Barb Moran writes, “They never used words like reward and punishment at Menninger’s, but who were they kidding? If I wasn’t allowed to go somewhere because of my behaviour, what was it? In 1967 I had a funny thought of what it would be like if you put a comma between first and last names of people like you do places, as in “Topeka, Kansas.” I laughed about it. I even told the worker why I was laughing. She didn’t let me go to the carnival they were having at my school that day because I laughed. I hadn’t done anything wrong except laugh at something that someone else didn’t think was funny. And now they say that laughter is good for the immune system!” (From Sharing Our Wisdom, “Life in the ‘Best’ Hospital'”, Barbara Moran)
Institutions, both traditional and non-traditional, launched a similar attack on me. In my case, one of their primary targets was my tendency to spend time alone. “Isolating” was nearly a criminal offense and there were several programs designed, by reward, punishment, or both, to keep me from doing it, or to spend more time around people (effectively the same thing).
They must have been successful.
Tonight, I am overloaded. Very overloaded. The kind of thing where I really don’t belong around anyone else, I belong alone as much as possible until my brain stops doing this to me. I would not be comfortable around another person, and I would not, despite having topics I need to discuss with one particular person, be able to hold a good discussion on those topics.
I used to know this. This used to be instinct. My body used to just naturally go to my room (when I had one), or avoid being around or noticing people as much as possible (when I didn’t or wasn’t allowed in my room).
Yes, I used to walk into my room and lie down. And be confronted with staff barking at me about “isolating” and “withdrawal” and other things that were apparently criminal. Sometimes I was picked up bodily and placed in the dayroom, or living room, or whatever they called it in any given place. Even when I was sick or overdrugged, blinking and noting that half a day had gone by and there was drool on my shirt. It was important to them, very important, that my body be among other people at all possible times.
This is one of the problems with what is done to autistic people: It often makes us less able to function. Being able to spend time alone, and to recognize when we need to spend time alone, is vital to many of us. Yet many of us are put on programs just like mine, that train us against our correct instincts. These days, when I am so overloaded that I know I need to stay away from people — days like today — I have to fight an urge to at least be in a room with other people and a fear that I will get into trouble or be a bad person if I don’t. The urge is not explicit, it’s just there, an aspect of training that even I, who don’t pass for NT at all, seem to retain. It takes conscious and deliberate recognition of the urge to fight it.
So I am alone. And I will remain alone as long as I can, and as long as it takes to deal with this. This is better than it was before, and easier to do without fear. But the urge is still there and that is disgusting to me. Not that I am disgusted with myself, but I am disgusted with a set of rules that says behaving, even in a small way, like a non-autistic person, is more important than being a healthy autistic person.
Healthy? When I lived with another person earlier this year, who was almost my dream roommate even though neither of us wanted to live together (it was forced by circumstance), migraines came in full force. I could barely and rarely get out of bed. My pain levels skyrocketed. By afternoon I was often too limp and exhausted to do anything. This is what happens when you force someone whose body needs a huge amount of solitude to live with someone, even someone they’re close to.
I have no innate desire to wear myself out to that point. But if I followed these urges set there by the all-knowing professionals who knew so well that what I “needed” was to be around people for all my waking hours, that’s exactly what would happen. It doesn’t matter if the training to do this was awful or fun (and they did sometimes make it fun and “reward-based,” it changed things not one bit), it matters what they were training me to do, what they did with the power they had over my life.
I am glad that today I am able to say “I need to be alone. I will not deal with people unless I have to.” It’s taken me years to regain even part of this instinct that used to be my own, and to fight the new “instinct” that was implanted by professionals. Hopefully eventually it will be as obvious to me on a regular basis as it used to be, when I need time alone. And all the other things that people tried to train out of me.