2:02pm June 1, 2014

So I have this thing called autistic catatonia.

Catatonia is a complex movement disorder. Most people think of someone sitting unmoving and unresponsive, presumably unaware of everything around them. And that can be part of it, but it’s actually a complicated web of difficulties that rivals autism itself in its sheer complexity. The day I remember, I was having problems with catatonic excitement.

Catatonic excitement is basically where you run around in a frenzy, and you can’t stop running, you can’t stop moving. It’s a danger to your health because people have beenknown to keep running until their body is physically unable to run anymore. This can lead to collapse, hyperthermia, asthma attacks, and worse.

I was running in circles around my apartment, jumping up onto the furniture, bouncing off the walls, and my mouth was making strange whooping noises now and then. Every time I passed my staff person in the kitchen, I would yell. I was trying to get her attention so that she could help me slow down. The best thing for me at moments like that is for someone to guide me to the couch and lay heavy blankets on me so I can’t get up easily.

Instead… it sort of happened how it was supposed to, but mostly it didn’t.

The staff person came up to me, grinning the grin she always had at times when I wasn’t able to communicate in words. It’s the grin an adult uses with a small child.

She stood in front of me and put her hands up in front of her. Knowing that, with my echopraxia, I would mirror her hands. I mirrored her hands.

Then she told me to run towards her. I ran towards her. I was running in place. She giggled. I giggled.

Nothing was funny. I was in what I call Cute Client Mode. I may feel like shit inside, but something about me turns on and performs cuteness for the sake of staff.

She thought she was making an important connection with me.

So I ran in place, towards her hands, and she walked me backwards towards the couch, and got me onto the couch, and covered me in weighted blankets and other heavy stuff, and I stopped running around.

Mission accomplished, right?

I could just see us in a training video, in my mind’s eye, as doing the perfect thing. Her doing the perfect thing. Her being the hero who saved the day, maybe even saved my life (catatonic excitement can be lethal).

But here’s the thing:

She was controlling my movements.

When she pushed, I pushed back, when she pulled I pulled back. So she learned exactly how to push and pull on me, so that I went where she needed me to go. I felt completely empty. She laughed, I laughed. I was trapped somewhere deep inside myself. I had no connection to my body and its responses. No connection to my apparent emotional responses. I was a robot. I was a cute, giggling robot.

And any onlooker would have seen this scene as cute, or beautiful, maybe even amazing for her ‘handling’ of a difficult situation. She did it without resorting to violence or physical restraint. What people couldn’t see was the ropes tying me to her, because the ropes were invisible. And she could pull on those ropes whenever she wanted.

She was particularly good at that. Over the time she was my staff person, there were so many times that she was able to control my actions. Sometimes while touching me, sometimes from across a room. People don’t understand how this is even possible.

With autistic catatonia, you have trouble crossing certain boundary lines. Even lines on the floor, doorways, the invisible line between being in bed and standing up, all of these are boundary lines that take a lot of energy and effort to cross. It is always easier to follow a line than it is to cross a line. The same is true for many autistic people who don’t specifically have autistic catatonia, because it’s all on a continuum, and autism and catatonia are intimately related. If you think of some of the stranger limitations encountered by the people in “Awakenings”, you’ll understand a lot of what autistic people go through on a different scale.

There are people who come with their own boundary lines. These boundary lines are invisible, and they go out from the person and fill the entire room. I have no explanation for this, but I know for a fact that I am not the only autistic person who experiences them this way.

There are people who can walk into a room and render me incapable of communicating. Or if I do communicate around them, my communication looks jagged, angry, and ungraceful. This is because the effort it takes to break through the barrier, is so intense that it almost takes something like frustration or anger to fuel it. So I am either quiet and demure-looking, or else I am typing and angry-looking. They can use either of those to control me and label me.

If someone walks into the room who tips the balance and allows me to communicate what was going on, they can play that game of “See, she was behaving just fine until you came in.” When what really happened, is they were suppressing my communication, and only after someone familiar walked in and opened up the lines of communication could I say anything or even have body language that showed how I really felt.

Many staff are given brownie points for being “good with people with developmental disabilities” when they are actually merely good at controlling us.

I also had a really terrible experience with this one woman. She was disabled, or at least claimed to be, and while I have reason to disbelieve the specifics (she lied about her IQ), I have no reason to doubt that she was disabled in some way. She had a lot of ego tied up in being “good with” people with “severe/profound” developmental disabilities. She claimed that she was “actually really severe/profound” even though her IQ was in the borderline range usually and the very mildly intellectually disabled range at most. She’d claim to have an IQ of 30. Anyway, she tried to surround herself with people with severe communication impairments so that she could be seen as “having a way with them”. (How sinister this was, became apparent in that she also claimed to “have a way with” animals, and needed an animal taken away from her for severe neglect. She loved to say things like “your cat will let me pet her, and she lets NOBODY pet her” and things like that.)

Anyway, so at one point I shut down in front of her, and it was the worst experience ever. She basically took over immediately. She began telling everyone what I was supposedly thinking. Correcting people in the way they interacted with me. The moment I became unable to communicate was the moment that her control over me started, and she was absolutely blissful about it, the same way I saw her blissful around other people who couldn’t speak or type. She always talked about how I was “the real me” when she could control me, and “not really me” other times.

