Who Speaks for Us?

 David Cameron Staples (Catsidhe) sents us Who Speaks For Us? on Dreamwidth

Trigger Warning for mentions of the Judge Rotenburg Center, Autism Speaks, and related policies.

It is the second of November as I write this, because of course it is. So... I apologise for not leaving myself time to make this shorter.

Or to the point, whatever that point is. (Edit: I've figure out what the point is, and removed a half-dozen side tracks. For future reference, they included

• How closely do ADHD and Autism overlap? How many of the understood common symptoms of one are actually symptoms of the other? Can a symptom be common, but show up in different ways depending? Can one have both versions? Oh wow, I'm almost writing that essay just in the asking of the questions.
  
• What does "Neurodiverse" mean anyway, and who is included within it?
  
• Are there Neurodivergent conditions which aren't inherently disabling? (I'm thinking especially of Synesthesia.)
  
• What does "Disability" even mean?

So. Anyway. Incipit:

Who speaks for us?

In the beginning there was Autism.

Then Asperger's Syndrome was discovered, and it was technically a different thing.

And that's the first complication, because that division created a barrier between autists.

It's a Dream Life

 David Cameron Staples (Catsidhe) posts It's a Dream Life

It's a Dream Life

Have you ever had that dream?
You know the one:
You have a job to do, but you're not quite sure what it is.
Or how to do it.
Or why it's important.
Or what to do it with.
Or where.
But you know it's important.
And everyone's angry.
And it's your fault it hasn't been done.

Have you ever had that dream?
You know the one:
Someone's telling you something really important.
But you can't hear them.
And when you can, you can't understand the language.
And when you can, you can't hold on to the meaning.
And when you can, you forget it right away.
And you remember much later that there was something important.
But it's too late.

Other people say they dream of flying.
I dream of dreaming of swooping and gliding.
Other people say they dream of talking to important people.
They dream of being there with them:
Treated as important,
Their opinions listened to,
Their anger valid and relevant,
Their ideas acted upon by others.

Have you ever had that dream?
You know the one.
Everyone's angry with you, but you don't know why.
Nobody will tell you what you said.
Nobody will tell you what you did.
Nobody will tell you what rule you broke.
Nobody will tell you what you should have done.
Nobody will accept your apology for ... something really bad, apparently.
It's all your fault and you have no idea why.

It's a Dream Life.

But I don't feel disabled

Catsidhe (David Cameron Staples) posts But I don't feel disabled



(Self-)Advocacy is hard, because it doesn't feel, most of the time, like a disability.

That needs unpacking.

The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.

Because what is "disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.

At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?

Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?

Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that count as a disability?

Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.

Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.

And I don't feel disabled. Usually.

How I am is how I've always been. In the normal course of events I am just how I am.

Normally.

And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.

But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.

And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."

Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.

Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.

Christ, I can't even get some of them to answer my emails.

But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can, so that the next poor bastard doesn't have to.

It's just that I don't feel like I belong in the group for whom I'm doing it.

Script the script, I pray you, trippingly on the tongue

Nightengale writes Script the script, I pray you, trippingly on the tongue


November first is Autistic Speaking Day.

https://autisticsspeakingday.blogspot.com/

I’ve participated a few times before
Writing the brochure I want to read in the world (https://nightengalesknd.livejournal.com/107769.html)
Autistic ear, autistic voice
https://nightengalesknd.dreamwidth.org/100586.html
Speaking from the shadows
https://nightengalesknd.dreamwidth.org/88699.html
Autistic speaking day, 2012
https://nightengalesknd.dreamwidth.org/84015.html

And here goes

I speak. I speak a lot. Frankly, I’ve described myself as aggressively verbal, and I’m not paying myself a complement when I say it. I don’t always know when to stop speaking. I don’t always hear the pauses in conversation. As a child, other children told me I sound like I swallowed the dictionary. I always found that ridiculous because I’d never read the dictionary. I did read the encyclopedia, although after the age that insult mostly wore off. I love words and looking for the right word and making up a new word if there isn’t one.

Most autistic people speak. I’ve seen an estimate that 20% of autistic people don’t speak verbal words, but I haven’t found the study(ies) to substantiate this. I did a chart audit a few years ago of 96 consecutive autistic patients age 3 or older and found about 80% used some verbal language and 65% used verbal sentences. Obviously, verbal people are more likely to be diagnosed at a later age, if at all.

Autistic people who speak often speak differently from neurotypical people in ways that get noticed.

Today I’m going to talk about scripting.

Lots of autistic people use scripts, at least some of the time.

Script (noun): the written text of a play, movie, or broadcast. (google)
Script (verb): to use memorized phrases or larger strings of language for a variety of communication and self-regulation purposes in a way that is not typically used or expected by neurotypical people (Nightengale)

Repeating lines from a TV commercial would be scripting. Coming home from school and repeating sentences spoken by the teacher would be scripting. So would learning to say “I’m OK, I’m OK” as a strategy to calm anxiety.

So would writing out a plan ahead of time before calling a store or doctor’s office to ask questions

So would be coming up with the language from scratch to answer a question or tell a story, and then using that same language many more times whenever the question is asked or the story is relevant.

I don’t use a lot of scripting that is generally flagged as a script. At least, I don’t think I do. But I’m realizing more and more just how many scripts I use.

Context is everything

“Speak the speech, I pray you, trippingly on the tongue”

What does it mean? How will someone respond?

Well, if I’m onstage playing Hamlet, this is expected language. But assume I’m not.

Read More Here

Autism 101

David Cameron Staples (aka Catsidhe), Autism 101 on Catsidhe

Autism 101

I did a talk, and the second time I gave this talk, it was recorded. (Well, most of it. The last couple of minutes of Q&A were dropped because the first five minutes was spent swearing over getting the slides working. But that first five minutes has been cut, so it's straight into the talk.)

It's called Autism 101, and seems to have been well received.


It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.

And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.

But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).

And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.

This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.

Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.

Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.

Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.

Amplifying Autistics

Nightengale, Amplifying Autistics on Dreamwidth

Amplifying Autistics

I’ve stopped reading books about autism written by non-autistic people.

Neurotribes? I’ve read two dozen reviews. I haven’t read the book. Yes, I know it’s well researched and well written. I’m not convinced it has a lot of information that would be new to me. And I’m tired of reading books about autism written by non-autistic people. Also, I’m tired of the calls for quotes on autism now going to Steve Silberman. Yes, he’s done some good ally work. Yes, it’s better than the quotes going to Autism Speaks. No, it’s still not OK.

Uniquely Human? I skipped that one too. I’ve read other Prizant. He talks a good talk, but he still clearly sees non-autistic ways of communicating and playing as superior. He’s not as much of an ally as he tries to say he is.

I still read research articles written by non-autistic people. I have to stay up to date for my work. I don’t always know the neurotype of researchers, anyway. Maybe someday, I can extend my policy to research.

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