Chaos... WTjd100807fgh2o3.doc
WORD TRANSCRIPT & Commentary
See video at: http://youtu.be/j-u56xSjw-M
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: How sensory experiences differ for Autistics v. Typicals. Why Autistics prefer objects to people. Sensory issues and speech. Sensory Chaos.
*The Language and Culture of Autism - A case study. An ethnographic investigation.
10/08/2007, Tape 2/3, Clips f, g & h. TRT: 00:22:36 c. 2007, 2024 by S. A. Jones
My condo bedroom area, day. ‘A.’ on screen with daughter, ‘B.’ off and on screen; S. A. Jones filming/interviewing, off screen.
KEY: ~S = Sarah/camera/interviewer. ~A=Woman being interviewed. ~B= Woman’s child.
NOTE: ‘A.’ DESCRIBES & PROCESSES RECENT EPISODE RE: ACCUTE SENSORY CHAOS. ‘A.’ LAYS ON A BED THROUGHOUT THE INTERVIEW.
A: --like a minty green scrub [ CLOTHING ] and if she’s not wearing a minty green scrub, then she’s wearing a pink one.
S: Um-hm… So first of all it’s somewhat— Like you were talking about like-- [ OVERLAP, UNITELLIGIBLE… ] like things changing. –-Like predictable what she will wear. [ OVERLAP ]
A: --Sh—well, that’s what she wears like, if she wore something different one time, I didn’t recognize her.
S: Well one thing that I thought-- [ OVERLAP ]
A: Like she-- [ OVERLAP ] Like she one time she wore the minty green, like, scrub. And then one time she wore the pink one.
S: Um-hm
A: And then one time she wore the pink top, but with the green bottoms—
S: Yeah--
A: --and that threw me off a little bit.
S: Well one thing, um, I wonder about, like when I’ve been visiting, um, when I travel, I usually don’t pack a lot of shoes with me because it takes up room in my suitcase--? [ OVERLAP ]
A: Yeah, and you got the red shoes.
S: Yeah an— [ OVERLAP ]
A: Crocs-- [ OVERLAP ]
S: Yeah. The red Crocs with the black, with—they have—holes in the top so it looks like dots. [ 01:04 ]
A: Yeahsss.
S: So, then,-- [ OVERLAP ]
NOTE: SEE ALSO OTHER INTERVIEW(S) WHERE 'A.' DESCRIBES HOW HER VISION WORKS. [ ***NEED TO FIND/CITE*** ]
A: --Except like what like they move they got, ‘Whoosh!’. Like they, they got lines when they move like— [ OVERLAP ]
S: --like the trails. [ OVERLAP ]
A: Like when you move the red, it’s like red with like little dots but they become like, they look like stripes almost like, ‘Shhhh-shhhh-shhhh!’[ OVERLAP ]
S: So then— [ OVERLAP ]
A: Red blurs with—If they move, if you move slow, then you could see like the lines ‘n stuff. But sometimes I see the red like, ‘P’shhh-p’shhh-p’shhh-p’shhp!’ --Like, ‘P’shhp.’ I like looking at people’s feet. [ 01:38 ]
S: So a good way for me, if I’m, um—If I’m planning a visit with you… um, it would be ideal because I only have a few suitcases anyway... But it would be ideal for you if I didn’t pack with twenty very different kinds of shoes, and wear different shoes several times a day because it would be harder to know it was me, right? [02:02 ]
A: Yeah.
S: And if I come over to you to say ‘Hi.’— [ OVERLAP ]
A: --But I could hear you. I would kn— [ OVERLAP ]
S: --yeah— [ OVERLAP ]
A: --know you right away as n’—as you say something.
S: Yeah. And then— [ OVERLAP ]
A: --So I—it doesn’t make a difference because I would recognize your voice.
S: Right. But if somebody was, say, a younger person with autism, like, um, kids like 'J-' 'B-', or, a kid like 'N-', or a kid like Dov— [ OVERLAP ]
A: --I don’t know about how Jamie is, or m— [ OVERLAP ]
S: --Yeah. [ OVERLAP ] [ 02:30 ]
A: Mm, I know… like the Dolphin recognize your voice, too, always.
S: Right. But if she was gonna go for speech, and she had to keep looking at the speech— Like Dov goes to speech right now. And the speech person will want him to look at their mouth many times.
A: Yes.
