December 27, 2011

If you can’t…

Posted in Marginalization, Reality tagged , at 12:04 am by chavisory

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.

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14 Comments »

  1. Dan said,

    Beautifully written. Gotta add you to my RSS so I’m not visiting only when I happen to see it on facebook…

  2. Loved this post. I can certainly relate because even though I’m very intelligent and am in graduate school in pure math and love to write novels, I am autistic. Sometimes when I tell someone I’m autistic, they can be surprised. Yet I’ve always felt out of the loop in the non-autistic population. I like your analogy with the constellations.

  3. I too like the comparison to a constellation or galaxy. Sometimes I think to myself, “Well, I can’t be autistic because I can do this and this and this” but other times I plainly see how “behind” I am at simple things than “normal” people. I also like “quotes”.

    • Emily said,

      I have those same doubts about being autistic, and in any other context realizing how “behind” I am would be a source of discomfort, but when it comes to reassuring myself that “yes, there is a reason for how I am, and that reason is autism”, then being behind is a source of comfort. It legitimizes me when I’m stuck in my own cycle of self-delegitimization.

  4. Emily said,

    I don’t like the reason you had to write this post, but I love this post. I think my brother is in the same mental place as your mother. It’s a particular kind of frustrating when you have been given an answer that explains everything PERFECTLY, and someone else doesn’t see it. It’s hard to imagine how it cannot click for them like it clicked for us; it’s not like we were doing fine and then were told we were autistic and suddenly started having all these difficulties.

    And it’s so true that when we do manage to be good at something that is usually considered a difficulty for people on the spectrum, it’s because we work really, really, really hard at it for a really, really, really long time. We exhaust ourselves doing these things, but for a lot of us there has simply not been any other option. We work around all the ways in which we can’t do something to create a way in which we can. It’s inefficient and it often has really negative consequences, but when there is no choice, there is just no choice.

    And we grow up, and we’re all individual people, and everything else you said here – all of it – it’s good stuff.

    • Yes it sure does have negative consequences. I worked for ten years as a social worker before I burned out in 1993 with ME/CFS. I haven’t yet gotten my health back. Social work was such a mismatch, but I hadn’t heard of Asperger’s back then.

  5. Emily said,

    (I also like the constellation analogy, which is one of the reasons my new potential blog title doesn’t feel quite right to me.)

  6. I saw this post a few minutes after you put it up but could only sit here thinking, “Wow!”
    I am still stuck for words, other than “wow,” so I’ll leave it at that.

  7. kiwigirl said,

    Love, love, love this. Especially the line “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.”
    That about sums it up for me too. I’m still trying to (afford to) get a formal diagnosis, but i’ve known i’m AS for some years now. And i’ve known since i was about 7 that i’m not ‘like others’. I’ve struggled all my life, been called all sorts of names, had heaps of difficulties, yet some members of my family, when i first starting talking about my having AS, said they ‘didn’t see me as aspergers’, or ‘it must be really, really mild’. Thankfully, they have come round now, to some extent anyway, but only after a lot of talking and my writing a piece about my life to date.

  8. Debbie B said,

    What is “normal” anymore? All of us are struggling to keep it together in this crazy world we live in these days. Being constrained by labels does not help.

    I was recently diagnosed with a brain tumor and this has freaked out people around me as – a person with a brain tumor is a category as is autism. The label starts to become more important than the actual person.

    My nephew has autism and is still struggling to find his place. I applaud Chavisory for finding his and for fighting the labels that really don’t help.

    • chavisory said,

      I’m sorry; I think you misunderstood my post. I am NOT fighting labels. In fact, my current post is about the value of labels when they’re used correctly to identify a group of people who have similar experiences and difficulties.

      And there’s an argument to be made that there really is no such thing as “normal,” but there IS such a thing as autism, and clinging to backwards stereotypes about what we can and can’t look like, and what we can and can’t accomplish, and what we can and can’t grow up to be–is what constrains and devalues the lives of the autistic. Prejudice and ignorance do that. Not the label. Because sometimes the labels really DO help. I didn’t know how to find the people who could really describe my life and my experiences until I figured out what my label was supposed to be. I’m immensely grateful for it.

      I suspect that your acquaintances’ reaction to your diagnosis has more to do with societal attitudes towards the ill or disabled, rather than the fact that you now carry a label.

      I wish you well–and your nephew with growing up to figure out where he belongs.

  9. Diane Vickery said,

    There has been considerable discussion over a number of years about the relationship of Autism to Asperger’s. There are similarities, but also differences. Now, they are covered by one diagnosis, but for many years they were not. Actual interest in, and knowledge of both is also relatively recent. Thankfully awareness is growing, but even finding a truly knowledgable psychiatrist or therapist these days is not an easy thing.

    When I was in medical school, the “refrigerator mom” theory was all the rage. So not only did the mother have a unique set of challenges with a severely disabled, screaming child, she was vilified as the cause. Many in the field continued to blame the mother for years, and perhaps some still do. The child in question would have been considered autistic by previous definitions, which have only recently changed to include a much broader spectrum of individuals.

    I think this perspective is where most people come from in their concept of autism, if they know anything about it at all. It will take time and education for a new common understanding to emerge. Your openness about your personal strengths and challenges is a brave step in that direction. But, as they said on HILL STREET BLUES, “Be careful out there!”

  10. David said,

    Thank you for sharing. I’ve often tried to articulate “my autism” unsuccessfully. “If you can’t believe that I’m autistic because…….” is the perfect way to begin that conversation. Your “multitasking” explanation is exactly how I survive in a multitasking required job. I can’t multitask but I have created my own accommodations to appear as if I can. “I’m not that kid”…usually, unless you saw me freak out this morning when I couldn’t find my wallet and I was running late. Just because you don’t see it doesn’t mean that it’s not happening. Great post – thanks again!


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