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April 5, 2011 / Julia

Anatomy Of An Autistic

Writing is a struggle against silence. ~Carlos Fuentes

Passing as a non-autistic, passing as neurotypical, means that you never get to actually be human. Be a person. You just learn how to get really good at faking it. It’s not good, it’s not healthy, and yet how can you say no to a trick that gets you the human treatment, college, a job, a future, some sham at self-determination?

But that’s all it is: a sham.

These things have costs and consequences. You can bottle things up for so long; you can pretend to be someone and something you aren’t and never will be; you can do things which are exhausting, even actively harmful in pursuit of “passing”…

But in the end you are still an autistic. An autistic who doesn’t know how to be an autistic, much less a person, never mind an autistic person. And that’s an important thing to know how to do.

How to be.

Who to be.

Anatomy Of A Meltdown

My brain likes to alternate between being made of swiss cheese (full of holes to fall in and through and down) and wax (for optimal melting). I have meltdowns a lot, in part because I use the term “melting” very broadly. Meltdowns, moments in which one’s brain melts, are a physical thing, though they look different moment-to-moment and person-to-person. But they all start out the same, with that pressure behind the skull and the feeling of your thoughts evaporating, your language freezing, your body retracting inward. It’s called shutdown, meltdown, violent meltdown, tantrum, outburst, dissociation, a million different things, but they all refer to the moment wherein your body or your brain, independent of your vote, decides that it simply cannot and will not continue to function in this charade that wasn’t really working anyways and…

Well.

Maybe you don’t bang your head, scream, throw things, leave. Sometimes I don’t. Sometimes I do. Sometimes I incur brain damage. Sometimes I just sit frozen for an hour.

Passing tends to come to a halt when this happens.

Meltdowns are of course a bit more complicated than all of this. What they are, to me, is a descent. A black hole opens up and draws you in, in, in. It’s empty and silent and ringing with screams and your intestines get itchy and try to crawl up out your throat, or maybe that is just the pressure everywhere building, building until it explodes out or locks you down.

The worst part about any of it, for me, is the silence.

The complete and utter silence. Silence so deep it fills up your ears. Silence like a scream.

And what’s worse is that, when I’m melting, as I enter or exit, I am silent too.

It’s why I type so frenetically. Why I get so upset when the words don’t mesh just right, or when they build up and won’t come out. That silence is to be avoided at all costs. When I’m silent, when I have no voice, I might as well not exist. I don’t, really. I’m not properly a person. I must speak, type, make my voice project over their heads and into someone’s ears.

Anatomy Of A Passing Person

Passing is….

Passing is…

Well, passing is difficult, first of all. It’s constant anxiety, calculation, cognition, because remember, those of us who pass are trying to be a person we aren’t, a member of a species that, should it know our true identity, expels us. The trick to passing, to passing well, is to make it look natural.

Passing means repressing, memorizing rules, sublimating, jumping through hoops, and turning tricks so we can get the human treatment. It means making it so that when you reveal your diagnosis to someone they “never would have guessed it”.

Passing is supposed to be a good thing. It’s convenient for the enabled and beneficial for the passing. The passing gets college, health care, respect, an audience to speak to, friends, work, a house, etc.

What I want to know is why do I have to pass in order to implicitly deserve any of these things?

What I want to know is since when did being treated like a human being have requirements?

When I am actively, deliberately passing as nonautistic, I am supporting power structures I benefit from. I am saying through my actions that it is okay to divide the human race along these lines, to treat people who fall outside of these lines like this, to save all the privilege and benefits and nice things for the safe normal people, etc. And you know, there are a million reasons to deliberately do this, some of them okay and a lot not, but in the end I am still supporting and ironically benefiting from a power structure designed to oppress and disable me.

But there is nuance to this. Silence is safety, of course, and being safe is important. And we aren’t all cut out to be radical, kyriarchy-smashing activists.

And what of those of us who pass without really trying all that hard?

There is a certain amount of ridiculousness to that idea, of course. Of course we have to try hard, speaking (speaking!) and socializing and reacting and parroting like the neurotypicals around us takes effort even (especially?) when we don’t realize it. Being a fake person, a half person, a glass girl or a ghost takes work. We tend to burn out eventually, no matter how brilliant a job of faking it we were doing. Or maybe we develop depression, anxiety, dissociation secondary to our autism as a result of this facade? Perhaps we take an increasingly upped litany of pills to cope. At the very least, we spend so much time learning how to be an acceptable human being that we forget, or never learn, how to be an autistic one.

