Thread by @ekverstania

Imagine that, starting in the 1970s, researchers came up with the idea that the solution to autistic people's problems was to surround them with neon yellow.

They do gazillions of experiments subjecting autistic children to neon yellow and congratulate themselves on the results.

And then, about 20 years later, the children are grown up, and in large numbers they start saying how much they hate neon yellow.

The neon yellow therapists say it's just a few opinions. so someone does a vast survey and find that 97.8% of autistic people hate neon yellow, and they prefer less intense colours.

The autistic people now want neon yellow therapy stopped, but by now there are 300,000 businesses that somehow make mobey money from neon yellow.

Whaddya think should be done about Neon Yellow Therapy?

This thread is not about neon yellow.

And I apologise for all the typoing mistaks, BUT...

Can you see what comes next in this fictional story?

Next comes the part where the neon yellow industry digs in its heels and says, it doesn't matter what you people say you want or like, because:

"You must have had a bad experience with the Old Neon Yellow Therapy. We don't paint it on the ceiling anymore, only the walls and furnishings and utensils are neon yellow nowadays."

"Parents have a right to choose whatever therapy they want for their child. You're a childless adult, so you're disqualified from commenting, because this is about children; and if you were a child, you'd be disqualified because parents speak on behalf of minors."

"Children have a right to Early Neon Yellow Therapy. If you don't start as early as possible, the child will move further and further out of reach." 😢

"Nowadays there are so many variations, that parents can more easily select what's right for their child. Pure neon yellow is on the way out. We have neon yellow with pink spots now, and there's even research on neon yellow with PURPLE HEXAGONS!"

"You don't understand! This is trauma-informed neurodiversity-affirming rights-based intersectional child-centred individualised play-based positive adaptive Neon Yellow Therapy with pink spots and purple hexagons!"

"You're high functioning. You don't speak on behalf of the low functioning ones. The very fact that you are using words disqualifies you from arguing against Neon Yellow Therapy."

"You don't understand the chromomodulation feedback cycle of conjunctional hyperenhancement lumen frequency synchronisation. Why don't you become a Board-Certified Neon Yellow Therapy Professional, and then you can criticise?"

"The existence of Board-Certified Neon Yellow Therapy Professionals negates your argument."

"Some parents with autism have children with autism thriving in Neon Yellow Therapy."

"Evidence that people with autism are against Neon Yellow Therapy is not the kind of evidence that should inform a clinician's choice to prescribe it."

"At the Neon Yellow Research Institute, we value all well-informed criticism and consider it in the constant improvement of Neon Yellow Therapy."

https://twitter.com/dellcartoons/status/1654733041976090624?t=L87TZrU9IMFy6imsSOOWcw&s=19

"This isn't about whether or not you like the colour. We all have to be exposed to things we don't like at times, and this is about the THERAPEUTIC use of neon yellow by trained professionals. If it didn't work, we'd stop using it."

https://twitter.com/ekverstania/status/1654668530061656064?t=L87TZrU9IMFy6imsSOOWcw&s=19

I mean, I could go on and on like this—the apologists of odious autism therapies do—and I'll probably add more of their arguments later.

But what's happening here? What's the game?

They're stalling you, distracting you and wearing you out so they can avoid the actual issue.

The actual issue is that in devising their hypothesis and experiments, and ultimately their methods and the industry built on them, they skipped a crucial step: the first step.

https://twitter.com/ekverstania/status/1654526961262133258?t=lPcFAs36PTSjADbPDWteIA&s=19

And because they now have momentum and a cosy place in this artificial ecosystem, they're not prepared to stop.

https://twitter.com/ekverstania/status/1654527508228734977?t=lPcFAs36PTSjADbPDWteIA&s=19

They don't wanna do this.

https://twitter.com/ekverstania/status/1654530021900386304?t=lPcFAs36PTSjADbPDWteIA&s=19

They want to add another next storey and mend the plumbing instead of demolishing the building and flattening the ground to build a new one on solid foundations.

https://twitter.com/ekverstania/status/1654530444518383617?t=lPcFAs36PTSjADbPDWteIA&s=19

So, what can we little do against the charge of the multibillion dollar yellow neon light brigade?

I dunno about you, and I understand that our circumstances are different, but I'll tell you what's working for me right now.

But first, I need a break, so in the meanwhile, here's one of my favourite drawings.

Oh, and just to make it absolutely clear: this thread is a metaphor for another set of therapies that are imposed on autistic people in the real world. There isn't really a thing called Neon Yellow Therapy.

https://twitter.com/ekverstania/status/1654764656672514048?t=4nQiSCNbWskOGcT0yS4x4w&s=19

By the way, for interest's sake, I did a bit of searching and I found a small study one colour preferences done with autistic boys, and unsurprisingly, they liked yellow far less than did the non-autistic boys in the study.

I happen to like yellow a lot, but egg yellow specifically, not neon yellow.

