1:37am March 9, 2013

Does anyone remember?

Does anybody remember?

Every single day, I woke up screaming. I couldn’t find the words to speak. Then I had to remember I couldn’t speak anymore. Then I had to remember where to find the words. In my fingers, in my hands, in the endless word-boards full of little stickers I bought or made. This was in my early twenties? I screamed and screamed because they were gone and every word that did come out was meaningless. And I couldn’t find them. And I couldn’t find them. And I needed them for answering questions like “What do you want for breakfast?”

And when I was alone, at night, I cried for hours. And I became unable to move. And, immobilized, I wrote in my head. I wrote everyday things. I wrote long things. I wrote short things. And I had to trust that sometime when my body could move, those words would come out at the right time. And sometimes they did. Sometimes they didn’t. And when they didn’t, I screamed. Sometimes hours of screaming before staff (= people with more power than I’ll ever have) and I finally figured out what I meant.

And other times I ran in circles till I dropped out of breath and nothing could get done because I couldn’t stop moving.

Does anybody remember?

It happened more than once, I know. I’d get confused. It wasn’t that I wanted anyone any harm. Not even myself. But somehow the door handle on a car is a powerful motive to pull on it. And I pulled the door open. With the car running. On highways. In my teens and twenties. And then people had to get me aware of the right types of things, so I wouldn’t try to go out exploring. I wasn’t trying to die I swear it. It’s just the tactile sense of pulling it open, then the movement pattern, the whole movement pattern says you step out.

Does anyone remember?

I slammed my head on things. Hard enough to bleed. Hard enough to make me confused. Hard enough to make me wobbly, hard enough to make me forget what was going on. Or whap it with my hand, started as a kid but got worse through teens into twenties, finally stopped. But for so long people would grab me and try and stop me. Or put a pillow between me and the wall. Etc.

My first mental institution I was banging my head on the floor. Boy asks, “Are you a head banger?” I answer safely, “I don’t know.” Boy says “Check out this chick she bangs her head on the floor and doesn’t even know she’s a head banger.” Memory ends there.

There was more than one kid in and out of the system. Had no clue why I banged my head. But they would put themselves between my head and the wall. Their hands. To cushion my head. Can’t thank some, not safe to contact others to thank, but glad they did. If I was head banging I couldn’t communicate much right then.

Does anyone remember?

When my brain went back to how it meant to be all along? I couldn’t be the success story. I couldn’t be the child prodigy. No matter who wanted it and how much. Least of all me. I couldn’t. My brain wouldn’t permit it. So it changed me back to who I’d always been. How, underneath everything, I’d always experienced the world.

It didn’t change me instantly. A little here a little there. Fast now slow now. But in the end It made me into someone with a fairly regular set of abilities, even if trying to function in their world made it look like they were all unstable.

But in the middle of all the changes. Speech. Movement. Language comprehension. Comprehension of surroundings. Each dropped out a lot. And a little more. And a lot more. Subtle at any point in time. Huge if you took the whole point in time as a leap. Eventually these things were either not there, or very hard. Almost as hard as they’d been before I’d tried to hide them all with child prodigy skills, flashing lights that blinded people to the extremely confused kid underneath.

I know too many other people been through this to tolerate one more person calling it rare, atypical, a lie. I’ve talked to dozens of adults who came of age through this bizarre process where first they became child prodigy success stories, then the simplest little difficulty would lay bare the confused kid underneath, who didn’t even know many of the things everyone else is born knowing, but who managed, usually by accident, to fool people into thinking we were aware beyond our age instead of the opposite.

Do you want the truth? We were never your child prodigies. We were never your gifted students. We were never your hopeless cases either. And the reason isn’t us. The reason isn’t us. The reason was never us. If you don’t understand this you understand nothing: Nobody is a gifted prodigy, nobody is a hopeless case, these words are meaningless labels. Hurtful labels that draw blood because each one is one side of a mechanism that destroys lives but can never understand life or love or anything important.

I am me. I am no more than me. People who call me high or low functioning want to use me for one thing or another. They are both wrong. They are both right. They are both wrong because I have always had, have right now, and will always have traits attributed to people labeled high and low functioning. They are both wrong because high and low functioning are words that mean everything about the person who uses them, nothing about the person they are used upon. And they too are terms that draw blood and are used to manipulate people and use power incorrectly.

I was the child who at the peak of my academic talents — 12 years old — did a science fair project on fractal geometry that neither students nor teachers understood. I still peed on rugs at that age. I was the young adult who, at the peak of adult ability to live on my own — 19 years old — peed in my front yard and on the floor, couldn’t keep myself fed or watered, slept randomly, froze a lot, spent all day learning to unfreeze myself, and lived in chaos that would’ve had me in a high level group home or ICF/MR had the state seen how bad it was before I got a few services to help clean it up. I was so capable of writing things on the Internet that nobody believed me on the few occasions I could figure out the words to write of new things — how things were right then. New words sometimes took me years to write

Does anyone remember?

I have never been nice. I have never been tidy. My life has never been easy to describe. I could never describe my current abilities. But I have been called low functioning. And I have, more rarely, been called high functioning. And that does not make me either one of those damn things. And when I say I can’t talk it doesn’t mean I say I’m LF A and when I say I did good at one type of math it ersdoesn’t mean I say I’m HFA. When I say I have one skill it doesn’t mean I will have it tomorrow or have a skill right next to it today. These are the god damn facts of my life and they will remain facts no matter how many people who hate me for umpteen reasons try to dissect them for their own satisfaction to make me sound like someone I’m not.

People forget the real and they only remember the damn pictures in their head. I’m no picture in your head. I’m as real as it gets. I’m so real I don’t need no “realistic”. This is who I am. Take it or leave it. I am everyone’s nightmare picture of autism and I am nothing like it
and I am both stitched together until you can’t tell them apart. And I am love for every autistic adult or child lost in the translation who has suffered the life of being made a two dimensional caricature for the use of others because I’ve been there too. And love to those who haven’t yet or haven’t at all. And I will make myself into love that will somehow help us despite everything. Love is the strongest thing around, and I will let myself be absorbed into it until you can’t see all these meaningless HF LF categories anymore and just see who we are in all our variance because that is beautiful.

And I may not be able to write everything I envisioned but I wrote something and I wrote it out of love and maybe love will come from it. I wrote it out of love for the hundreds of autistic people just like me, or just like lots of people I know, who will be used for their talent, discarded for their impairments, maybe both, called LFA, and then maybe even called fake if someone thinks they have the slightest reason to say that they ever had a scrap of a talent at anything visible. And I think only love will ever stop this. Not what most people call love. Something deeper than reason, deeper than emotion, realer than any other possible thing, and I call on that kind of love to solve that mess because I can’t think anything else strong enough to do it. And if not solved, innocent people will suffer as I have, as the dozens who’ve emailed me saying “I’m just like you and I fear to be in public now” already have, as the people similar to me therefore mistaken for me have. So I ask that kind of love to help us, to do what it does, to use me however it wants, because only then will all this work.

And so much more beyond that. The whole idea behind HF and LF is silently killing now, people called both, and I lack words to explain who and how, and how I know. I just can’t put words to it. But I love them. And I try to act on that love when I can. But if everyone acted on it, things would be different, people wouldn’t be dying for being too high functioning for services or too low functioning to benefit from medical care or both in the same person (it happens). I love them. I will do everything I can. Others can do more than I can. I hope they will.

Does anyone remember?

I have been a lot of things people never imagine when they saw me. This is not my fault. I can’t help what others can’t imagine. But I can try to make the world a better place for those of us nobody wants to imagine exist. We are everywhere. Everywhere.

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