Thread by @ekverstania

When they speak about disabled children having "challenging behaviour", what does "challenging" mean? Why do they use THAT word? (Not a sarcastic question.) Do they believe that the child is "challenging" them like a drunk person in a bar challenges another guy to fight? Or what?

Or are they projecting the challenges (difficulties) they have in understanding or coping with a child's behaviour onto the child? Like "I'm out of money and it's a challenging situation to be in." So, the OTHER person, not the child, is the one feeling like it's a "challenge"?

There's a webinar coming up with a bunch of 'autism experts', about dealing with autistic children. A bevy of white guys presenting, incl. an autistic vet; and one brown man... And on the TOP of the list of topics is "challenging behaviour".

So many people who use person-first language ("person with autism" as opposed to "autistic person") DON'T actually see the person first.

As a disabled person, I don't want my "challenging behaviour" to be the first thing people think about in terms of supporting me.

I want you to see the PERSON who has challenges and who needs support.

Imagine we framed other disabilities like people frame autism?

Deaf? Challenging behaviour=won't use speech
Paraplegic? Challenging behaviour=doesn't even try to walk
Person with epilepsy? Challenging behaviour=falls down dramatically

And yeah, people with those disabilities do get discriminated against for those things, but you don't have a conference of EXPERTS on those disabilities putting "challenging behaviour" on the top of the list.

Guess which people, besides autistic people, also display a lot of what 'experts' call "challenging behaviour"? People with communication disabilities.

Remember the story of Helen Keller, who was deafblind? People with intellectual disabilities? Dementia? Stoke survivors?

So, what do you think should be at the top of the list?

I'll come back to that question. Let me just drop something else into the thread to explain what I think is happening with these experts.

First: Research is emerging that shows us more clearly what autism actually is on the INSIDE (or what the various autisms are)—the endophenotypes. And therapies ARE being developed to match the inner experience.

https://twitter.com/ekverstania/status/1369948625099497473

But a whole bunch of 'experts' are like the Titanic that had too much momentum in the old direction, and couldn't turn round in spite of new emerging learning, and so they just keep up the same old song and dance as though they are not destroying lives by doing so.

Let me drop another thing in here.

Years ago I attended an autism conference in Pretoria, and one of the speakers was Chantel Snyman on the topic of "challenging behaviour". What she said surprised me—in a good way.

See, although she didn't really profess to understand autistic behaviour, she spoke knowledgeably about the responses of NONDISABLED people to this behaviour. Her talk was about managing THAT behaviour. She'd had Studio3 training (see @Andylowarousal).

https://twitter.com/ekverstania/status/1382717117443760132

So let's come back to the question:

At the top of the list of topics for an autism webinar is "challenging behaviour".

Most of the people who are described as having "challenging behaviour" have COMMUNICATION DISABILIES.

So...

https://twitter.com/ekverstania/status/1382721427179192322

You can see where I'm going with this, I guess, that I'm leading towards "communication first".

But here's where the Titanic experts would say with premium-grade ableism, aaaah, but we dooo encourage them to use their words! We model, we reward them for every word they say.

😒 Uhhh... I'm not gonna delete this tweet to correct the typo, OK? Typos stay unless uterrly incomprehensble.

https://twitter.com/ekverstania/status/1382728377153507332

Anyway, back to this.

This is where the Deaf and nonspeaking Autistic communities converge and support each other's advocacy goals. Both have a history of similar challenges with ableist 'experts' who want communication as long as it's on THEIR TERMS.

https://twitter.com/ekverstania/status/1382730234391330817

Did you know that Alexander Graham Bell, the inventor of the telephone, was a champion for the cause of communication for Deaf people?

Only... he was not quite the HERO of Deaf people, because what he saw as a solution to their social isolation was for them to SPEAK.

So this guy, who cared soooo much for Deaf people, was opposed to sign language.

In fact, I recently learned that Braille was discouraged by 'experts' on blindness; these 'experts' said that blind people couldn't possibly be reading those words for themselves by running their fingers over the bumps; they must have memorised what someone coached them to say.

History repeats itself. idoinautismland.com/?p=924

Deaf people and Blind people are a bit ahead of us, but their battle is far from won. Captions for Deaf people, image descriptions for Blind people and many other accommodations are still not the norm. While many rural Deaf Africans don't have access to communication...

