Wednesday, January 18, 2012

If You Can't...


I got to open my presents early for Christmas this year, as my mother was going out of town to see family. I told her I hadn’t had a chance to wrap hers yet, so she could open it when she got back Christmas night.

We didn’t get to finish opening presents that night. We had a yelling match about the true nature of the autism spectrum.

I was diagnosed with Asperger Syndrome a year and a half ago (though I’d known the truth for several years previously), which I guess that most people in my life probably know by now because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of.  I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.

Anyway, so it had started to feel like old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life.  But then, I was rather emphatically asking my mother not to describe a young cousin (currently in the process of being evaluated for autism himself) as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.

“But you’re not autistic.”

Which is where my brain froze up.  Because honestly, I don’t know what else I am anymore.  Before I understood what autism really was, I didn’t know what I was at all, except for lost and completely alone in the world.

“I don’t think of you as really autistic.”

This is the hissy fit I had in my head after that conversation, after my verbal skills were drained and we’d both given up. It’s no longer directed at my mother (we had a good talk the next morning), but at the thinking that I was shocked to find is still common: that real autistic people don’t have personality, native intelligence, skills, or potential; and that anyone who’s achieved any degree of independence or success isn’t really autistic.

Because where’s the room in that thinking for things to get better for any autistic people?

If you can’t see me as autistic, then you need to revise your view of autism to take into account real people.

I am “not like that kid” who runs around screaming, or who can’t communicate at all, because I grew up.  And because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways.  I am “not like that kid,” because, to be perfectly literal, I am not that kid.

We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which TPGA editor Liz Ditz pointed out to me has the added metaphorical benefit of being a 4-dimensional construct; it also changes through time for every person). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists, or just incredible people.

I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it. I know that I’m blessed beyond all reason.

If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.

If you can’t think of me as autistic because I’m verbal and communicative … those things are actually features of Asperger Syndrome, a form of autism. We still have major communication difficulties and differences.

If you can’t think of me as autistic because I’m so good at my job … please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior.  (Actors were some of the first people to seem to want me the way I was.)

If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is. What you see when you see me do my job is the result of copious amounts of planning, plotting, mental choreography, scripting, queuing, pre-thinking, making spreadsheets and flow charts, preparation and learning from experience, and excellent assistants.  (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)

You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.

I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for. It is home. It is the reason I wake up in the morning knowing what universe I belong to, and go to bed at night knowing I’m not alone in it.

If you can’t think of me as autistic, it’s not so much for my sake that I care, but if it’s because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings? Then you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.