In Flowers for Algernon, Charly is not very aware of the world around, and an experimental drug makes him more aware, and smarter. He gets more attractive to others and more successful; life flows more for him. I’ve also been getting more aware gradually, but with different results. I see other auties at a different stage of life than me, and I think “I used to be like that” (in relation to them not being aware of social facts or conventions). But my awareness hasn’t made me any more desirable or fun. I just cower under the weight of knowing the kind of appropriateness-crap that matters to people, when I didn’t know before. The more I solve old stress issues, I become aware of more things to stress about, so the cycle never ends and I never settle into a nice pattern of ignorance. I feel more disabled, the more I find out. My friend said she would twirl and dance in the aisles at the store, until one day she realized people were watching and judging; then she stopped. Awareness is crushing that way. I used to work in the garden and paint in any clothes I was wearing, so I always wore ragged clothes. Now I wear “nicer” clothes and now I try not to get dirty; I’m so careful that I’m no fun. This business of acting like an adult is a lot like going back into the closet and hiding.
Awareness of convention is not necessarily an improvement, and may take away from awareness of self.
So I desperately want to come out of the closet. I feel like I have so much potential and I can’t wait to find out who I am. I have only the slightest inkling of what I could be. It feels possible that I’d be nurturing, maybe even fun or generous. I wonder if I’d be desirable to be around, and wonder if no one including me has ever known who I am, and maybe that’s why bonds between me and the other humans are so fleeting and tenuous.
On the day I discovered autism, I went out to the patio and walking, almost floating in spirals of thought I said to myself: I have autism… no, I am autism!… no, I am someone! The shame had been so deep that I didn’t consider myself to be anything much prior to then, and the experience of finding out there were other people like me gave me permission to be something more definite.
In autism circles there is talk of “support” all the time. Sometimes it means having an assistant for a certain task and other other times it means having a more general kind of encouragement that one is OK. I know in theory that a supportive environment heals and strengthens a person gradually. For example, one of my high schools was more supportive than the other. In one I went down hill and became a scared depressed empty person, and in the other I regained part of the loss. But what would support look like now? I think with support I’d be able to come out of the closet, and I wouldn’t sacrifice awareness of myself.
I can more easily say what anti-support looks like: when I get othered. For example if I do something in the autism “community”, and I’m the token disabled person, there’s a subtle assumption that I’m automatically wrong. That experience eats away at me and makes me weak.
I have a memory problem that is related to awareness and support. I can often remember to pay attention to other people, or to drink water, or to expose myself to new ideas, or to set my boundaries and remember that I can have my own preferences. But I cannot remember all of those things at the same time. If I start to keep one aspect of life close by, the others slide away. If I remember to feel, I forget to give, and so on; thus I’m always at the threshold of existence, never finding my way out of the closet. The memory issue gets worse with greater awareness of convention and with trying to be something. As I learn and expand in social awareness, I seem to forget more easily who people are. For example there are four sisters who I have known since I was little, but when I saw them last summer, there was only a vague recognition, and the stress of not being able to tell them apart from each other was very stressful. Earlier in life when I wasn’t as aware, I would have not known or cared about that problem, but also I used to be able to tell them apart without as much effort.
I was recently reminded that I haven’t had the giggles in years and had forgotten all about laughing. So I added laughing to my list – the list I’ve been accumulating of things to remember. When I add things to the list, the mental sequence is like this: “Oh right, exploring! I used to explore, but I forgot all about it. I better add that to the list.” The things on that list are general things like exploring, feeling, meditating, following inspiration, making my environment pretty, and taking control.
As Yoda says, “Do or do not. There is no try.” The forgetting comes from trying – trying to be something (awareness) and maybe this leads to my consciousness not even inhabiting my psychic circle – I’m somewhere else.
Sometimes I see someone and I think “she’s one of me”. I’ve come to see that the concept of “other people” really doesn’t exist – if there is to be no othering, there are no “others”. People say someone is “one of my people” or “in my tribe” – but I suppose I don’t say that because I don’t mean to say there is some division between my people and other people. So I say “one of me” to mean that with that person, I can feel the oneness and the accepting of each other without reservation.
I find the kind of compassion I know about mentally is hard to manifest outside the rare people who I can feel are one of me. My dream of being supported is having a continuous link to enough allies so that I’m not going through life in protection mode, and I’d be outwardly compassionate.
This post is a reprint from Ian Ford's blog, and can be found here: