Thread by @ekverstania

[THREAD] I wanna show you an example of what presuming competence with nonspeaking autistic children means.

This is a lesson on fractals, prepared by Vicky Oettle, a teacher at a school for nonspeaking autistic children in Johannesburg. It's for use in a one-to-one lesson where the client develops motor skills by pointing to letters on a letterboard.

i-asc.org/wp-content/upl…

These children would normally have been in SEN schools where their movement issues were misinterpreted as deliberate misbehaviour, or a sign of intellectual impairment.

So they'd have had a teacher making beeeg eyes and using babytalk whilst teaching them 1, 2, 3 and red, blue, green and A, B, C (which they already know, but the teacher DOESN'T know, because the teacher doesn't listen to what nonspeaking people say helps children like these).

Vicky didn't know that many autistic people go euphoric over fractals (I asked her!); she just created the lesson because her husband exposed her to this a few years ago, and she's been fascinated ever since and she wanted to share this.

Let's pause this thread for a while and enjoy a random Mandelbrot image.

https://twitter.com/randommandelbot/status/1390313150684098569

A bit of jargon clarification:

speller = the apraxic (usually autistic) client who is spelling out their responses on a letterboard or keyboard

CRP = Communication & Regulation Partner (the therapist, parent, teacher, aide etc. who's conducting the lesson)

body engager = activity to keep your body engaged

OK, before I continue with this, I want to share something by a nonspeaking autistic author who learned to communicate independently via a process that started out on a letterboard with interesting lessons like this one. It's about life BEFORE he had access to communication.

The Autism Experience Challenge, by Ido Kedar. (This is infuriatingly depressing, and I have not taken up this challenge myself.)

idoinautismland.com/?p=890

OK, after that jollyawfulhorriblescreamandflailandweep thing from Ido, here's another random Mandelbrot pic to help you caaaaaalm down, and then I'll be back later to do some comparisons between presuming competence and not presuming competence.

https://twitter.com/randommandelbot/status/1390343879564484608

Before I continue, I want to pull out a bit of text from Ido's narrative.

Maybe you haven't been in the presence of significantly disabled nonspeaking autistic people before, like I have. So maybe you won't have experienced the akwardness of interacting with people who seem either unresponsive or who respond compleeeetely atypically.

Here's Ido's description of how you should behave to simulate being that super-disabled nonspeaking autist:

"To be authentically true to the autistic experience I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face."

"To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong."

"You cannot correct them. You must live with the results of their guesses."

"To experience this kind of frustration and loneliness is important."

"Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down."

How do people who DON'T presume competence usually speak to someone who behaves in this way? Ido describes it in his instructions to your friends/family, who agree to be part of the simulation:

"After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you."

"They may speak normally near you when talking to each other in lively and interesting conversations and you may listen but not participate in any way in those conversations. They may speak about you in normal speech."

"But if someone speaks directly to you it must now be in simplified speech and command oriented.
Wash hands
Go car
All done
Turn off"

"Tell your friends or relatives to respond each time you flap, stomp or jump with any of the following types of phrases:
All done
Hands down
Hands quiet or
Quiet hands
No jump
Feet quiet."

"No articles or grammar for you! This must continue until the challenge ends."

This is what NOT presuming competence sounds like.

Phew. I think we need another random Mandelbrot image now.

https://twitter.com/randommandelbot/status/1390501851548700673

Now compare those bland behavioural instructions to some of the instructions from Vicky's lesson. I understand that the context may be different, but note the grammar, syntax and vocabulary.

"Name one of the types of geometry mentioned in the paragraph."
(Correct answers would be EUCLIDEAN or FRACTAL. The speller must spell out the answer on the letterboard or keyboard.)

"Name another branch of maths, other than geometry."
(Possible answers would include ALGEBRA, TRIGONOMETRY, CALCULUS, etc.)

Later on in the lesson, the CRP asks the speller to to point to the letter indicating what must go in the blank.

"The function used to work out if a number is part of the Mandelbrot set is f(__) =z² + c."

(The correct answer is Z.)

This is a challenging question for the typical nonspeaking autistic person to answer, and NOT for the reason you may think.

The formula, once explained and understood, is not the difficult thing.

Pointing only to a single letter, Z, is.

It is easier to spell a slightly longer word, and there's less performance anxiety involved, because if you misdirect your hand, your CRP will probably realise you're becoming dysregulated, and you need a break, stim, squeeze etc. or a reset. (Reset = start again.)

But if you accidentally point to something other than Z for that answer, your fear could be they may think you don't know that Z is the correct answer.

But if you KNOW that your CRP presumes competence, that performance anxiety will be much, much less; and an experienced CRP will eventually have you answering questions in a rhythm, so that you will be less jerky and your pointing will flow better.

Eventually, you can become so smooth that you can move over to typing without the constant presence of a CRP. And then maybe you can sit down and write your second book, typing with one finger. idoinautismland.com/?p=666

Here's a chapter from Ido's second book, by the way: idoinautismland.com/?p=730

Ido Kedar is on the Advisory Council of @Communica1st, a civil rights organisation representing people with communication disabilities. communicationfirst.org/aboutus/

Ido is not unique. Although he's a very good writer (one of my favourites), he isn't an autistic savant. MANY nonspeaking autistic people can formulate their thoughts well in words, once they have the means to do so.

Here are about 100 more nonspeaking autistic writers, using a variety of forms of AAC. Some started out pointing to a letterboard, some didn't, some still use that mode part-time or full-time. You'll see several users of AAC apps like @CoughDropAAC.

https://twitter.com/ekverstania/status/1329019142133977089

Some of these nonspeaking autists have intellectual disabilities, and some don't.

Some of the people with intellectual disabilities are leading activists, respected in the disability community.

Some of them are on Twitter, reading this and ready to pounce on me and correct me if I make a mistake in what I say about them! 😆

Presume competence, and have a slice of Mandelbrot!

https://twitter.com/randommandelbot/status/1390154502200709120

When I return to this thread, I'll talk a bit about being a talkie (a person who uses speech) and hanging out or collaborating with nonspeaking people who do and who don't have reliable means of AAC.

https://twitter.com/ekverstania/status/1390674753476874243

I'll share some do's and don'ts.

In the meanwhile, here's a thread about some of my fellow autistic activists in South Africa 🇿🇦.

https://twitter.com/ekverstania/status/1378353819684376582

And here's a thing about the skill which is built during such a lesson (besides the academic knowledge).

https://twitter.com/ekverstania/status/1389682481226567680?s=19