Why I Am Angry

SPOILER: The following contains graphic, PTSD provoking descriptions of the use of restraints.

The following is from an e-mail exchange with someone from my state Autism Society (with slight revisions for improved clarity).

On Mon, 27 Mar 2000, you wrote:
> Hi Laura
>
> It sounds like that you had a bad couple of weeks? Can I help with anything?

I doubt it, given that the issue is systemic and not personal, but you might get ranted at.

How do I put the pattern of things into words? About a year ago I founded a small fund for high functioning autistic adults (international, based in London, at least for the moment) with initial financing out of ad revenues from a website (thereby accomplishing as an autistic SSI recipient what no government, corporate philanthropist, autism society, or anything else has ever found themselves capable of or interested in...).

That means our tiny little project gets to field all sorts of crises... the HFA woman in Montreal whose mother (her only source of care) just died and who has nothing in the house left to eat except coffee grounds, the steady stream of abandoned aspie teens on the streets (we do a land office business trying to rescue at a distance aspie and HFA teens who've been thrown out by their parents, often after years of physical, psychological, and and sexual abuse-- I have at this point precisely no patience with the line of crap that goes "parents have a right to decide what's best for their child". Nobody achieves sainthood by having an autistic kid, and plenty of parents have anything but the best interests of their kids at heart), the jobless adults that end up on the streets, etc.

It means our little project gets to do things like dial halfway around the world to an autism society in a small city in Australia to see if we could get an advocate-- mind you, not money, not housing, not treatment, just one scrawny little advocate to help her fill out some forms-- for a badly abused and abandoned teen, and getting back a reply, after a long delay, that they couldn't provide an advocate (they're in the business of serving parents, not autistics, after all) but if our homeless and hungry teen who can't even use a bus could just travel 1000 miles to the nearest big city, they knew of a psychiatrist who might be able to see her, at $100/appointment.

As an IRC channel manager I get to see other things, too. I get to see the carnage wrought by years of "help"-- not just in people my age, who were supposedly misdiagnosed and mistreated, but even in young teens. Ever want to clear out a room full of autistics? Start discussing restraints. But don't do it unless you enjoy watching a lot of people have PTSD flashbacks. If you think this was all done for our own good, think again. I still have scars on my body, 30 years on, from having been beaten by hospital staff while restrained and drugged to the point where I was unable to sit up for three days. A friend of mine-- a 19 year old, so this was not back in the Bad Old Days-- tells stories of being restrained face-down, and the staff watching and laughing as she began to suffocate. And if you go peruse the Oasis web board online right now, you can read about a mother upset because her 16 year old aspie son was locked 4 days in a hospital "quiet room" for refusing medication. No, she wasn't upset at the hospital, staff or doctors-- she was upset at her son!

Maybe from your naive vantage point you can imagine those "quiet rooms" are quiet, or at least comfortable, or at least safe. They are none of the above. The number of people who die in them is frightening.

I need to interrupt my rant here with an illustration. I started to type that line about "the number of people who die" thinking "statistics". About halfway though I suddenly remembered something I hadn't remembered for years-- that someone did die in restraints on one of the occasions I was locked up, about a week after I had been in that same quiet room.

Maybe you don't know (because the "experts" don't find it interesting enough to document their own damage) that the apparent rate of PTSD approaches 100% among autistics, and the number of autistics who've developed multiple personalities is noteworthy. If the doctors didn't wound us badly enough, school did-- I know autistics in their thirties who have recurring nightmares about school bullying. Of course when we tried as best we could to defend ourselves, we were "aggressive"; yet somehow causing lifelong emotional scars was not "aggressive", or at least not as inconvenient to the schools.

Maybe you also don't know that occasionally some of the online autistics brave the flashbacks to go to the parent-oriented message boards to try to warn some of these parents about the damage that is happening. My 19 year old friend did just that on the Oasis message board the other week. She told a few of her stories, to try to save some of the kids from what she had been through. The response she got? One parent told her "That's a parent's worst nightmare", then went on to completely dismiss everything my friend said.

Do you see the problem here? That's a parent's worst nightmare?!? Who exactly did she think nearly died on more than one occasion? Who do you think lives with the aftermath every day of her life??? I can tell you, it isn't my friend's mother that had those nightmares, and still has nightmares.

A few other parents criticized what she had to say, and a few questioned her motives. Then they rolled right on, leaving my friend crippled by flashbacks for the next day and a half. You know, it is not a fun thing to spend a couple of days giving comfort on the phone long distance with someone who thinks she's suffocating tied to a table somewhere, when you yourself are fighting off cold sweats and panic. It's even less fun when you realize that in a few years you might be on the same phone holding the same conversation, this time with the teen damaged by the parents and professionals my friend had tried to warn that day.

And you know what? I hate the autism establishment. I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood. I hate anything and everything that pays lip service to autism services but with with all its resources couldn't do what I could do with next to nothing. I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences. I hate "child centered" organizations that leave adult children to eat coffee grounds when there are no more parents to serve. I hate a system that mourns for the purgatory of the parent but doesn't even give a damn about the hell of the autistic. I hate all of this, and so very much more.

I know that not every parent is complicit in this --in fact my ally and partner in my projects is a mother of an 8 year old autistic boy in California-- and I know not every professional carelessly or callously destroys lives, and I hear of the occasional autism organization that tries. But I have no illusion that the good guys are in the majority. Or that the bad guys aren't pretending to wear the white hats.

I also have no illusion that the parent-professional axis will, as constituted, ever do a damned thing for adult autistics, or for that matter honestly put the interests of child autistics before their own personal interests, given that they don't seem to think we have any part to play in what they decide to do to us. Services go to money, money goes to power, and power right now goes to professionals (insurance payments and research funds) and parents (money to help "autistic children"). There's no more room in that for us.

In a few days I'm going to be incorporating the fund and the informal structures around it, and we're going to be a shiny proper international organization dedicated to providing practical help to autistic adults. It would be nice if all it took was raising money and playing Santa Claus. I like to play Santa Claus.

But I know perfectly well that that won't do. It's going to take a revolution. It's going to take overthrowing that axis of power that leaves us voiceless and serviceless and invisible. It's going to take turning things round so that instead of parents and professionals concocting schemes and then looking around for a Token Autistic to perform a benediction over it, nothing happens without our meaningful input. Services go to money and money goes to power and I want power to go to autistics.

So the state conference might have been preferred a Vidkun Quisling, but in the last few weeks I've metamorphosized into Che Guevera. This doesn't appear to be a passing phase. It's merely gone from a teetering-on-the-uncontrollable rage to that ice cold determination that I'm glad is not happening outside of me because I wouldn't want to be in the way of it.

So now I get to try to be a Token Autistic. I understand that another dimension of the Token Autistic phenomenon is that it is an attempt, however weak, to add autistic input. And I'm far too focused right now to have any use for randomly aimed rage. I'm quite sure I'm not going to say anything regrettable. But I'm equally sure I've got a message here, and woe be it to anyone who tries to marginalize adults.

Of course I could also be in weird scattered speech mode, say a few incomprehensible things not at all like what I'd intend to and make me wonder why I bother with vocal cords at all when I can actually express myself in writing but just flail at things in speech... oh well.

END RANT

home | project | institute | library | links | discussion