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
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.
We now know that one of the characteristics of Autism is linguistic differences in early childhood. Kanner's Autism was where productive linguistic development was slow, regressed, or was non-evident. Asperger's was where it was advanced or normal but weird. Echolalia and non-verbality are not typically developing, but then, neither is a five-year-old who not only knows what a "palaeontologist" is, but how to spell it. (Was that just me?) But that difference wasn't seen as a "how, precisely, was your language affected in childhood", it became "are you a highly verbal probably gifted 'high functioning' Aspie or an nonverbal probably intellectually disabled 'autist'?". And that divide didn't help. It still doesn't. Not least because it's an artificial division.
There are still people who proudly, angrily, identify as "Aspies", not least because they don't want to be tarred with the stigma of being associated with the sort of people that groups like Autism Speaks tells everyone that autists are. On one level, I can't blame them. They're desperately holding on to something which makes them "special" rather than "disabled".
It didn't help when new research showed that Hans Asperger might have gone along with aspects of Aktion T4. For those of us for whom the term "Aspergers" meant something, it was being told, all over again, that our very identity was bad and wrong and we weren't going to be allowed to have it. Here is this thing which gave your struggles in life a name, which gave you something to hang on to to be proud of in who you are, only now we've done some checking and we're not just taking it away from you, we're poisoning it and all its associations forever. "Didn't you know, kid? Your
A rose by any other name might smell as sweet, but you go and try to sell a bouquet of a dozen long-stem Goebbels' Stinkblossoms on Valentine's Day.
But that's by the by. "Asperger's Syndrome" is, for several disparate reasons, now deprecated. And that leaves one arching term for the whole spectrum.
There are terms to try and cleave distinctions into the subtle blendings, but they have their own problems. "High" and "Low Functioning" are high on that list. The consensus among Autists is that the way they describe things, they oversimplify to the point of uselessness. The "Highest" functioning autist is, by virtue of diagnosis with autism which is, remember, defined as something which causes disabling difficulties in daily life, going to be simply unable to do what may seem like simple things. And the "Lowest" functioning autist, who may struggle with self-harm and a complete inability to vocalise, might still have gifts and wisdom and insight, even if it's locked within them until the right technology or trigger is found to reveal it.
And yet, there is a quantifiable difference between someone who is odd but can mask their autism in public most of the time, and someone who can't feed themselves. It's just that we need a better term for it. Maybe "Higher" or "Lower Daily Care Needs". It's not an absolute term, and it's an average. Someone with "Lower Daily Care Needs" still needs help with things.
Doesn't roll off the tongue as neatly as "High Functioning", though. Even less than "Aspie" vs "Autist".
Tell you what does seem to roll off the tongue really, really easily, though: "Not like my child." That never seems to get old.
There seems to be a particular sort of Autism Parent who has heard of the Spectrum, but only sees it in black and white. There are, in their world, two types of autists: those who are "like their child", and those who are not.
They've mostly stopped explicitly stating that autists who are not like their child aren't actually really autistic. But sometimes the implicit statement is very, very loud.
Look, at one level, they have a point: those who have more need of support and less ability to care for their own needs do need some way of being described. And it's a human and linguistic thing that people want something short and snappy to do so.
The trouble is that the people who are loudest about this who aren't themselves on the spectrum seem to be doing so with the implicit goal of dividing autists into those who need and deserve help, and those who basically don't. Those who can speak for themselves, and those who need their parents to speak for them and how dare you other sort of "autist" pretend to have any insights or concerns.
And I'm alarmed by how many of these Autism Parents have power, whether because they're, say, politicians, or the head of an Autism Science Foundation who just happened to be a former board member of Autism Speaks who only left because that organisation became a bit to antivaxxer for her to stomach (well done, have a cookie), and is on tape describing, in front of her autistic child, how she sometimes felt like driving her car off a bridge with her child in it.
The thing is, I think we need terms for that. I mean, how could we, as autists, have a problem with Autism Parents? Our parents are autism parents. Some of us are autism parents. Some autism parents are autistic parents.
But there's some who aren't that. They're crusaders for exclusion and shutting down who they see as "the wrong sort" of "autists". By which, typically, they mean any autist who is able to speak for themselves, and especially who sees that very ability as a gift and a duty to use on the behalf of those who can't.
I guess where I'm going with this is: an open reply to Alison Singer. I sympathise with your problems and your difficulties with your autistic child. I really do. I also sympathise with her difficulties. And what I would like is to be able to know what she thinks, and to improve her life, and your life.
And, yes, there needs to be some sort of agreed way of describing the severity of affect of autism: there needs to be some way of describing succinctly that one person needs more support than another.
Needs aren't static. I might be giving a public talk in the afternoon, and be unable to decide what to have for dinner in the evening. (Not "ambivalent" or "indecisive", but "paralysed".) I might write code that will be, unknowingly, relied upon by thousands of people, and also unable to remember which bills I haven't paid yet. My functioning is uneven, and when I've run out of spoons, all bets are off. And I might not even know what my own support needs even are.
And, quite frankly, when it comes to deciding who is valid in being allowed to speak or not, I do not trust you or your ilk to make that decision. Not least because you've clearly made your decision, and the answer is that it's you the parents, not us the verbal autists. Or, if you're charitable, that you want "profound autism" as a binary thing, where every autist can be divided into "profoundly" autistic or, as far as you're clearly concerned, "not" autistic.
I don't trust you, Alison Singer. The organisation you made your name in, Autism Speaks, is a self-serving behemoth which does, as far as I can see, almost exactly nothing for autists. Its purpose isn't anything to do with helping Autists. It was created and is maintained for you, Allison.
I don't trust you, Alison Singer. I remember Autism Every Day. You have been complicit in making autists who find your material first, hate themselves. What you have said, the organisation you have lead, has made autistic people see themselves as broken, as monsters. You have done harm to autistic people.
When autistic people are upset at terms like "patient" and "intervention", it's because people like you refuse to accept anything less than ABA, a theory which was designed by a person who literally said that autistic children aren't people, merely person-shaped. It's people like you who are responsible for the Judge Rotenberg Center still existing; a place where disabled children are tortured with strap-on Tasers for crimes like "saying 'no'," and "flinching because they fear getting an electric shock."
I want autists with high care needs to have a voice. I want the families of autists to have their voice. And I'd quite like also to be allowed to have a voice.
But here we get into the Tolerance Paradox: Despite what you say, I don't want to silence you because you are the parent of an autist. What I have a problem with is your evident decades-long campaign to shut down my voice and the voices of people like me.
Wow. I got angrier than I thought I would. Time to press "post", I guess.