Thread by @ekverstania

So, my friend just got accused of using the Dark Web playbook because she calls herself 'severely autistic'. OK. I don't use the term 'severe autism' myself, but that's her way of expressing the extent of her difficulties.

https://twitter.com/ekverstania/status/1396775825169698818

I kinda feel that we should hear people out when they need a lot of support, and not constantly deny them that support just because they frame their experience using taboo words.

Here's the thread that evoked that accusation.

https://twitter.com/ekverstania/status/1422590142028582919?s=19

I have something to say to the "Ah, but that's not autism, that's comorbidities!" crowd:

I used to say the same, except that I wouldn't (and still don't) use the word 'comorbidities', because that would imply that autism is the primary morbidity.

The thing is, it's sometimes rather hard to tell where the autism ends and all these other conditions begin.

Is Ido Kedar even autistic then? Many people with a diagnosis of Classic Autism (Level 3 Autism) have this presentation.
idoinautismland.com/?p=496

What about Damon? Which part is the autism? And which part is the 'comorbidities'? Damon and Ido are much the same in their experience of... dare we say... autism?

tania.co.za/reframing-seve…

How about Jordyn? Is this autism or something else? In fact, all those other nonspeaking people in the same thread... Which part of their experience is the autism?

https://twitter.com/ekverstania/status/1096741627907969024?s=19

Damon clearly feels that his experiences are validated by this research...

https://twitter.com/ekverstania/status/1369945564910125058?s=19

... that frames autism largely from a movement perspective. frontiersin.org/research-topic…

With all this being so fuzzy, I have the following recommendation... Many autistic people are loath to call autism a disorder, because that throws out the baby with the bathwater, and suggests that the autism needs treatment of some sort.

But there are some things that DO need therapy. And many nonspeaking and minimally speaking autistic people refer to those things as 'autism', even though they are things which autistic people like me don't experience.

So... Should these nonspeaking autistic people stop calling their problem 'autism'?

Or should people like me stop calling myself autistic, because I don't have apraxia, and my impulse control issues are different from theirs?

Here's the thing: the autism umbrella is very broad right now, and although there are many common experiences among speaking and nonspeaking people (even though we may look different on the outside), there are also many differences. But the one thing we are ALL trying to do is...

...to escape the damage done by The Experts who misinterpret ALL of us.

So, I said earlier that I have a recommendation.

https://twitter.com/ekverstania/status/1423044615704399872?s=19

I recommend that we simply call autism a phenomenon. I know it's very bland, but it has the advantage of not coming with any "therefore you should" connotations.

If autism is framed as a "gift", we are expected to celebrate it.

If autism is framed as a "disease", we'd be crazy not to treat it.

If autism is a "disorder", we need therapy for it.

And so on.

At the same time, let's give some support to people who feel impaired by a bunch of things they call 'autism', and which clinical staff often ALSO call autism.

When someone comes into the emergency room having been turned away from two different hospitals already, are you gonna first language police them, and then send them away if they wrongly say, "My tummy has migrated into my chest," or are you going to examine them and treat them?

There's this too. Some people can't get to the point of hearing out a mother, because she first needs to pass the Neurodiversity Language Exam. (I've been this gatekeeper myself.)

https://twitter.com/ekverstania/status/1333798309362683910?s=19

I know that using the wrong words harms our community.

But jollywell, so does not listening to a lot of people who use them.

Would they get help more readily if they simply stopped communicating at all? My friend is trying to avoid getting incarcerated in an institution, or restrained in a hospital again, or assaulting someone and ending up in prison, all while trying to get her medical needs met.

She's trying to explain to the janitor that she didn't mean to spill the rubbish and she can't see where it is, to pick it up, because she's blind; but he just says that's no excuse.

So maybe you can give her the magic glossary, the Correct List of Words that unlocks Safety Level 3, where all these problems get resolved, and where she isn't automatically seen as using a "Dark Web playbook" just because her description of herself is desperate and provocative.

And by the way, her self-deprecation drives me batty sometimes too. Her self-loathing, her accusing me of hating her when she goes psychotic once a month...

But she knows by now that for me, blocking someone is often boundaries management. I'll unblock again later. Blocking doesn't end a friendship.