This Is Why

So you need to know about Kimba.

I met Kimba three years ago. I walked into the lifeskills classroom at the middle school, and he was moaning and flapping in the corner. I kind of wanted to do the same thing but I didn’t, which meant that the teachers mistook me for a neurotypical like them, which meant that the first thing I got to learn about Kimba was that “he just tried to throw a chair at me.”

I learned a lot of other things about Kimba in the next few days. I couldn’t sit within four feet of him, because he would attack me—he didn’t like anyone except his aide, and he went after her pretty regularly too. He had successfully convinced the teachers for an entire semester that he couldn’t read at all, only to be foiled when they gave him a puzzle of animal names and he completed it perfectly. The only words he said were “NO!”, “BUH-BYE!”, and “ONE-TWO-THREE-FOUR-FIVE!”, screamed like something was breaking. About a month after I first met him, I learned two more things: he was a foster child, and the previous night he had attempted to beat his foster mother to death and had almost succeeded.

Here’s what I learned about Kimba over the next three years: he is incredibly intellectually gifted. He taught himself to read. He has a system in which he classifies every person he encounters as a different animal based on personality, appearance, relationship and attitude towards him, and the pleasantness of their encounter. He may be autistic, he may have various brain injuries, he might be selectively mute, he definitely had lead poisoning. He uses language obliquely, employing rich and innovative metaphors. He analyzes the symbolism in Disney movies, but his favorite television series is Kimba The White Lion. He taught himself how to use Google. He speed-reads. He spent the first nine years of his life in one of the most horrifically abusive environments my state has on record.

Kimba and I, now, spend most of our time in lifeskills together. We are virtually inseparable. I was the one who proved that he could read far above the level he was assigned. I am the only person he willingly lets touch his speech-generating device when he’s having trouble finding the words. He’s held my hand when I randomly dissociated, and he’s grabbed my phone and texted KIMBA when he thought I was spending too long talking to the White House. When he wants to bang his head, now, he grabs my hands and I squeeze at his ears until he can breathe again. He puts his hands on my head and does the same for me.

For three years, Kimba and I have stood (often literally) hand-in-hand, united, in our very different pain and very different ways, against a world designed to shut us out. I curled around him when he was having flashbacks and he copied my bitch-face and employed it against incompetent substitutes. I foiled his plans and told his general-ed teachers that he could, in fact, read very well, and he tried to teach me how to wink. When I left lifeskills for a while to attempt college I said good-bye and he held on and wouldn’t let go. I came back, defeated. We saw each other again and smiled with mouths that had forgotten how.

I wonder if he got so mad at me for going to Washington because he had overheard what was going to happen next.

While I was sitting in a humid room and watching as people stared at me and explained that the world would be better for everyone if we inconvenient autistics just didn’t exist, plans were being made to put Kimba away. While I was getting job offers for my distilled fury and ability to wax eloquent about how my life sucks, it was being decided that the considerable, unbelievable, overwhelming progress Kimba has made in every respect over the last three years isn’t good enough. While I was staring in disbelief as Geraldine Dawson pontificated about the suffering of “autism families”, people were sitting at tables, sipping stale coffees, and deciding that, since Kimba hasn’t recovered quickly enough from his trauma, he needs to be institutionalized.

It was announced today, and finances should be finalized by next week. On Wednesday, June 22^nd, Kimba will complete the seventh grade at the middle school. He will eat an end-of-the-year cupcake that we will make, as he will not be invited to participate with his general-ed class. We will carefully gather up the last of his projects and load them into the same battered backpack he’s had for three years, a backpack that will be thrown away with his projects that night because he won’t need it—any of it—any more. We will pack up his device, the notes we’ll have scribbled to his new staff saying he can read very well, actually, and here is a Kimba-to-English dictionary, you’ll need it if he ever decides to talk to you and the notes we’ll have labored over for him: love you, miss you, you’ve grown up so much, it’s going to be okay. We’ll smile, we’ll lie, we’ll tell him that he will love his new school and that we’ll be allowed to visit.

