It’s what they train us into, not just how they train us.

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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.

Tags: autism dogooders institutions internalmechanics overload solitude medical power treatment training behaviormod

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

5 responses »

  1. Thanks. To me, quiet and solitude is as valuable as gold. People are surprised at how little my ASD child and I interact when we are at home together for hours at a time. We both like it when we can each be totally alone at home, though.

    I’m sorry that ignorant people robbed you of your needed solitude.

  2. Your posts terrify me; the idea of being treated like that scares me. I’m ‘NT’ but a happy introvert – the idea of not being allowed time alone to wind down, to think is terrible.

    I hope people are learning. I was at an autism conference recently where they had a ‘quiet room’ – not space alone, but probably a good start.

  3. We have a room in hour house dedicated to Edith Rose. A place where she can go and be alone. It’s not completely finished, but the plan is to have bubble lamps, music that she likes, and maybe even soothing scents. We call the room her “Happy Room”, a place that she can wander in and out of whenever she wants.

  4. I know I’m replying to this a year late (I’m very slowly reading through the archives on this site), but wanted to chime in as another non-autistic who happens to be introverted. Even though I love snuggling with my sweetie and occasionally spending time with friends, I also tend to need a lot of “down time” on my own. And I think it would be really hard on me if I couldn’t have much of that. I was at summer camp once for a week where our schedule was very rigidly scheduled with group activities (or group meals) literally every waking hour, except for a single hour of “flat on our back” time that was supposed to be used for resting in our bunk beds. Even reading or writing in journals wasn’t allowed then. I really hated it.

  5. I think a huge problem here is that psychologists and psychiatrists and especially techs and nurses and managers really have no idea what helps people when it comes to inpatient units. This is probably especially true for long-term care, where the person isn’t just there for a month to get stabilized but has to make some kind of a life there. I bet if more of us would start listening to people who have a good set of instincts about what’s best for them, we wouldn’t harm people so much. After all, I’ve assumed too that my schizophrenic clients are benefitting from me asking them to stay around other clients whenever possible. But I have no data for this (though it may exist.) It’s just based on my extroverted NT experience of life, which tells me that that for ME when I’m feeling awful it helps to be around others. It doesn’t really make sense for me to project that onto other people, especially other people who may have a different brain structure than I have in many ways.

    Thanks for this post.

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