Thread by @ekverstania

[THREAD] If you're an autistic activist who speaks, and you've recently joined the fight for the communication rights of nonspeaking autistic people, I want you to know that you're going to have opposition, particularly from ABA people. This thread is to help you in that fight.

Your priority shouldn't be policing person-first language and puzzle pieces, or people calling themselves 'autism moms'. Those things can wait. Your focus should be on communication access for their children. You need to SUPPORT them in getting that. They may not know it exists.

I have been in this area of advocacy for several years now, as a speaking autist advocating for nonspeakers' rights, and I am able to share some of my learning with you on what works and what doesn't. You win some, you lose some. Let's learn together.

The ABA guys are the main people who are going to try to stop you from empowering nonspeaking people, so you need to be prepared for them.

You don't necessarily have to fight; you can also walk away, because sometimes there's a better way to spend your energy. But there are times when it is important to counter them, because there may be other people who are watching who are prepared to learn.

Also, some ABA therapists DO leave the cult. I know several who did. Two of them became close friends.

You don't have to win the argument that day; you just need to plant a seed. Cognitive dissonance must run its course.

For a start, if you haven't seen it before, please watch Damon Kirsebom's short video 'Reframing “severe” autism' so that you can understand some of the struggles that many nonspeakers face from the inside. (This is before we even get to ABA.) tania.co.za/reframing-seve…

Please note, Damon communicates independently, without support.

This is important, because many ABA people say the methods Damon used to develop independent communication shouldn't be allowed.

ABA enthusiasts have academic battles about these methods, publishing books, speaking at conferences and in all ways trying super-hard to silence non-speaking autistic people who speak out about what helps them and what doesn't.

Real lives are impacted.

https://twitter.com/ekverstania/status/1274754394286952448

This little blog post kinda sums it up: tania.co.za/aba-silences-a…

So, that's the one thing you'll get from the ABA guys: the communication training methods that nonspeakers say are helpful, are not allowed.

According to the ABA crowd, nonspeakers must have ABA instead. If they can't be ABA'ed into talking, they must have ABA using picture cards, using a method and picture vocabulary PECS; alternatively, they can use a sign language called Makaton.

Allow me to clarify:

PECS is an ABA method, but many people use the term incorrectly. Sometimes a parent may say he's using PECS with his child, while he's actually just using picture cards, not the full-on PECS method.

Also, Makaton isn't bad; but it is often either inappropriate or insufficient.

So, firstly the ABA guys say the methods that so-called "severe" people say works well for them to develop independent communication, are bad.

Secondly, they will say that ABA is not for 'high-functioning' people like you, but for people with "severe" behavioural problems.

And those tend to be autistic people who don't speak.

The ABA guys will tell you that as a speaking autistic with a job and the ability to eat and go to the toilet unaccompanied, you don't have the right to speak for nonspeakers.

Somehow they think that if you can type on Twitter or Facebook, you must also be able to speak easily, and you can't possibly be incontinent or have a movement disorder, or... 🤨

Anyhow, while they say that speaking autists can't talk on behalf of nonspeaking autists, they ardently insist that people like them (who are mostly not autistic and definitely not nonspeaking), can speak over everybody, because reasons. 🤔

(Don't ask me how the logic works.)

Guess who can speak about the nonspeaking autistic experience?

Actual nonspeaking autistic people.

Here is what some nonspeaking autistic people have said about ABA.

(There's a lengthy introduction; their words are at the bottom.) tania.co.za/non-speaking-a…

ABA people may also say that 'behaviour is communication' and that they can read what an autistic person's behaviour is communicating, and redirect the behaviour towards more appropriate ways of achieving the same thing, and then reinforce those more appropriate ways. Now...

It would be cool if they actually COULD do that.

Like, my friend autistic Benjine understood why I often hit my legs or scratched them hard when I had sensory hyper- or hyposensitivity. She taught me to use the right kind of brush, and to take magnesium, potassium and other things to treat and prevent my overload.

But...

Although ABA is an abbreviation for Applied Behavioural Analysis, these 'analysts' are not trained in the real function of autistic behaviour, so they are not equipped to do the 'behavioural analysis' properly.

Here's an example of how way off the ABA guys' interpretation of nonspeaking autists' behaviour can be: tania.co.za/behaviour-is-c…

Right, that's the study material for today. More later, Deo volente.

Here are some cute little green spiky balls that fell from a tree next to our house.

Something has been bothering me about this thread, and I feel like I have to to add it before I go to bed.

I think that because this thread focuses on dealing with opposition, it creates a skewed impression of what advocacy in support of nonspeakers is about.

The warrior mindset is helpful if you encounter opposition, but your default Einstellung should be one of planting, building, growing, creating, learning and collaborating. tania.co.za/advocacy-cultu…

In support of this, you may want to follow @Communica1st, a civil rights organisation that represents people who can't rely on speech to communicate.

They have several nonspeaking autistic people in direction-setting roles.

Later I'll talk about other groups you can support.

Good morning! Here's our dhanya (coriander/cilantro) that's turned itself into a wedding bouquet. 🙄 I don't know how long it will be before we have leaves to eat again.

Let's continue learning about advocacy in support of communication rights of nonspeaking autistic people.

Communication is a human right.

@Communica1st chose a good name for their organisation. The name makes the point: #CommunicationFirst

If you are advocating for people's communication rights, this is a good hashtag to use.

If you stand by what nonspeaking people say about themselves and you share their own words, you can use the hashtag #istandwithnonspeakers.

Later I'll provide some links in which you'll see more examples who's part of this broad term, nonspeaking.