S: So for someone like Dov who has a hard time with the visuals, it would be helpful maybe—we could ask him, too— It would be helpful, maybe, for the person to not wear all kinds of different clothes with all kinds of visual pictures all over the clothes and patterns and all kinds of jewelry because then it’s hard for hi— maybe for some autistics to focus on their mouth. [ OVERLAP ]
A: Well, you have a speech therapist that does that?! [ 03:17 ]
S: A lot of t’m do because Typicals, in all honesty—
A: And if they’re being a speech therapist and they’re working with them wouldn’t they try to make things as simpler as possible?
S: Not n—This is what may be amazing to you, but um, many Typicals have no idea how overwhelming this is visually. And with speech you have to look— [ OVERLAP... UNINTELLIGIBLE… ]
A: --but if she’s a speech therapist supposed to be working with autistic people then wouldn’t she have been told that?
S: I don’t know. I’m telling you that I work with many, many therapists to do everything from speech to motor skills and life skills and everything you can think of, and they wear a wide variety of different kinds of jewelries and— [ OVERLAP ]
A: Um… [ OVERLAP ]
S: --a wide variety of clothes and everything, and they— [ OVERLAP ]
A: --I guess we are picky with our therapists. I don’t know— [ 04:15] [ OVERLAP… UNINTELLIGIBLE ] I don’t have a problem telling people [ OVERLAP ]
S: Yeah-- [ OVERLAP ]
A: --when they annoy me or something. Like I had this one woman who, like her voice bothered me a lot and I couldn’t stand the tone/her voice, so…
S: But that’s because you can talk and you can initiate. But a lot of people with/in the autism sp— [ OVERLAP ] [ 04:37 ]
A: Oh! And if their wear perfume, I have to tell them to leave.
S: Yeah. So, so if— [ OVERLAP ]
A: --I mean there was this lady; she put so much perf—like she had perfume and it was so strong and there was no way she could work with the Dolphin [ 'A.'s CHILD ] like that. I told her she stink, and that her perfume was too much, and that if she could wash herself before she worked on this… I tell them on all of this: Take off your earrings if they’re too busy or they clank too much.
S: Because just think though [ 05:08 ] if you had someone who’s a normal, like a parent,
A: Uh-huh.
S: --and they know, they really– This all seems like common sense to you, I’m sure.
A: No. They don’t– They didn’t like me at first because they had— [ OVERLAP… UNINTELLIGIBLE… ] Because I had so many rules when they would come to work with the Dolphin.
S: And I’ll tell you something else if I— [ OVERLAP ]
A: I them no earrings, no perfume, um, plain clothes— [ OVERLAP ]
S: See— [ OVERLAP ]
A: I don’t want shoes that clack-clack-clack. And I don’t want, like, the shrilly voice. And, um… [ 05:43 ]
S: Because see, as a Typical if I look at your shirt, with my vision, it looks very plain to me. And if I were a Typical going to see somebody with autism; until I hear it from you because you can use speech and typing, and you can initiate and tell me all this, I— [ OVERLAP ]
A: --But people know about sensory issues and autism. We’re in the year 2007. [ OVERLAP ]
S: --Actually a lot of people don’t know, 'J-', believe or not. That’s why it’s important to give this information and give these examples because so many people—they mean well but they honestly don’t know this. It’s hard for you to believe because you [ 06:23 ] know it in your whole being. But for many uh, uh, Typicals they—even typicals who are professionals— [ OVERLAP ]
A: --no, I know they didn’t like it, some of them, but that came in, and I would tell them—I, I’m pretty think I would say-- [ OVERLAP ]
S: Mmm… [ OVERLAP ]
A: --tell them to re-dress and schedule the appointment after, see? [ OVERLAP ]
S: Yeah— [ OVERLAP ] [ 06:42 ]
A: --and stuff. Like even—Like the Dolphin’s shirt is kind of busy, but I kind of like it because I counted all the dots,
[CAMERA PANS TO ‘B.’ STANDING BY A DOOR, THEN PANS BACK TO ‘A.’
A: --like all the pink ones and all the blue ones and all the yellow ones, and her dots. But you see, if I-I—I don’t have to work all my speech, so I’m not looking at her mouth. I could take the time to, like, like, count all the dots on her shirt.
S: Sure
A: See? Which is like OCD [ OBSESSIVE COMPULSIVE DISORDER ], but we have a lot of that so, um… [ 07:12 ] But I do that. I tell them, like, that. [ OVERLAP ]
S: Mm. [ OVERLAP ]
A: Like we had somebody come over, and I said— they didn’t like it too much.
‘B.’ MAKES SOUND OFF SCREEN.