On Wednesday, June 22^nd, we’ll say good-bye and try to memorize what his smile looked like. On Thursday, June 23^rd, he’ll disappear into a residential program.

They said they know he loves animals. He can work on their farm.

I now count three kids I know and have worked with who, since December, have been institutionalized. This is three out of ten. Five out of fifteen, if I push the timeline back a year. We incarcerate people because they kill other people, because they rape or because they steal or because they make our world unsafe—and now, apparently, because they are just a little too inconvenient. Funny. You don’t even get a trial when your crime is drooling or not talking, when your sin is PTSD or autism, when the thing you did wrong was being born and then not quite meeting expectations.

You just get put away.

I wanted to tell you about Kimba. I wanted to ask you what I am supposed to do tomorrow morning. I wanted to say that it doesn’t matter that things this wrong aren’t ever supposed to actually happen; they do anyways. I wanted to see if maybe, now, you understood—I don’t write to touch, to inspire, to move people, I write because this happens every day, I write because how are we supposed to keep on, I write because a thirteen year old boy is being taken away.

I wanted to tell you about Kimba, because you have to understand that he underlines everything I say and write. I wanted you to meet him before he’s thrown away like human garbage. I wanted someone to give a damn. I wanted to tell you about Kimba because, because, because…

….because I can’t save this one, because I can’t save him, because we have sixty-two days, because oh god, oh god, I can’t save this one, because I forgot that even this tiny little somewhere-only-we-know only exists because nowhere is safe and nothing is allowed us, because oh, oh, oh. Because they are taking Kimba away.

Because thirteen is too young to die.

Disabled, Not Different

For a very long time I used to think I was different.

I wasn’t disabled. God, no, I was super good at math and hey, I read the unabridged version of Les Miserables when I was 12! I skipped eighth grade! I would be perfectly fine if people would stop just poking me all the time.

I was just different, they said, and they said it was cool and maybe a little edgy and it made me special and it meant that I was just as good as everyone else. I was different, see, that’s why I didn’t think that I had toes if I couldn’t see them, that’s why I spent the whole hour-and-a-half of geometry seeing how high I could count by 15’s, that’s why I knew when everyone’s birthday was.

No big deal.

I was just different, see, and so I felt things differently from my peers, and different things happened to me, and things had different meanings. I was different, and my world was different. That was okay.

Except for the part where it wasn’t at all.

See, here’s the thing. There is an acceptable margin of difference allowed a person, and an acceptable range of ways to be different within that margin, and anyone who pushes beyond that gets pushed into the Uncanny Valley. People in the Uncanny Valley are neither wholly human nor entirely nonhuman, which means we get the human treatment sometimes, and other times we get beat up until the uncanny parts of us are sufficiently chipped off.

As an Uncanny Valley girl, I can trick people sometimes—kind of a lot, sometimes. So people got really, really mad when they went to sit next to me and I punched them for being too close, because what the hell, that is not what a human does. I was a bad person, tricking them like that.

So I got punished.

When the beating was over, when they let go of my wrist or told me I could maybe come to the next party, I was always, always offered an out. There is a list, somewhere, of the acceptable ways to be different, and they would suggest that maybe I could fit myself safely into one of those boxes, chip off the bad edges off myself on my own, and be a proper human. Give them a break, you know. Help myself out.

I would like the record to show that I tried.

I could be gifted, right? I took graduate courses in psychology at Stanford during my sixteenth summer, that should seal the deal—but none of the other students had their A’s dropped to B’s solely because they hid under their bed, wracked with panic attacks, instead of going to class.

I could be a theater nerd, surely. I loved to mimic people, I loved plays and theaters, I could sing, I stage-managed like no one else—but you had to know how to control your body on stage, and maybe more importantly, you had to participate in the massage trains in the green room, so being in theater was immediately out of the question for me.