Or to question why the one isn’t the same as the other.

Anatomy Of A Monster

And what none of us passers want to talk about is what our passing does to those who can’t. Passing is necessitated because without it, we would be stuck being a Scary Disabled Person and everybody knows how well their lives are allowed to go. There is a pervasive, fundamental belief that disabled people are monsters, or else possessed by monsters. That disability is monstrous, and disabled people, by implication are either victims or monsters ourselves. And therefore any and all talk of accessibility, universal design, human rights, equality, self-determination, alternative modes of communication, interdependence, what it means to be human and in a communication, what needs are and what it is to have them, etc etc etc goes out the window. Our bodies and lives and minds can be medicalized and politicized, but our voices are silenced and we get redefined as not quite, or not even close to, human.

Maybe it’s that view, of autism as monster and we as victims, which makes people recoil so much from the word, from the idea, from the concept of someone who will need 24/7 assistance and someone who won’t but has the same label. People don’t know how to treat victims, except by recoiling, as if bad luck is catching. People don’t know how to treat disabled people except as someone blend of horrific and pitiful, and by doing so we are dehumanized and re-conceived as something manageable and avoidable and yes, monstrous. Unhuman.

To be disabled is to be dehumanized. To pass is to be re-humanized as an acceptable, safe version of yourself that does not actually exist.

Well. Hi. My name is Julia, and I am autistic, and I am neither horrific nor pitiable nor monstrous, and if I am so what? And I pass. Mostly. For now.

That’s right. There’s a monster in your midst.

Anatomy Of An Autistic

So it looks as if I have two options. Pass and learn, perfect, the art of being a person I’m not. Or don’t, and let everyone else define me as some entwined version of monster and victim, pity and revulsion and terror.

But there’s actually a third option.

I can humanize myself. I can define myself. I can speak for myself, as myself.

I can find out who that self is.

I can lean what it is to be an autistic adult.

To be honest? I don’t have the faintest idea how to do that, and I don’t think you do either. It’s not as simple as flapping in public or typing on my laptop when speech is too much. All I know how to do is pass, and to interrupt that passing with moments of confusion, furious honesty, rawness and vulnerability. The emphasis in education and intervention is to make the child look nonautistic, not to prepare them for a future as an autistic adult. And there a million more posts in here, and I will go back to writing them eventually, but the point is that a whole generation of us have graduated, we can pass now, and we don’t know who we are or what to do.

The anatomy of an autistic is a lot of sketched out, smudged charcoal lines and open uncontained spaces. It’s a free space to develop. It’s something that will fill in as disability is humanized, normalized, as autism is accepted, as I am allowed to be who and what I am and to drop the poor facade that got me so far without risking losing it all.

The anatomy of an autistic is perhaps a scary thing. So few people have filled it in before, and even those fleshed-out illustrations have been crossed out by the dehumanizing, pitying, horrifying interpretations superimposed by others. But there’s a whole generation of us coming.

And I? I at least am going to work it out.

Hi, my name is Julia, and I’m autistic. It’s probably the best thing about me. Check your assumptions at the door.

We write to fill a silence here.

 

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8 Comments

Leave a Comment
  1. adkyriolexy / Apr 6 2011 1:46 pm

    Thank you so much for writing this!

  2. Patina / Apr 6 2011 3:00 pm

    I’ve always thought of my meltdowns as falling down a rabbit hole like in Alice in Wonderland. I can’t speak, I can’t move, but I can feel and see all this chaos flying around me and I can’t do anything about it.
    Thank you for writing this.
    For me, since I know how hard it can be to pretend to be neurotypical when I’m not.
    For my sons, because I hope someday they can be accepted as they are so they won’t have to pretend as hard as I had to.