A: Umm…
S: Well let me ask you something I’m-- [ OVERLAP… UNINTELLIGIBLE… ]
A: Just say sh— that they work for us, so I said, like, ‘Come back for work next time, and this is what I don’t want you to wear. I don’t want you to wear sandals that f— do the clack-clack-clack. Like the clack-clack-clack. [ 07:48 ] I don’t want like, pants that are too busy or too loud or that’s not so bad, but the shirt has to be plain; no clanky earrings and no perfume.
S: So—so 'J-', can you open your eyes for a minute to look at my shirt:
CAMERA PANS TO SHOW ‘S.’s’ SHIRT, WHICH IS VERY ‘BUSY’.
A: I sssaw your shirt.
S: It’s… It has all these things on it. What do you think if-if-if you’re someone younger like Dolphin? Too much?
A: I don’t know, but like the Dolphin— but no. But I think I could blur it out, but I can, but she will look at— She looked at it already. [ 08:28 ]
CAMERA PANS BACK TO ‘B.’ ON BED.
S: Yeah, so if a lower-functioning -–If, say, I’m a therapist and I’m working with lower-functioning kids—
A: I wouldn’t say ‘lower-functioning’ because Dolphin is a high-functioning smiler.
S: Yeah— [ OVERLAP ]
A: She could— She’s a expert smiler—
S: Um-hm.
A: And she could do it in a way that would make people warm and gushy and look cute every time, and do it at appropriate times and use it ah, to communicate so she’s an expert. She’s high-functioning smiler.
S: O.K. So if I was working with someone who has sensory issues— [ 09:04 ]
A: Yeah, like visual— [ OVERLAP ]
S: --Yeah— [ OVERLAP ]
A: --like that? I would try to make it as clear. [ OVERLAP ]
S: So, so… [ OVERLAP ]
A: Like-Like I remembered it was this carpet [ WITH A PATTERN WITH BOXES ] in this hotel and I kept thinking I was gonna fall in between them and-and-and, like, every time I looked at the floor I almost got—I couldn’t— Like I would— In this hotel one time –And it was like carpet and it was soft and everything?
S: Mm-hm-- [ OVERLAP ]
A: But you couldn’t go between the cracks— [ OVERLAP ]
S: Yes— [ OVERLAP ]
A: --because they were like, curved, [ 09:41 ] like leafy— [ OVERLAP ]
S: Yeah— [ OVERLAP ]
A: --And this. And curves. And it had different colors all in between and they looked like they had depth, you know? Like they’re space—Like it made it look three-dimensional?
S: Um-hm.
A: That’s what I mean about your eyes playing tricks on you, because you’ll see something like carpet or wallpaper and it will look like three-dimensional. Like sometimes like stripes on the wall look three-dimensional and you feel almost like you could like fall between them or go between them because it doesn’t look like it’s flat. It looks like-like-like it has ridges in it, you know? So that’s why you can’t trust your eyes all the time. And that’s why you have to clo—like turn them off, and… some— [ OVERLAP ] [ 10:27 ]
NOTE: THIS ALTERED VISUAL FEEDBACK COULD ALSO MAKE AN AUTISTIC PERSON APPEAR TO BE 'CLUMSY' BECAUSE IT WOULD AFFECT, FOR EXAMPLE, HOW THEY MIGHT TRY TO WALK ACROSS A ROOM.
S: --So one of the things—
A: Like that carpet, I couldn’t walk on that carpet unless I walked without looking.
S: So one of the important things um, if someone is, is for example a speech therapist would— It would be wonderful if they could wear solid color shirts.
A: Yes— [ OVERLAP ]
S: --without any designs or words or pictures on them.
A: Yes— [ OVERLAP ]
S: --That would be helpful. Li— [ OVERLAP ]
A: Well if they’re going to be working with someone who ha—is mm—who has visual sensory overload that would just only make sense. [ 11:03 ] I don’t know how over-loaded the Dolphin gets, but I don’t take any chances.
S: Yeah— [ OVERLAP ]
A: --Like if I’d work on her, doing like the mouthing, she has to watch my mouth we are playing, like playing.
S: Mm-hm.
A: You know? She has, has to have her eyes on all the time.
S: Yeah. And, um, there was something else I was going to ask… here, uh, with talking… Um, so, so it sounds like you need to calm down the visual environment and have the person in a physically stable position so they can really concentrate on looking at your mouth. [ 11:43 ]
A: Yeah. Mm, well, I imagine so. I had that visual thingies before— [ OVERLAP ]
S: --Yeah. It appears that many autistics do ha— [ OVERLAP ]
A: --have lot of visual and that’s uh, why you have to—You see, for example, you can’t [ 12:00 ] concentrate on what you’re hearing and you can’t concentrate on moving your mouth or making sounds if it’s taking you, like, an hour to take in all the visuals. [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: And forget the fact that people, annoying things that they are, never keep still. So, I mean, like, a table is gonna be where it’s at. You know, like, here you are, in like, in a hotel, see? The hotel lobby, right?— [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: Now, first I just settled down that the carpet is too busy for me to maneuver. It’s making me dizzy and nauseous and that kind of stuff.
