Sunday, January 2, 2011

What does it take for autistic women and girls to "pass"?

There's an interesting comment thread-within-a-thread going on with the NPR/Allen Frances piece I posted a few days ago. The subthread is focused on how autistic women perceive the world and how the world perceives them. I've decided to make it a post-post because what the women who are posting are saying is valuable to anyone who is an autistic woman or girl or to their families and friends.

I myself can relate to much of what they say. A few weeks ago, I confided to a group of autism parents from our church that even sitting there, talking to them, took a great deal of effort on my part as I worked to focus on what not to say, when to keep my mouth shut, when not to ask impertinent questions or spout off with a blunt truth, when to express sympathy (that I really feel) while trying not to be awkward about it, when to make eye contact, when not to make eye contact, when to smile or use my facial muscles for some other emotional expression, when to notice and how to interpret their own expressions, especially when they don't seem to match their words, when to avoid getting distracted by some minuscule feature of their face or clothing so that I can continue to pay attention to their words. Even my brief mention of how hard I was working (I didn't go into the above detail) felt like a misstep to me, and I only said it as an example of how hard our children with autism might be working in a similar situation.

That's not to say that I think I have autism. I'm clearly of the square peg variety in a world full of round holes and was that way as a child. I learned a long time ago to start keeping my catalogue of social algorithms, much like this one, adding to and modifying them based on my observations of "socially able" people. For me, social interaction is not and never has been a natural process, but with my accumulated algorithms, it's become an easier one. That said, after an intense interaction like that group meeting with autism parents at my church, I need some serious downtime to regroup. It's just exhausting.

But women are complicated, are we not? I can walk into a room full of students and teach, no problem. Sure, I'm worn out afterward, but who isn't? I can walk into a party and stand there, alone, no problem, or try to talk to people, no problem. I don't particularly care which one I'm doing. With the latter, I'm working a lot harder, latching onto conversational bits that would make the exchange more interesting, trying not to overtalk or overstare. But I can do it. I'm not shy and never have been. I just like to be alone, and I always have. And even though I can engage in such situations, I'm never entirely sure that I'm "doing it right." Indeed, based on reactions even from friends, perhaps not.

Socializing is, for me, a form of exercise, like taking a run. I have always done it and will continue to do so because it wears out my socializing muscles in the way a 10-mile run might work out one's legs. But the recovery is lengthy, and the mileage I can do is limited. I'm not one of these people who can travel with associates and hang out together 24-7. I have to have my time alone, or the cranky, edgy side of me starts to emerge, like a rumbling volcano. I wonder how many women on the spectrum have similar experiences. I also wonder how many men differ, possibly not being as able as women--or so it has been said--at covering their differences.

I've often noted here and in real life that my children come by their abilities and talents and deficits and quirks honestly. They're fruit of a couple of introverted, loner trees. That's not to say that either of us, the parents, are autistic, but at least we have an understanding in many ways of where our children come from. And since my spouse is male and I'm female, even our understanding and our experiences, while inwardly similar, have manifested outwardly in very, very different ways. Based on what I've been reading, the same applies for autistic people, but because of the presumed male bias in autism, the males have been getting the bulk of the attention and analysis.

Females on the spectrum. Let's hear more about them. Let's read more about them. Let's hear from them, too.