  3. SS / Apr 6 2011 3:25 pm

    I’m not autistic. Well, at least I don’t believe I am. But I’ve had far from a normal life, the most horrible childhood, and that has left me… Different. 10 years ago as a late teen I didn’t know the first thing about fitting in, as it was almost like people could tell there was something different about me from a mile off! Meant I ended up saying too much sometimes, too little at others. I’ve suffered with depression on and off for years. At that time I had no balance in my life and most of my days I spent scared of meeting people as I didn’t want to find out too late whether they were more accepting and friendly or not…

    Now? I’ve learnt the best way to be accepted is to be yourself. There are still people who shun me, no matter how I dress myself or how normal I try to be. I’ve gotten to the point now where I’ve completely given up on trying to pretend to be anything other than I am. And by doing so it has meant I’ve met the most genuine and caring people that I ever have done in my life. Yes, I still stay guarded, don’t tell people my full life history (even abbreviated) until I know that I can trust them, but I don’t try to disguise my “quirkiness” anymore.

    The thing is, by being myself, by doing the things I want to do, not only am I more liked for it, but I’m also happier. There’s only so much that pretence will do for you and it is least likely to pretect you when things go wrong. You end up in the wrong crowds, put yourself in danger all the time, instead of putting yourself in the right place amongst people that genuinely like and care for you for who you are.

    The other experience I can take from it is that I now see people for who they are, and not who I think they are. Creed, colour, sex, religion, faith, disability… All things that people are judged on. But what does it matter? As long as you are a good person (by which I mean not intentionally harming others) then I’ll never have a problem with you. There are too many walls and obstacles in life without putting extra ones in the way!

  4. Winn / Apr 6 2011 5:12 pm

    You’re such a good writer! Thank you for giving us your insight! 🙂

  5. Matt / Apr 7 2011 3:41 am

    Nice piece. I’ve had the experience of starting a new job lately. I’ve been having frequent internal meltdowns. The anxiety is agonizing. It is difficult to describe exactly what it feels like, but you did a good job describing it.

  6. eaucoin / Apr 10 2011 12:24 am

    You manage to express things I could never. My Aspie daughter and I were talking once about how people always end up feeling pity or contempt for us and how we’re more comfortable with contempt (we’re more comfortable with people thinking we’re this way because we’re lazy, deliberately ignorant, etc.). That other post about beating yourself up even when the bullies are not around, it’s a problem. I’m getting old enough that it’s getting hard to pretend (I was never good at it) and I have one friend on the spectrum who gets me. But I feel like I’ve spent my whole life with no goals or dreams except passing for normal, and lately it’s just not enough. I find myself thinking that I just need a really good place to hide, but maybe I just need more time to myself to destress.

  7. Ettina / Apr 18 2011 9:04 pm

    “And what none of us passers want to talk about is what our passing does to those who can’t.”

    And that’s why I refuse to pass. I have made a commitment to be myself, even when I fear repercussions for it. (Admittedly, I suck at passing because I have poor inhibition, but I’m sure if I really tried to pass I could come pretty close.) Even when I’m out about my disability, I have the option to try to minimize it and distance myself from ‘lower functioning’ autism, but I refuse to do so. The one kid I met who had the most similar way of being to me was nonverbal and wore diapers. I refuse to abandon him for my own acceptance.

  8. Theophilus "Theo" Mallinson / May 17 2011 1:31 am

    As a child, I knew deep down that if I couldn’t pass for competent, if I couldn’t throw all of the effort I had and then some into being as good as other kids my age, then I was worthless. Literally worthless. Unlovable. Expendable. The only word I had for myself was “broken” and I thought no one could ever love that.

    As an adult, people tell me I am regressing. I am not. I am finally allowing myself to just be. I am not like other people my age. I cannot be like other people my age. I refuse to be loved only on the condition that I live an illusion and put more effort than I have into being “good enough”. I am good enough *now* exactly as I am. I am not always verbal, I stim, I toddle, I get frustrated, I can’t count past thirty and I don’t know the six times table – and I’m due to graduate from an undergraduate degree. I am fine and lovable and beautiful just the way I am.

    And that’s terrifying. Terrifying for me, to try to learn a self-love I was never taught. Terrifying for those who taught me all my childhood that I was not good enough, that I wasn’t trying hard enough. They see what I’m doing and say I’m giving up, say I’m lazy, say I’m making excuses, I’m regressing.. They are so terrified of becoming disabled themselves that they refuse to accept the autistic me after the lie. They are scared of the consequences of daring to love someone like me.

    And what hurts the most is that I internalised so much of what was done to me that I am still often surprised to the point of near incomprehension that my life partners love me as I am, not “despite” my disabilities, not with conditions on how neurotypical I can make myself appear but exactly as I am. I have been made to feel for so long that I am obviously unlovable that I barely know how to react to love.

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