S: Yeah.
A: And so I stop looking. I had a corner on which there was the coffee table and there, like a tiny little one-- [ OVERLAP ]
‘B.’ MAKES SOUND OFF SCREEN.
A: --right? With the phone on it?
S: Yeah. [ OVERLAP ]
A: And then there was like where you— people could sit there and call the rooms. And then there was like a brown leather sofa. So I would, like, focus on the sofa.
S: Yeah.
A: So I—on the leather sofa [ 13:09 ] because it’s just brown. Like… And I wouldn’t look on the floor. I did like the bridge thing; don’t look down, don’t look down, see?
S: Um-hm— [ OVERLAP ]
A: You know like Indian—iana Jones [ ACTION MOVIE CHARACTER ]; don’t look down, just keep walking? So I would go straight, and make straight toooo… the sofa. Then I will stop, and look at another point that I could focus on.
S: Mm-hm.
A: And I had to like, sort of like… [ 13:35 ] consciously tone down everything else that got in the way, see? So I could go there. But of course a person crashes into me like, like because they are moving, see?
S: And not looking.
A: So they, they just got in my path ‘cause I was going—You see I wasn’t looking at anything else. So it’s my fault ‘cause I wasn’t looking at anything else. I was just looking at the next point that I was gonna hit, which a corner of, of, of, it was like, um, kind of round that go up to the roof, like the ceiling. I think it must be like um, …something that will support the building I guess, but they made it decorate-ive kind of type, so I, I [ 14:24 ] zeroed in on that.
S: Mm-hm.
A: And I went straight for it. So, when I went straight for it and I blinded myself, I deliberately blinded myself to everything else, I didn’t see that the person crossed, so I hit the person.
S: Mm-hm.
A: And, that was disorienting.
S: Um, I—a [ OVERLAP ]
A: --Um, then I had to bite my lip, because…
S: To feel your body.
A: Yeah. I had to reorganize myself. So I stayed still, and then I tried to see if I could find it again…
S: Mm-hm. [ OVERLAP ]
A: Or, if I could find another point. But the point is, that after all the points I had to like, see where the exit was. [ 15:08 ]
S: Mm-hm. [ OVERLAP ]
A: And then that was when I kind of like stood close to like one thing— [ OVERLAP ]
‘B.’MAKES SOUND OFF SCREEN.
A: --another point, which I didn’t know what it was, just like a brown thing, which was like round. And, I just had that. I was on that. Then I closed my eyes, and I started listening to where all the steps were coming in. Like where the entrance and the exit was.
S: Um-hm— [ OVERLAP ]
A: -And you could sort of like feel where there’s a gush of wind coming in and out—
S: Yeah—
A: And, the footsteps coming in and out, like the sounds from outside, [ 15:45 ] drifting, and the sounds come inside, like when doors open and close.
S: Mm-hm.
A: This is like when you start navigating like a— not— a blind person. Where you could almost feel where there exit is or not. I spoke to blind people about this, too, because they have the same thing. So you could see like, where the exit is at. I’m now in a better point exactly like navigate there better. So they could see where, like where they could go, the entrance even they, without the stick?
S: Yeah. [ OVERLAP ]
A: And they could go right through the door without crashing into the door frame.
S: Yeah.
A: So you see where the—that thing. Also so if it’s during the day you can feel the clues. Like the warmth of your face [ 16:26 ] from outside.
A & S: In the sun- [ OVERLAP ]
A: Yeah. Like in here in 'F-' the heat um, outside it’s like a smack in the face, so you come, like when you the doors would open, that heat would gush in. And the—or the people coming in and out, you could feel what— which direction the feet are coming in and out.
S: Mm-hm.
A: And, um—And then you know that that’s the direction—
S: Mm-hm— [ OVERLAP ]
A: --that you’re gonna go towards ‘cause you gonna go outside now. [ 16:56 ] So when you go outside you’re sort of like—you cock your ears—
S: Mm-hm— [ OVERLAP ]
A: —And you cock your face like what’s the direction of where all the sounds are coming from; the direction you want to go to.