So lemme give you the short version of what I am doing as an activist in response to the Neon Yellow brigade's constant deflections and relentless well-funded work of wearing us out:

I'm not making that my primary battleground.

I'm not focusing first and foremost on what autistic people don't want.

I'm focusing on what autistic people DO want, and advocating for THAT.

https://twitter.com/ekverstania/status/1654527726798110739?t=QQWrXsulO86RNDP7rsRcRQ&s=19

I'm creating connections with people who are prepared to listen to THAT, so that they can become allies.

https://twitter.com/ekverstania/status/1652959825582608385?t=QQWrXsulO86RNDP7rsRcRQ&s=19

I'm partnering with parent-led organisations run by people who share autistic people's own goals—such as the goal of getting access to communication for nonspeaking autistic people, in ways that they—the nonspeakers themselves—deem helpful.

autisticstrategies.net/asn-allies-str…

I'm establishing connections for nonspeaking autistic people to work directly with professionals in power, to guide those decision-makers in ways that make it easier for them to fulfil their service goals.

https://twitter.com/ekverstania/status/1378366952360587268?t=Kyq__3gspRB-mXwy4v4e8Q&s=19

You have to be from a special level in hell to sit in the same room as nonspeaking autistic advocates as they painstakingly communicate via AAC, and then to tell them that your ideas about therapy are more important than robust communication access for others like them.

And yes, I know that some of those special people from hell do work in the autism industry. But...

In my country, you're going to look mighty uncool in front of everyone present if you hear the message from nonspeakers in person, if you see their supporters who use speech deferring to them, and you then choose not to support their revolution.

https://twitter.com/AfricanAutists/status/1646202655054741505?t=-gtkNJAgOJFEPjgDLQs2VQ&s=19

One thing I have learned is that for autism industry people who have held unhelpful ideas for a long time, meeting nonspeaking advocates in person is often essential.

https://twitter.com/ekverstania/status/1652959836038918144?t=-gtkNJAgOJFEPjgDLQs2VQ&s=19

For me, meeting nonspeaking advocates like David, Zekwande and Leonardo in the flesh strengthened those friendships, but it made no difference to my conviction about their rights and the importance of supporting their revolution. That conviction was there already.

But some people can watch this...

https://twitter.com/ekverstania/status/1652961445624127490?t=-gtkNJAgOJFEPjgDLQs2VQ&s=19

...or read this...

akhaswords.home.blog/2020/10/03/the…

...and say it's great and amazing and all, and then go back to their neon, pink and purple lives as though the words they've just experienced are from fictional characters in a fantasy novel.

For those people, listening to nonspeakers in person in the same room, is vital.

So, how can you translate all this into something YOU can do to help save the world, within your own capacity and talents, without utterly destroying yourself?

Later I'll give you some tips, but I now need to go, because it's nearly midnight and I must be in the cold autumn sea before sunrise tomorrow, and I have yet to make my bed so that I can sleep.

So here's another one of my drawings to mark this coda.

Tip Number 1:

If you want to advocate for the rights of nonspeaking autistic people without being nonspeaking yourself, check your motivation.

I'll come back to this point later, and maybe explain how I got into this area of advocacy in a separate thread.

In the meanwhile, though, think about what you are trying to achieve. Some activists (and I don't mean just autistic activists) have become so accustomed to fighting that they find it hard to work towards peace.

https://twitter.com/ekverstania/status/1333880302087905282?t=moQcIC0rnwxgNNIQwartXw&s=19

There was this one guy on Twitter (he left eventually, burned out) who used to tag me into conversations when he was making his sweary contribution to dogpiling an unhappy parent of a child with high support needs.

The twar typically started when the parent made some kind of ableist statement or used some taboo terms or concepts ("low-functioning", "my child got autism from a vaccine injury" or even just posting a puzzle piece and using person-first language).

By the time I got tagged in, this guy had run out of arguments, and I was brought in as a final weapon of sorts—from his perspective, anyway.

It wasn't a role I was happy to play.

He didn't read the writing of nonspeaking autistic people in any depth himself. He only knew that I did. So tagging me in, he hoped, would take the fight to a new level where 'we' could win, because with me doing the fighting, he wouldn't be quite so out of his depth.

Except...

I didn't wanna play his game.

I'm a communication rights activist.

I want you to actually listen to nonspeakers, not just use the hashtag #ListenToNonspeakers.

You can't just throw in the concept like an ace from up your sleeve when you're losing an Internet fight.

I mean, what's your goal? There are an estimated 30+ million nonspeaking autistic people on earth who don't have access to a suitable means of communication. Do you want to change the world for them, or simply have the last word in a fight?

https://twitter.com/ekverstania/status/1655802374714261510?t=srEE0qkXpbATDdSOcSMVHg&s=19

More later. Meanwhile, here's part of one of the drawings I worked on today.