4:47am January 30, 2015

I miss you, Chris.

I didn’t know Chris Slater well, although we spent over a year together on the same autie-positive chatroom. But I remember certain things about him. And I remember when he died.

This was his webpage from around when I first met him.

He was an ABA success story. This means that when I knew him, in his late teens and early twenties, he didn’t know who he was. He believed himself to have overcome autism. But all he’d done was stuff his head full of nonautistic behavior, to the point where he had no room left to think his own thoughts, make his own decisions, or run his own life. Sometimes when you talked to him it felt like someone else was speaking through him. But since he did not use assisted typing, nobody cared how much influence others had on his communication. Which was, much of the time, far worse and more pervasive influence than I’ve seen with many FC users.

Anyway, he had a tendency to be… over-dramatic, at times. So at one point he and his girlfriend called together all the regulars in the chatroom, Chris had something he wanted to say. He made a big show of describing how he was rocking and flapping now, instead of suppressing those impulses as he’d been taught. It took a lot more than that to overcome his ABA training, but it was a start, and he was well on his way to becoming his own person, not a puppet of his trainers.

And then he died. In his early twenties. Right as he was getting a foothold to understanding who he was. It would’ve been even worse if he’d died still a complete robotic ABA puppet. But it always seemed unfair to me that he died just as he wsa learning to come to terms with everything that had been done to him, coming to terms with what a “The-World success story” meant and how to get back to acting as his real self – one challenge you face at that point is to become who you are in the moment, rather than a parody of who you imagine you would’ve been. And when he died, he was walking that line, sorting out the difference, learning who he was.

I don’t remember exactly what happened. I think there was a head injury. His brain swelled up a lot and he went into a coma. His parents were told that if he didn’t recover in a few days, he’d never recover. (Where “recover” often means “become nondisabled”.) His parents took him off life support.

An autistic woman who claimed to be able to talk to dead people’s spirits (and I don’t hold that out as an impossibility in general, although for her, I was skeptical) said he was just as sad and bewildered as the rest of us were.

I was mad that he’d been given up on so soon. I happened to know that there were people who’d survived much worse brain conditions of that sort, for much longer, and who eventually came out of the coma and regained some abilities. Sure, they usually had some new physical and cognitive disabilities, but they were alive, and generally glad to be alive. I also know (from reading stuff by people who work in them) that some ICUs develop a toxic culture where the doctors and nurses present worst-case scenarios to the families, in as lurid a manner as possible, in order to persuade the families to pull the plug so that their patient doesn’t end up severely disabled.

At any rate, I miss him, and it seems cruel that he died before living the life he wanted, as who he was. He’d literally spent most of his life living as other people’s dreams for him, not as himself. And that was just plain tragic.

You never know how long your child will have on this earth. If you love them, then for the love of everything holy, don’t try to train them to be a robotic extension of your dreams. You might lose your child before you have the joy and wonder of finding out who they really were under all that “act normal” training. He’s not the first the-world success story I’ve met, nor the most recennt, who struggled with major identity issues as a result. Some people “wake up” in their thirties, forties, fifties, even seventies and eighties and realize who they are for the first time consciously. Of course for the oldest people (who, if they had a diagnosis, would either probably be diagnosed as psychotic or intellectually disabled or both), there was no ABA officially, but behaviorism existed and people were trained with or without it, to be something they weren’t. Not everyone lives long enough to reach that point. Chris was lucky he began figuring out who he was so soon – but he didn’t live long enough to finish the process (as much as such a thing can ever be finished), and it pisses me off that people were gambling with his life like that. By which I mean, putting him in the position of not knowing who he was.