S: --Yeah—
A: And you go there. Then, then you turn your eyes on. And you try to center in on something. Now people— Ignore the people. Because these, these are just chaos. Because they are moving all over the place. Because you’re— there’s noth— there’s nothing stationary about, like, people unless you are in a nursing home and people are waiting to die. [ 17:31 ]
S: Mm-hm.
A: They— You have to— Like people are, are— They are too much. They’re— One, they’re moving all over the place. Then they’re making sounds. And they’re just—They’re, they— You have to drop the— Just go for something stationary. Like you have to focus on something stationary that would keep still; that would let you know where the environment is. Like where something ends and where something begins. Like you need to know where something ends and begins, and then your relation to it, see? [ OVERLAP ]
S: Yeah. [ 18:07 ]
A: Now, you could never do that with people. And that was a problem before, when I was a kid because I—that was when they started talking autism because I was always chasing objects rather than people, and I wasn’t interested in people as much when I was younger— [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: --And they said that. Then they didn’t want—th—They some—I don’t know. –They mentioned that one time.
S: The people were chaos, but the objects were more calming and stable. [ OVERLAP ]
A: Well, the objects are like, if you want to know where you’re at— [ OVERLAP ]
S: Yeah. [ OVERLAP ]
A: --Or something begins and ends, an object will stay in one place. [ OVERLAP ]
S: So you can figure it out.
A: Yeah. I mean unless you’re moving. Like everything’s moving and you’re moving, that kind of stuff. Like if you’re moving, everything’s moving. If you move, [ 18:55 ] like if you’re walking then everything is gonna be zippy. Or if you’re coming in and out of the car everything is gonna zip. You know like, ‘Zhooop! Zhooop! Zhooop!’ It like it almost makes a sound like, ‘Ffff!’ You know, before all the dots, all the dots have to settle in on one thing.
NOTE: IN OTHER INTERVIEW(S) 'A.' DESCRIBES HOW WHEN PEOPLE OR OBJECTS MOVE, THEY VISUALLY BREAK UP INTO DOTS, AND THEN WHEN THEY ARE STILL, THEY SETTLE BACK INTO A SOLID SHAPE OR FORM. THE EXCEPTION TO THIS IS PIXILATED T.V. AND/OR COMPUTER/iPAD SCREENS WHERE SHE CAN SEE 'NORMALLY' REGARDLESS OF WHETHER THERE IS MOVEMENT OR NOT, AND ALSO WHERE SHE CAN SEE A LARGER AREA AT ONE TIME ---LIKE HER WHOLE FACE, NOT JUST ONE TINY PART SUCH AS JUST ONE EYE OR JUST THE MOUTH. [ ***NEED TO FIND/CITE*** ]
S: Mm-hm.
A: Now with people, the dots never settle. [ 19:15 ]
S: So it’s very hard to look at their mouth, if the dots never settle.
A: You do, but you do— This type comes later after [ 19:23 ] practice. [ OVERLAP ]
S: Yeah. [ OVERLAP ]
A: You’re looking at one area, right?
S: Yeah.
A: Then you look at one area and even if it moves—you could s—after, after… Um, this is like before that. Because I told you before that that’s why I couldn’t get the mouths—the—the sounds— [ OVERLAP ]
S: Yeah.
A: Because I couldn’t look at peo— I— It was only like very late that I looked at the—
OVERLAP: ‘B.’ IS BREATHING LOUDLY OFF SCREEN.
A: --mouth. I know I said something when I was nine, but it was because I was thinking, ‘Leave me alone.’
S: Mm-hm. [ OVERLAP ]
A: --And the words just came out of nowhere.
‘B.’ MAKES A SOUND AND CONTINUES BREATHING LOUDLY.
S: Yeah. [ 20:00 ]
A: And it was shocking, because it was like telekinesis or magic [ OVERLAP ]
S: --Yeah— [ OVERLAP ]
A: --Because you thought something and all of a something the sound came. And you know the sound came because the vibration came and the sound actually kind of matched what you were thinking. And then like everybody freeze. And you could tell because they kind of ss—all their bones stiffen up. Or they like stop…
S: Mm-hm— [ OVERLAP ]
A: You know like when they say, stop in your tracks?
S: Yeah. [ 20:32 ] [ OVERLAP ]
A: They actuall— Because they set there like, like this: [ GESTURES. ]
S: Yeah.
A: Like the movements. Like a… Like a hawk, like. Like, like a bird like about to pounce. Or something like, ‘Ngh.’ That kind of thing. You see? Everything there, the movements stop.
S: Mm-hm.