I could be a manic-pixie-dream-girl, right? That was like the epitome of different, and I was so very, very different. I only wore skirts, and I said strange things and repeated things over and over and scratched patterns out on my skin. Surely I just needed love, friendship, someone to save me who also needed me to save them.

I discovered, though, that manic-pixie-dream-girls don’t bang their heads, and when someone touches them they know how to let themselves be touched. They see the world differently, but it’s an endearing and quirky and acceptable and unremittingly real view, not one that is confused and forgetful and blurred and above all fleeting. They use words differently, but they use the same words as everyone else and they seem to mean the same things.

People like manic-pixie-dream-girls. Some people even like nerds, and gifted students, and kids who spend their Saturdays painting sets.

People didn’t like me.

They were so nice to me, carefully working at smoothing out my edges until I fit into one or another of the acceptable differences they offered me, and I was so ungrateful and selfish and obsessive, not cooperating with any of it. Where did I get off, saying I wanted to kill myself, failing tests, waving my arms around, saying things that just no one says, looking over their shoulders instead of into their eyes? Fine. If I didn’t want their help, I wouldn’t get it. See how I liked it then.

See, sometimes being different isn’t the best thing about you. Sometimes it isn’t allowed. Sometimes, if you grab onto that label too much, it gets ripped away from you. Sometimes, if you say you are different too often, you get to hear, over and over and over and over again, how everyone is exactly like you.

So you get mad, and you take them at their word, and you start asking awkward questions. Were they nicknamed Droolia? Did they get sexually abused when they wiped the drool away on their collar one too many times? Did they get denied medical treatment for their broken wrist because they didn’t cry enough to be in real pain? Can they look at a person’s entire face at once and see it all? Do they come home from school and lie under a blanket for two hours until their head stops echoing from the hallways? Do they know how to mix 50 mg of liquid Zoloft into 8 oz of orange-pineapple juice so the taste is perfectly hidden? How many friends do they have, and do they see any of them outside of Honors English? Can they scream, or do their vocal cords paralyze at the first flash of any significant emotion? Have they ever completed an entire test in physics perfectly, except for the part where every number—every single one—written down on their work papers was different from those given on the exam?

Oh. It turns out that was just me.

I guess I really am different, then.

No shit. Get out of here.

The moment when the Uncanny Valley mask slips and people realize you really are just hideously outside the acceptable range of different is not a fun one. It stays very Not Fun. It extends past a moment and into a lifetime. The question is asked: if you’re not even allowed to fake being an acceptable human, what are you?

You’re disabled.

I’m disabled. I’m not different at all, really, I’m much, much more like you than anything else—but that’s not seen, that’s not allowed, and so I am disabled. My Autism is not a cute, acceptable, or advantageous difference. It’s a disability. I was not born configured for this world, and it fell to me to make up that difference, and there were so many places where I could not close the gap.

I am disabled, and I will never, never be content to call myself “different” again. When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up. When you are disabled you don’t have that luxury. When you are disabled you have to prove, over and over again, that you are a real person—and then someone forgets, or you meet someone new, and you have to start again.

That’s not a difference. That’s a disability.

My name is Julia and I’m Autistic. I’m not different; I’m disabled. I can say it now.

But then, I didn’t have much of a choice.

Teach Me A Lesson

I take too long in the shower, I guess, and I think my grandmother thinks it’s because I’m getting off. Actually it’s not fun at all, getting lost in the overstimulation of water and steam, forgetting where I’ve put the soap or what I was just washing, fingers aching because they don’t know how much pressure to use when shampoo-ing, slicing my thumb open when I try to hurry up because I’m being scolded through the door. It doesn’t matter; she wants to teach me a lesson about wasting water.

Teach me a lesson.

I’ve heard that before.

It’s my brother, snarling “she has to learn” while I’m crying on the floor.

It’s my dad, in the car, (in the backseat) over the phone, at the bank, whatever it takes, consistency.

