Daily Archives: May 17, 2006

Everything we have missed?


This is because I have seen several references lately (in lots of different places) to everything that autistic people must necessarily miss out on. The following post was made last year, and I haven’t managed to re-post it to the archives of this blog yet, so I’ve edited it a bit and posted it here:

This is difficult to write about, there are few reference points in language, and I feel pretty clumsy trying to get words around it. Please keep that in mind as you read this.

I’ve just read over on Kevin Leitch’s blog (courtesy of a commenter, not Kev) that essentially autistic people who decide we like ourselves as we are, just don’t know what we’re missing. That if we realized what experiences we were unable to have, we would jump at the chance to be non-autistic.

There have been a number of ways of critiquing this kind of thing from within disability theory, and I don’t feel up to elaborating on those right now. I agree with them for the most part, but it’s been written a lot already and it isn’t what I’m about to write about.

I wonder if people without my particular experiences (which many but not all autistic people share [link takes you to a poster by an autistic guy who had trouble conceiving of anything outside of words, which is kind of my opposite], and many but not all non-autistic people don’t share) understand what they’re missing. I am not saying they should be like me. They shouldn’t, the world needs all kinds of people and my kind is only one of those kinds. But, despite the fact that xe was writing about a physical intersex condition and not autism, a quote from Jim Sinclair is appropriate here: “It is when someone who has not even bothered to look at my world dismisses it as a barren rock. It is being called inferior to ‘someone who is human.’ It is the denigration of my experiences, my feelings, and my self. It is when my unique faculties are thrown back at me as hopeless inadequacies.”

The autism-related words used to describe me are descriptions of absence and barrenness. Absence of perceptual filtering. Absence between thought and action. Absence of certain kinds of thinking. Absence of a lot of things like that.

The trouble is, the words were created by non-autistic people for describing non-autistic experience.

How do I put into words the experience of all the stuff that fills the supposedly barren gaps between the things other people are used to and comfortable with? I don’t know. I don’t know if there are words for that. I once wrote that I was living in a valley, with green grass, rivers, and trees that don’t even grow on the mountains. But that the people living up on their mountains dismissed my valley as a wasteland because they couldn’t see it clearly from their vantage point, obscured partly by clouds and partly by distance. Some of them couldn’t even conceive of its existence, thought the valley was some fairy tale.

But that’s an analogy. Analogies only go so far.

All I can say is that between thought and action, there is lush vegetation that the mountain-dwellers can’t perceive. Between perception and conventional understanding, there is a whole different kind of understanding. There are creeks to splash in, trees to climb, patterns to perceive. I don’t know how much sense this will make to a person without these differences.

Or perhaps the dog analogy used by someone else comes back. I have had a dog who was a retriever, and a dog who was a scent hound. They enjoyed different things. The scent hound never liked retrieving sticks. The retriever never liked sniffing out trails. Was the scent hound missing out on the richness of life because she wasn’t a retriever and could not retrieve sticks? Was the retriever missing out on the richness of life because he wasn’t a scent hound and had no interest in sniffing out trails? Of course not, there’s enough richness everywhere in life for everyone to have enough, and we all have different parts of it. (And I’ve been sent to hell and back for being who I am, so that’s not a platitude and not meant to enforce some kind of “separate but equal” or sentimental “welcome to Holland” crap, I hope it will be understood as intended.)

But… yes. The richness of life. I wonder if the person talking about the richness of life, is capable of looking around and seeing shapes and colors instead of objects, and of mapping the patterns of those shapes and colors. I wonder if he understands that kind of beauty, or only the kind of beauty that comes from a certain other kind of perception, more filtered, perhaps in some ways more efficient, but irretrievably blocking out many things before they hit consciousness.

I wonder if he understands the dance of waiting for “launch windows” to line up to make actions possible, and all the things that happen while waiting on the ground for the next “launch window” to start. I wonder if he understands that with any pain coming from the jerking-around fluctuations also comes a rhythm and beauty. I wonder if any of this makes sense to him.

I don’t know what’s in the future. I may lose some of these experiences, but there would be other experiences to take their place. These experiences may become more extreme, with some of the experiences I have now lost. These two things have happened in the past, I see no reason to assume that either or both will not happen in the future. Either or both would be acceptable to me. Either or both would include a whole different dimension of the richness of life.

I know I’ve talked about a lot of negative experiences in my posts recently. The positive experiences I talk about here are part of living as the person I am, too. Being the sort of person that gets called autistic brings things that other people describe as negative or positive, but they stem from the same thing and that thing has beauty that many people can’t see.

It is not just having things taken away, it is not just compensation, these things are part and parcel of being autistic, although they differ from person to person. I’m not talking about some balancing act where a god of impartiality runs around taking things away and giving other things, that’s ridiculous and in fact ableist. But I am saying that those who are viewed by society as having things taken away from us, and our lives viewed as being essentially barren wastelands, are not shut out of the richness of life by being who we are. And the richness we experience is not some cheap romanticized copy of the richness others experience. The richness of life is there for everyone, and whether one experiences it or not is not dependent on being autistic. How one experiences it, on the other hand, may well be dependent on neurology and life experience and everything else.