A: The people’s movements stop. Because you know when all that is, is—all that is coming in, too, like you could almo—You know like when somebody raise their hand because you, you hear— [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: --the wind move. You hear it. [ 21:03 ]
S: Yes.
A: And – [ OVERLAP ]
S: And feel it— [ OVERLAP ]
A: And feel the ‘Whooosh!’ Like— [ OVERLAP ]
S: Yeah.
A: Everything’s like, ‘P’shhhooo!’ you know. Or somebody’s heartbeat, you know, or their breathing changes ‘n stuff. Or you know, that kind of stuff. But all that’s coming in. And who could organize everything like that? [ 21:22 ] You can’t. That’s why you have to s—find a strategy to, to ignore some things, even if you have to like, close your eyes to do it. To stop the information from coming in.
S: Hm-hm.
A: Because you never gonna organize the information if more information keeps coming in. [ PANTING ] Because then it’s like a dam broke and everything’s coming at you and then it’s like, it’s like sss—a one thousand seagulls screaming in your head and it’s like all these slaps in your face, going all at once. And, and the—‘D-d-d-drrrehh! Aghh! Oooh! Aghh! Oooh!’ All of that coming in, like, [ 22:09 ] ‘Ewww!’ And then, like, then everything all like, all the sights coming in all at once. It’s like all the colors hitting you. Like a hit in the face. And light and arkness and the contrast like ‘Psst! Boomp! B’mp!’ Like almost like, like your eyes almost like buuurn-ing. Like nauseous feeling because it’s all hitting you—
My son struggles throws tantrums when he gets any homework wrong. He keeps on saying "it is right" over and over again. when I let him calm down and come back to the work later he erases the wrong answer and ask me for help without any problem. Why cant he accept his wrong answer from the start?
If your son is on the autism spectrum, it may be that he needs "order" to cope with an overwhelming environment, due to sensory issues. Thus, it may be "the last straw" to get his homework "wrong". In the moment he is escalating because he may be dealing with constant stress, due to autism issues.
Also, depending on your son's age, even 'typical' kids can react this way.
Taking a break sounds like a good idea. Then coming back and correcting may actually be soothing, because he is able to put the homework "in order". Sometimes in a situation like the one you describe, it can be helpful to acknowledge how the other person is feeling, for example, "This must be frustrating/upsetting/bothering [for] you." Followed by something like, "Let's take a break." and/or, "Even though this feels awful, it will pass, and it can be fixed."
At age 9, this autistic woman spoke for meaning the first time. At age 12 she began to type. Now she describes her autistic sensory chaos and challenges.
*THE LANGUAGE AND CULTURE OF AUTISM - A case study. An ethnographic investigation.
FREE Word Transcript of this video available below, on this blog.
WORD TRANSCRIPT. TAPE 1/1 by S. A. Jones c. 2007, 2009, 2012
See Video at: http://www.youtube.com/watch?v=FkYH6056QhI
SUMMARY: Introduction to ‘A.’ and her autistm-related Sensory Issues. 'A.' was non-verbal. She spoke for meaning for the first time at age 9. At age 12 she began to type.
• NOTE: This is edited footage from several interviews, with narrative in the form of written captions.
• Mostly at condo lvgrm area, day, 'A.' with 'B.' (daughter); S. A. Jones filming/interviewing.
• KEY: ~ 'S'=Sarah. ~ 'A=Woman being interviewed (sometimes wearing dark glasses). ~ 'B'=Woman’s child. ~ 'N'=Written Narrative & Titles, etc. per screen.
Note: TV sound is ‘on’, off-screen. A. often requested it be turned on during our interviews. Also, B. often pants and makes sounds while we are talking.
N: J. H. Autism Interviews: Awareness & Sensory Issues
N: by S. A. Jones c. 2008
N: Introduction: J. H. was diagnosed with autism as a child. [ 00:19 ]
N: At age 9, she spoke for the first time. [ 00:27 ]
A: I know I said something when I was nine and it was because I was thinking, ‘Leave me alone,’ and, the words just came out of nowhere.
S: Yeah.
A: And it was shocking, [ 00:44 ] because it was like telekinesis or magic because you thought something and then all of a something the sound came, and you know the sound came ‘cause the vibration came, and the sound actually kinda matched what you were thinking [ 01:04 ] and then like everybody freeze and you can tell because the kind of-- all their bones stiffen up or they like, stop—
[ sound fades out, unintelligible ]
N: [ 01:16 ] Three years later J. H. began to type and started to speak again for meaning.
N: [ 01:20 ] Part I: Early Perception of Self in relation to others.
