Friday, April 29, 2011

They sang "Love is the Answer" and I think they're probably right

I finally just started (and finished) the book "Look Me In The Eye" and, as she always is, my wife was correct in saying the book would have a big impact on me - both because of Owen and my own quirks and experiences. And because it's a good book.

I think in some way I resisted reading the book because of the whole "and then when I found out as an adult I have Aspergers, so many things suddenly made sense" aspect of the story.
I think the trepidation came from how often, in dealing with Owen's diagnosis, I find myself thinking it all sounds alarmingly like my experiences being a weird kid - that and how annoyingly often I feel like I hear that same revelation from people that otherwise identify themselves as normal or typical.

I feel like it has almost become a new cliche to suddenly self-diagnose with "a little Aspergers" - I don't know if people just desperately like the idea of having something to make sense of their quirks or if it's a growing acceptance of the idea that nobody is entirely without the traits that Aspbergians find so heightened. I think it's comforting to be able to put a label on all the awkward moments we all must experience and move on. To be able to tell ourselves that we are essentially normal despite the pains of finding our place in a normal world.

I like the explanation that everyone exists on a spectrum - that there isn't a separate spectrum for those with a ASD diagnosis and one for everyone else - which is a point that often gets glossed over. We seem to be in a rush to say that there are many kinds of weird and only one kind of normal. Better to remind everyone that there really isn't a stable norm since it's evolving and changing all the time and everyone experiences and contributes to it differently - the habits and tools you use to shape that experience for yourself and the people around you determines your place on the big spectrum, not which spectrum you are on.
We are all on THE spectrum. The entire spectrum of autism to Aspergers has a place on THE spectrum of people and there is even considerable overlap between the two in my mind - like the MC Esher drawings of the fish becoming birds and vice versa. There is no place where the fish end and the birds begin, they are mixed together to form a gradient.

All that aside, I actually did have some startled moments reading the book - especially the parts about his younger years and later workplace interactions - that made me think I could probably find myself on the part of the spectrum we consider to be a diagnosable rarity. Or maybe we just have similar personalities in some areas. I don't know.
His description of the social learning process was striking and familiar to me. Not consciously noting the difference between small people and animals, but the observation of what behaviors yield negative reactions and the determination to deduce "the answer" that will unlock the secrets everyone else seems to know.

Many of his brief descriptions of his emotional reactions to those situations struck me - I found some shockingly moving because they were almost precisely the same as mine and reminded me of the kinds of raw, lonely pain I still remember. The kind that you never forget. The kind I hope Owen never feels. But I know he sometimes will.

Many times I have been made acutely aware that I didn't know how to carry on (or end) a proper conversation, spoke way too fast about things nobody really cared about until someone shut me up, sometimes found myself shouting or speaking at a ludicrous volume without realizing it - and looking back, I get that familiar flash of "I can't fucking believe I was like that" embarrassment and anxiety at the most random of times.

Having those moments of learning more about social norms that suddenly, completely redefines past interactions and makes me realize that I was acting way out of the norm, but at the same time that IS how people have to learn social norms no matter what - they aren't something universal to human beings everywhere that we should instinctively know.
It's when someone proves impervious to learning that it becomes a problem - but I can't think of any other part of human development in which we get angry, upset or uncomfortable by the idea that someone doesn't know something.
In every other scenario you would simply explain, or at least accept the disconnect of information without getting emotional about it - but socialization is something we are expected to come in already knowing and the disconnect is often met with ridicule and rejection instead of instruction. We accept those things as the basic operating system and people that make us stop, think about it and explain it upset and frustrate us. Partly, I think, because they remind us of the times we were on the other side of the disconnect.

I think that is what makes it so painful sometimes for children: one moment they are doing what seems perfectly normal - for the sake of metaphor lets go with playing the game. A game whose rules you learn as you play and it seems like everyone else is already familiar with, and everyone is expected to play - and suddenly they are are off the game board with no idea why.
No idea if they were supposed to know something, if they are the only one that somehow missed what everyone else seems to know - even though there is never a clear explanation of the rules it seems the variant they found is not an acceptable permutation - and wondering if this means there is something wrong with them. All while trying to get back on the board to rejoin the game.
All of that is a scary and lonely enough process and carries enough of an emotional penalty without the reactions of the other players - which will almost always be negative and sometimes overtly cruel, even while they quietly worry that next time it will be them that accidentally steps out of bounds because they are also learning the rules along the way and may have found themselves off the board before and learned that this is the reaction they are supposed to have.

This too seems to be part of the game.

I love this book for the insight it gives and for putting out a marker along the game board that says something to the effect of "you are not the first or only one to feel lost or scared" - which is powerful by itself and takes a certain Aspergerian personality to achieve since everyone else is too busy trying to learn the rules.

As for Owen, it's tempting to try and shield him from the whole thing but that isn't possible or helpful. Better to try and teach him and everyone else what to expect, let him know what he will be experiencing and that he isn't the only one - so when inevitably finds himself off the board there can be a nice sign there waiting for him:

Welcome! You are out of bounds but not in the wrong.
All the people pointing, making faces and saying mean things (yes, ALL of them) have been here before - and people were not nice to them when they were. If you would like to be like them, lose one turn and rejoin the game.
If you would like to make the game more fun for everyone to play, be nice to the people you see out here. Move ahead 2 spaces and go have fun.

PS - you will probably be out here again.

- I trust he will make the right choice, he's on the more logical part of the spectrum and we need people like him to help us make the game better.

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