Anyway, the lines of control work just like boundary lines on the floor. The only difference is that they are invisible and emanating from human beings. They control what behavior you can do, and what behavior you can’t do. They don’t have to be touching you, although touching you makes it worse. All they have to do is be in the same room with you.

I don’t trust anyone who can do that.

I see a lot of people like that who work in the disability field. Worse, I see a lot of people like that who work in the field of augmentative communication or even facilitated communication. FC is a scenario where you need people to be exerting as little control as possible over the person doing the communicating. It makes me extremely uneasy to be in the presence of facilitators who can control my communication from across a room, and watch them touching someone who is trying to communicate on their own. They are supposed to be learning not to influence their clients, but so often they are the type who can influence anybody who is vulnerable in certain ways.

And there are people like that.

There are people who can control where, when, and how I get up and move and walk around.

There are people who can control my outward displays of emotion, regardless of what I feel inside.

There are people who can control whether I can communicate, and what subjects I can communicate about.

And to break through their control makes me look rough and uncultured and them look graceful and beautiful. And to go along with their control makes it look like we exist in a beautiful, graceful dance, in which I am well loved and they are the people who make my care possible, and everything is picture perfect.

It’s like being under the Imperius curse. You feel this smoothness inside, this feeling like if you just do what you’re supposed to do, then everything will be fine. Your thoughts are wiped out, your feelings are flattened, and it almost feels good.

And if you do resist, it will look bad for you. And they will swoop in and 'take care of you’ and 'make things better’.

Disabled people are not immune from being this dangerous type of staff. I have seen autistic people walk into a situation and believe that their autism makes them immune to harming their autistic or otherwise disabled clients. Or that it means they have special insight – which sometimes they do, but it’s not always as extensive as they believe.

Donna Williams wrote an entire scene in Somebody Somewhere in which she basically got inside the head of this autistic girl at a swimming pool. She thought she knew what was best for this girl, and she thought she knew what the problem was. In the text of the book, she writes as if she’s aware of everything going on inside the girl’s head.

And she does this thing where she pulls the girl back and forth. The girl pulls away, Donna pulls back. They get into a rhythm. And this makes the girl finally “free to choose” what to do. I know that push-pull rhythm very well, and what it leaves you is free to do what the other person expects that you want to do. That scene left me feeling profoundly uncomfortable, because I’ve been on the wrong end of push-pull tactics before and they do not leave any room for freedom. I believe the goal in this whole thing was to break the girl out of her own world (where she was stimming on the surface colors of the swimming pool water) and stop her war against joining the world by helping her get into the pool and swim (which eventually, she did… she might have actually vomited from fear at one point before getting there, though, or I might be remembering a different book).

Anyway, things like that stick with me.

Memories of being controlled.

Memories of the people who watched and thought they were seeing something beautiful.

Memories of that horrible feeling. Like there was this white fog pressing on me from all sides, making me feel a false happiness, a false contentedness, like nothing could go wrong.

Memories of being pushed and pulled, rhythmically, back and forth, until my own motions were only a mirror of the rhythm.

Memories of being trapped in a way that nondisabled people assume is all about my disability, but that really is all about my caregivers. And they assume the caregivers are helping, when they’re the ones doing the trapping.

At this point in my life, I don’t have a single caregiver who would do this to me. I have not always been as lucky as I am now, able to evaluate, train, hire, and fire my own support staff. Right now I have about five different people who work with me regularly, and every single one of them is excellent at what they do.

But I have a history with some really bad ones.

And I also have a history with some people who were never my support staff to begin with, but who controlled me in that same way.

And it was horrible.

And it’s important for people to know that this can happen.

People can be controlled without anyone saying a word, without anyone slapping someone in restraints, without any obvious signs of control. Because those lines of power are invisible. I don’t know how they work, but they are very real and they affect lots of disabled people, not just me.

Always be on the lookout for this. Never assume that control isn’t there, just because you can’t see it, or just because the people involved appear happy. Appearing happy can be part of the problem. Particularly a very giggly sort of surface-level cheeriness.

And this can even extend to communication. As in, what you can say. What you can’t say. What you do say. What topics are able to be talked about, what topics can never be talked about. This can happen with spoken as well as typed communication, and many autistic people are far more vulnerable to having our spoken communication hijacked in this way than our typing. (Yet everyone is constantly worried about what will happen if someone hijacks our typing.)

And all of these things, all of them, can take place without physical contact ever happening. They can take place just because someone is in the room. They can happen in the course of a conversation. They can occur through subtle body language, and all kinds of other ways of communicating.

The people who are most vulnerable to this have a specific pattern to us, but it’s not one that aligns itself well with the categories most people are used to. It’s not autistic versus nonautistic. It’s not verbal versus nonverbal. It’s specific people with a wide variety of cognitive disabilities, and that’s about as specific as I can get. We might have labels of autism, intellectual disability, dementia, or schizophrenia, but we’re experiencing the same thing here. And it’s a way of controlling people without leaving any trace to show that you’ve been controlling, so it’s both dangerous and popular. And not everyone doing it even knows that they’re doing it, many believe they just have a knack for working with people like us.