It’s my sister, grabbing my signing hands to hold them still, “stop when I tell you to stop, it’s common courtesy.” (Though, of course, should I tell her to stop touching me, give me space, stop making fun of me, stop saying that, she is under no obligation.) “I want to hear your words. No. Not those words.”

Teach me a lesson.

It wasn’t said out loud, but I heard it every day from the kids in my AP classes, eyes sliding over and past me. “What’s the retard doing here?” The face the teacher makes is apologetic. It’s not for me.

Teach me a lesson.

My friends never hung out with me outside the concrete walls of our school, but they did like making me practice the things I was worst at. Look me in the eyes, hold still, let me hug you. Keep that up and I’ll poke you. It’s your reaction, Julia, that’s why we do it, Don’t talk about that. The hell is wrong with you. Just be a person. Don’t think, just be natural, be yourself. Yeah, you’ll want to lie about that. There are no rules. We’re trying to help. You’re doing it wrong.

Teach me a lesson.

I want to teach you a lesson.

I want to teach you about the boys in Honors English and the smug pride they took in calling me retarded because “hey, it means slow. You are slow. It’s true. You can’t get mad at us for telling the truth.” I want to teach you about being harassed by airport security because I crawl through the checkpoints, my hands shaking and my mind spinning, concentrating on one step at a time. I want to be there when I snap “Sorry, I can’t go any faster, I’m retarded,” and I want you to be my heart when it stops beating.

I want to teach you a lesson about never wanting to sleep with someone because they’ll see the drool on your pillow—and everyone drools, true, but everyone has a horror of drool because that’s what the retards do, and most people don’t have to worry about being mistaken for a waste of space whereas I wait patiently for the inevitable moment when my lover, my one safe person, someone I tricked into wanting to be with me, sees me for what I am.

Should it be a lesson on dying? Lying on your bead, body tingling and mind dissociating, crying because this is it, you finally get to die, as your heart finally, fucking finally matches the rest of you and just, at last, I knew it had to happen, slows down. Breathes are slower and shallower and you can’t believe it—you always knew that this couldn’t be real, that someone as awful as you couldn’t actually go on existing, and you’d always wondered if and when the moment would come when your body would finally get what the rest of the world knew. You slow, you slow, this is horrible and fantastic and so wanted, so needed, finally—and then your lungs seize up and drag in breath after breath because no. You can’t even have this.

Teach me a lesson.

I have so much to teach you.

This Is Our Reality

Last year my parents and I were talking about prenatal testing. It comes up—I work in a special ed room, I had just learned about the abortion rates for Down Syndrome, we live on a street with four autistic kids, and I was discovering the Disability Internet. So I asked if they would have aborted me had they known how I would turn out.

My parents told me last year that, had they known I would have been born autistic, they would have gotten an abortion.

My parents would have aborted me.

I kind of want to just stop typing there.

This is real. It happens. It happens all the time.

(I know five other sets of parents with adult autistic children who have said the same thing. I have yet to find a pair in real life that wouldn’t. This is real. It happens.)

It’s all fun and games when I snark about ableism and eugenics and people respond with condescension and strawmen and the same non-arguments I’ve heard hundreds of times before. It wants me want to write additional fun facts about how the usual silencing tactics in this conversation are ineffective against me—you can attribute to me things I never said, but I won’t defend them because I am autistic and your errors, while interesting, are mostly just amusing and kind of annoying. I’m used to people not listening. It was the first fact I ever wrote about.

You know what’s not fun and games?

My parents would have aborted me.

Even knowing me, (then) eighteen years later. They would have aborted me.

It’s not that we don’t love you. We just didn’t know if you would have wound up like that kid up the road.

I don’t write as some Super Shiny Aspie (TM). I write as someone who spends her days with that kid up the road. I write as someone who has spent the past year of her life as someone who was told that her existence is a lamentable mistake caused by a technological lag. I write as someone who belongs to a group that isn’t good enough to be allowed to exist.

I’m not putting this under a cut. I want you to have to scroll through this. I want to scream about the gaping, oozing wound carried by every autistic—the you shouldn’t be here written in the margins of our files—and I want someone to listen.