A: An’ sometimes they can even underst—they understand that you understand what’s happening but you n’ many times it’s like you’re not even there, but like in a movie theatre you get caught up with what’s going on [ 01:40 ] without even that. You know you are not part of the- what’s the movie on the screen.
S: And, but what you do doesn’t effect what’s on the screen, either. [ 01:50
A: Yeah! What you do don’t effect what’s on the screen. An’ except by accident or it, if it’s happens like, like by accident, see? But most of the time you experience life like you’re sitting on the movie theatre watching it all happen around you.
NOTE: Dark screen. [ 02:09 ] Fade up to next clip with sound and light.
A: …Indian Jones on the movie screen turning to you in the audience and saying, ‘What do YOU think about that, Sarah?’ All of a sudden you just have a sense of YOUR-self as part of what’s happening, see?
S: And it would be shocking if [ OVERLAP ] --if Indiana Jones turned to me and I was watching the movie [ 02:34 ] [ OVERLAP ]
A: Yes- [ OVERLAP ]
S: And he said, ‘Sarah!’ at first I wouldn’t even think he was talking to me.
A: Because you have already gotten used to the fact that you were something separate of what was going on around you, but after a while if Indiana Jones keeps stopping and saying, ‘Sarah! What do you think? What do you think?’ And you may not know how to like, interact [ 02:56 ] with everybody on the screen, or talk to everybody on the screen, or even tell him correctly what’s going on, but at least all of a sudden you realize that somehow you’re in there with him because Indiana Jones all of a sudden says, ‘Sarah, Sarah. What do you think?’ see? [ 03:15 ]
S: And I wouldn’t even think how to get his attention. I wouldn’t even think when I’m watching the movie I should get anybody’s atten-- [ OVERLAP ]
A: Exactly. [ OVERLAP ]
S: --tion.
A: Exactly this be so. Because you’re already—You’re associating it as something happening without you. [ FADE TO BLACK. ] [ 03:30 ]
N: Part II: Sensory Chaos
A: We have to ss-- find a strategy bec- to ignore somethings. Even if you have to close your eyes to do it. To stop the information from coming in. [ OVERLAP ]
S: Mm-hm.
A: Because you’re never gonna organize the information if more information keeps coming in. [ Makes ‘ssshhh’ sound] Because then, it’s like a dam [ 03:56 ] broke and everything’s coming at you. And then it’s like, it’s like, ‘Sssss.’ Owww- one thousand seagulls screaming in your head. And it’s like all these slaps in your face going all at once. And then, an’ like, ‘Didah-didah-oooh!’ [Makes more high-pitched inarticulate sounds. ] –All of that coming in like, [Makes more high-pitched inarticulate sounds. ] And then everything, all that, like all the sides coming in [ 04:24 ] all at once. It’s like the colors hitting you, like a hit in the face and light and darkness and the contrast like, ‘Ffft! Boom! Boom!’ Almost like, like your eyes almost like burr-ning; like nauseous feeling because it’s all hitting you-- [ FADE TO BLACK. ] [ 04:46 ]
N: Part III: People as Sensory Chaos: Why J. H. prefers stationary objects.
A: Ignore the people. Because these—they are just chaos. Because they are moving all over the place. Y’get’ y’—There’s nothing stationary about, like, people unless you’re in a nursing home and people are waiting to die. [ 05:10 ]
[ OVERLAP ]
S: Mm-hm.
A: They-- You have to—Like people are, are, they are too much. They are one, moving all over the place. Then they’re making sounds. They are just, they—you have to drop the—just go for something stationary. Like, you have to focus on something stationary that will keep still and let you know where the environment is. Like where something ends or begins. [ 05:40 ] [ OVERLAP ]
S: Mm-hm.
B: Making panting and loud breathing sounds off camera as A. continues to talk.
A: Like you need to know where something ends and begins and then your relation to it, see? [ OVERLAP ]
S: Yeah- [ OVERLAP ]
A: Now, you could never do that with people. And that was a problem before, when I was a kid, because I-- that was when they began talking autism because I was always chasing objects rather than people, and I wasn’t interested in people as much-- [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: -when I was younger. And they said that and they didn’t wanna—they some—I don’t know, they mentioned that one time. [ 06:09 ]
S: But the people were chaos and the objects were more calming and stable.
A: Well, the objects are like, if you want to know where you’re at.
[ OVERLAP]
S: Yeah. -- [ OVERLAP ]
A: -or where something begins or ends, an object will stay in one place.