The principle of #NothingAboutUsWithoutUs (nihil de nobis sine nobis) applies here. You can look up the history of this saying.

It forms the basis of the #CRPD.

Now, here's something you need to be clear about: if you are a speaking autistic who occasionally loses speech (like me), you can't speak on behalf of nonspeakers who use Augmentative and Alternative Communication (pointing, typing, gestures etc.) unless they asked you to.

You can only share what they have said, and speak for their right to 'speak' for themselves.

It may help to get a glimpse of understanding of what it's like to be a nonspeaking apraxic autist, though. I am going to share a simulation with you devised by a nonspeaking autistic author and activist, @IdoInAutismland.

I have been procrastinating on doing this simulation myself (you'll be able to guess some of the reasons when you read it). If you're a speaking person and you take up the challenge, Ido would be interested in your feedback. Very few people have done it. idoinautismland.com/?p=890

OK, that's enough for now. I'll add more materials to support your advocacy efforts later.

Here are some flowers on our dining room table. I picked them in various neighbours' gardens while they're all stuck in Europe. They get pics from me via WhatsApp.

Right, I'm back. Here's a pic I took in a glade shortly after dawn this morning.

Before I continue with guidance on advocating for the communication rights of nonspeaking autistic people, here is a short test to see where you're starting out.

These questions are for autistic people who speak and who'd like to become more involved in advocacy for the communication rights of nonspeaking autistic people, but others are free to answer as well.

10 QUESTIONS

1. Name two of your favourite nonspeaking autistic writers under the age of 25 who are women or girls, and say what you learned from them.

2. Name two Black nonspeaking autists who have written about #BlackLivesMatter and say what you learned from them.

3. Name two nonspeaking autistic people in Africa who have written about what it's like to be autistic.

4. Name two nonspeaking autistic people who have written about their use of FC (Facilitated Communication).

5. Name two nonspeaking autistic people who have written about RPM (the Rapid Prompting Method) being part of their learning journey.

6. Name two nonspeaking autistic people outside the USA who use Spelling to Communicate.

7. Name two nonspeaking autistic people who have written about the distinction between being nonspeaking and nonverbal.

8. Name two nonspeaking autistic people who have presented to the United Nations.

9. Name two nonspeaking autistic people who serve on the boards of registered disability organisations (autism-specific or anything else).

10. Name two nonspeaking autistic people who have spoken out against ABA.

If you're kinda stumped right now and unable to answer even one question on the list, then don't worry, you are where I started out as an advocate, without a clue about what nonspeaking autistic people have to say, or even that they have something to say at all.

Once I realised that nonspeakers are "like us" on the inside, and that my country had no reliable way of providing them with a means to express their thoughts, I was devastated and in a daze for months.

I then started working with others to change that.

There are now a handful of autistic people in my country 🇿🇦 who can communicate their thoughts in words.

But there are still many to be reached locally, and millions of nonspeaking people throughout the world.

I am hoping that by this time next year you will be able to confidently answer questions like the ones I provided above, centring the words of actual nonspeaking autistic people.

Getting answers to those questions can take time, but I can make it easier for you.

There's buried treasure all over the Internet, but it helps if someone tells you where you could start looking.

So here you go.

This thread contains hidden answers to all 10 questions except for the first one, because I can't tell you who your favourites should be and maybe your favourites won't appear here anyway.

https://twitter.com/ekverstania/status/1101777600903610370?s=19

Now, to avoid repeating myself, I'd like to also link to the middle of another deep-dive thread which will be useful to you to understand more of the communication challenges, as well as some approaches which nonspeakers recommend to develop their skills.

https://twitter.com/ekverstania/status/1331327577361887233

And since I am busy connecting up all these Twitter rabbithole threads 🐇🧵, let me drop some more study and revision material for you here...

https://twitter.com/ekverstania/status/1343097991046066176?s=19

I want to come back to this tweet.

https://twitter.com/ekverstania/status/1333798309362683910

If you see yourself as an autism-is-not-a-disorder-but-a-difference activist, and if an "autism parent" is going on about biomed stuff, and that bothers you, then...

...please focus on what you are trying to achieve.

Do you care about their kid's health? Yes or no? Much as it may irk you to do so because your knee-jerk reaction is "omgthatisnotautismitscomorbids", HOLD BACK. These people are working with a different definition of 'autism'.

You do NOT have to do terminology alignment right away. You do NOT have to argue paradigm right away. Those things are important for working together in the future, but they are not a big deal in the beginning.

What do I mean by paradigm? I mean what we think autism is and how it fits in with our view of the world and of society — and what we think should be done about this thing called 'autism'.

https://twitter.com/ekverstania/status/1126067990221529089

My own paradigm of autism has evolved a lot, and some of that evolution came about because of what I learned about the complexities of biology. It has also changed based on what I learned around the concept of 'disability' over the past 12 years. It is likely to keep evolving.

So I think it somewhat arrogant to attack someone's paradigm when I can actually judge my OWN paradigm of a few years ago and say, "Woah, I think I have grown a bit. Those videos I made in 2015 had a few ideas in them which I now regard as quite ableist."

If you're curious about "those videos", here's one of them. I don't mean it's all bad. I just mean, some things could be improved.

So, I don't start with paradigm, although paradigm is important.

I start with the person.

There's a motto that I like to work with (although I think I sometimes use it outside its original scope):

"First the people, then the direction"
— Jim Collins

Search for the common ground.

The common ground is a common concern.

If you have no common ground whatsoever, there is quite often no point in wasting your energy on each other. (There are exceptions, but I won't go there now.)