Ableism towards Deaf people is not just a problem of poverty. For goodness' sake, America has actual ORALIST SCHOOLS! 😭 I was aghast when I learned that they exist.

And in South Africa, you can't be a teacher if you're Deaf EVEN FOR DEAF PUPILS. A hearing teacher who's bad at sign language can. 😫😡🤬💣

After years of effort by activists like Fanie du Toit, ICASA's Code for Persons with Disabilities was published in the Government Gazette on 9 April, making "breaking news" accessible to all people with hearing loss through captions/subtitles and Sign Language.

It took YEARS.

And guess what, the ableist nonsense usually starts early and gets reinforced over years. I could carry on and on about how Deaf people face discrimination all over, but lemme hand the proverbial mic to @languagefirst and just drop this here...

https://twitter.com/CodaKam/status/1382347040945008642

So here's where we were with autism. The 'experts' want communication on THEIR terms.

https://twitter.com/ekverstania/status/1382730234391330817

I saw one of those meltdown videos on YouTube once where the mother was following the screaming kid with the cell phone camera saying, "Tell me what you're feeeeeling. Tyler, tell me what you're feeeeeeeeeeeeling."

Lemme show you something. This is me. My work account is at @projectania. This is a video I made for work. Do I look like someone who can communicate well, who can express her feelings? Here's a clue: this video was EASY for me to make. No written script.

Now, I may be good at communication, but I certainly can't "tell you what I am feeeeeling" in a calm, reasonable tone during a meltdown. Sometimes I can't even speak at all.

Yet 'experts' expect highly dysregulated children who can't speak even at the BEST of times, to TALK?

So, take it from me, an articulate person who does quite a lot of talking as part of my job: sometimes I need AAC.

Many autistic people need AAC as a DEFAULT MODE OF COMMUNICATION.

Oh, but we 'high-functioning' people can't speak for 'those' children, right?

Furthermore, they don't even want nonspeakers to speak for themselves. They don't really wanna #LISTEN.

Because if they listened, they'd have to CHANGE.

But there's hope.

Because the experts are not all the same.

Some do listen.

Some challenge the behaviour of other 'experts'.

Some are noncompliant.

Some are allies to the revolution.

https://twitter.com/ekverstania/status/1378366194126888962?s=19

By the way, the advertisers of the event have now explained what they meant by "challenging behaviours".

https://twitter.com/ekverstania/status/1382716143664824321

They said, "Many times, parents don't understand the behaviors of their children or the needs those behaviors represent, that is why they find them challenging."

What's a bit disturbing is that one of the presenters is a BCBA, and those people usually don't understand either...

Lemme branch off ever so slightly here. I would never have an ABA provider as a presenter at a seminar I organise, and in the past I sometimes even withdrew from events if they had ABA therapists or known ABA apologists on the programme.

If I had an ex-ABA therapist on the programme at an autism event, their ABA credentials would not feature below their name on the conference programme, unless it relates to their conference topic, e.g. "Jane Doe, recovering ABA therapist, on How To Undo Your Job-Induced Ableism".

One of my ex-ABA friends had me introduce her to the audience as a "former child abuser".

Sooo... when a conference has a BCBA on their speaker list and they put those letters below her name like the other guys have 'Occupational Therapist' or 'Founder of the XYZ Therapy Centre' etc. then you know they VALUE that credential.

And that tells me what they're about.

So you know in some churches a guy gives his testimony, saying things like, "I used to sell drugs, I cheated on my wife, I abandoned my kids, stole a car, robbed a shop, but then I found Jesus," and the congregation says, "Praise the Lord! Welcome, brother!"

The implication of that welcome is that you are being accepted with rejoicing IN SPITE OF what you were into, not BECAUSE of it. It's not, "You stole a car? Hallelujah for that! Our very own car thief!"

Nonconsensual ABA should be declared unlawful. Initiating that process in my country 🇿🇦 is on my to-do list for the year: autisticstrategies.net/2021-autistic-…

How will that conference programme look a few years from now if we succeed in this endeavour?

"Sam, I just saw you had a BCBA on your speaker list a few years ago. An actual BCBA? 😳 This was just a few years ago, in 2021! Maaan, what were you guys THINKING?"

That's how it should be.

It should be a shame.