If you can’t…
December 27, 2011
I think I never intended to write this post. It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.
I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, 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’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.) 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 I’d started to think of it as old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life. Then last night, I was rather emphatically asking my mother not to describe a young relative, 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. Everything comes home to that. Everything. Before I understood what AS 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 everything I didn’t have it together enough to say at the time. This is what I’d say going forward:
If you can’t see me as autistic, then you need to revise your view of autism.
I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up. And because we’re all different, 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, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well). 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.
If you can’t think of me as autistic because I have so much personality…actually, we usually do.
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…read more about AS. Those things are features of the condition.
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), organizing, color-coding, 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, I adore you all so much.)
If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is…I can’t do it at all. I know I’m taking a certain risk in telling you this. What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too. (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.
If you can’t believe I’m autistic, what on God’s green earth do you think I am? Because I sure as hell failed at being normal.
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.
If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not 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. Because if your prejudice is that autistic people can’t be these things, 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.