[ OVERLAP ]
S: So you can figure it out-- [ OVERLAP ]
A: Yeah. I mean unless you’re moving everything’s moving, that kind of stuff. Everything’s gonna move if you move. [ FADE OUT TO BLACK. ]
N: [ 06:37 ] Part IV: Visual Chaos & Strategies for differentiating objects.
N: Lower third of screen, over ‘A.’ talking:
J. H. is Recalling A Visual Challenge [ 06:34 ]
A: Like when we went to Henry’s house…
N: Lower third of screen, over ‘A.’ talking:
At A Dinner At A Friend’s Home.
S: Yeah.
A: And she put, like, grapes on a Nemo plate. All—I knew that I saw—Like first I just saw a bunch of colors, bright colors. [ 07:00 ]
S: Yeah-
A: And it just looked like red-- It didn’t even look like a plate; just looked like a-bright colors. Then all of a sudden the bright colors just sort of like settled down and then there were edges. Like different colors and then they had the edges. And then you could see like, it would end in a round shape. [ 07:18 ]
N: Caption appears on lower third of screen as ‘A.’ continues to talk:
J. H. Has A 10-Year-Old Daughter Diagnosed With Rett’s Syndrome & Autism.
A: Then when the colors b--you know, settle down more, you real--, I realized ‘Oh, that’s like, Nemo.’ [ 07:24 ] Like Nemo from the Walt Disney movie?
S: Yeah.
A: And there was the fish from Nemo, see?
S: And then when did you see food on the plate? After that?
A: Like if I saw that there was like pictures. Like other colors that did not correlate with the image.
S: Of the fish-- [ OVERLAP ]
A: Yeah. The fish. [ OVERLAP ]
S: --the meal.
A: Yeah. Like there were like, weird things—I picked-- I touched it. There was something on it. Well, of course I rationalized that if she put a plate, that
[ 07:56 ] it turned out to be a plate, that there would--may be something on it. So I looked and I ss—I realized it was a grape after I took it out of its environment which was the-- [ OVERLAP… unintelligible ] many-colored plate.
S: Mm-hm. [ OVERLAP ]
A: So I knew that the Dolphin would not be able to see the grapes on the plate because she won’t be able to separate the plate; the grapes [ 08:18 ] from the plate.
S: So then a person could think, um, like a nor-- typical person could see a child like um, Nicollette or Lily and go, ‘Oh, they have bad motor skills, that’s why they can’t pick it up off the plate.’ But it could also be because the plate—
[OVERLAP ]
A: Yes-- [ OVERLAP ]
S: --has such a fancy artwork that-- [ OVERLAP ]
A: --Yes. It gets lost on the plate. [ 08:41 ] And then if it gets lost on the plate then you can’t separate the food from the plate.
S: Yes, so-- [ OVERLAP ]
A: It just becomes it’s like a mix of colors all together. So that’s why I took the grapes off the plate, and the, the—You see, Sarah, they had a tablecloth and it was white.
S: Yes, I remember.
A: See? So the grapes on the tablecloth… You could see that they were grapes on white tablecloth. See there were grapes. So that way the Dolphin could look, aim ‘cause she—you don’t—you’ll see that she looks first. And then she aim, and then she grabs. [ 09:23 ] But sh-she’s—when she’s grabbing she’s not using her eyes at the same time. You’ll see that. [ OVERLAP ]
S: Mm-hm. [ OVERLAP ]
A: I don’t know if you see that? ‘Cause she’ll grab after. Like soon after so she could grab it.
S: So she looks to get the picture and estimate-- [ OVERLAP ]
A: Yea-ss. She looks to get the picture, and then she estimates where she has to aim to grab it.
S: Mm-hm. [ 09:43 ]
A: Because she hasn’t perfected that part quite yet. But you’ll see her do that. I mean she’ll better and better af-ter. But that was why I took it off the plate. But if th—my plates are all like one color, [ OVERLAP ]
S: Mm-hm. [ 09:58 ] [ OVERLAP ]
A: See? Where the food begins, and the plate begins, and you could see where, like, the plate ends, and the food begins. [ 10:09 ]
[ SCREEN FADES TO BLACK. ]
N: J. H. Continues To Perfect Her Ability To Speak For Meaning.
N: [ 10:17 ] She Was 39 Years Old At The Time Of These Interviews.
N: [ 10:22 ] The End.
TAPE STOPS AT 00:10:27.
FYI: THERE IS A SLIGHTLY LONGER VERSION OF THIS TAPE [ 00:10:39 ], TO ALLOW FOR MORE TIME TO READ THE CAPTIONS/NARRATION.