The reality of an autistic person is this: your parents didn’t want you. They wanted a child they felt they deserved. They go to support groups and have a mourning period after a diagnosis which takes place in a cold white room with whispered voices. They are probably told to put you in an institution—as you play at their feet—or else you are subjected to hours of behavioral modification which does nothing for your ability to function as an autistic person and maybe a little something for your ability to embarrass your parents a little less.

People give up on you.

You go to school and the other kids call you retard, never bothering to learn your real name. You don’t sit with anyone at lunch. You play by yourself and you like that better than the abuse. The point comes where you realize that you can’t lift your arms anymore. They’ve been slapped so often for flapping that you have a terror of moving them.

You learn that different means harder means defective means not worth it.

Perhaps, like everyone else, you are born knowing that. One day you realize it’s meant for you. This is probably the same day you receive some official confirmation that people would really rather you weren’t there.

Everyone is generally very nice about it. What are you supposed to do about the nice people who don’t want you there?

You start, maybe, to learn some words to describe what it is to be you. You aren’t sure that they’re entirely the right words—you’re learning them from other autistics, and they get yelled at a lot of speaking up and trying to help you—and everyone else insists that they are very much the wrong words. You keep trying, though, because it’s the first time anyone’s ever let you think that maybe no one is ever good enough to exist and yet we keep on existing, and that means something to you.

Eventually you start saying these things on your own. (Maybe. If you’re lucky. If you’re listened to by anyone, which is a crapshoot anyways.) After a while you stop being confused by the things people yell back at you, because you realize they have nothing to do with what you are saying, and everything to do with you saying something.

The reality of an autistic person is this: you shouldn’t exist, and your defiance means you must be punished.

So no. I’m not anti-science. I don’t think being disabled is super fun. I don’t think anyone deserves to suffer, ever. (And, because I mention abortion, I’m also pro-choice!) I’m mostly someone who is tired of being run off the rails whenever she suggests that maybe she’s a person, too or that’s not very nice with very rational, condescending platitudes about intent and think of the family members and your life is wrong, that never happened and this must be so difficult for you, let me explain and above all: you’ve got it backwards, the world is actually flat.

I am someone who should have been, would have been aborted.

I am finally, finally speaking up for myself. You don’t have to listen. But you don’t get to tell me to shut up because my voice doesn’t belong. You are certainly allowed to take what I say however you want, especially as a personal affront directly targeted at you (I once used a similar configuration of words to something she is snarking about! I am the only person who has ever said this to her ever. She is attacking me, or at the very least responding directly to my mutterings. This is probably as close to a conversation as she can manage!) I understand that it must be very hard for you, hearing all of these inconvenient people speaking up and speaking out and making you uncomfortable. I will, however, ignore you attempts to make me shut up, stop, go die and speak a little louder instead.

I should have been aborted, and that is real, that is common, and I will share that story over and over again until I (finally) die because nonautistic people seem to think this conversation reduces down to something other than please go away you are scary.

My reality is that I’m not supposed to exist.

But I do.

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.

 

Speech (without a title)

Hi. My name is Julia Bascom and I’ve had it easy.

I had it easy. What this means is that in fifth grade I was the smartest kid in the class. I also did a lot of hiding under my desk, and I talked funny and moved stiffly, so the other kids formed a club. It had only one rule, the golden rule: you couldn’t talk to Julia.

I changed schools at the end of the year. I kept breathing, but then, I had to: I had it easy.

No one beat me up. They didn’t have to—I did a good enough job of that on my own.

I have a friend. We’ll call him Martin. Martin is autistic, like I am, although he doesn’t identify that way. In fact, nothing would make him happier than being just like everyone else. See, Martin and I are different. We both know that being different, being autistic, being disabled, is dangerous. We’ve both been bullied. We’ve both had it easy. We’ve both seen what our alternatives are—be just like everyone else, or don’t be anything at all.

The difference between Martin and I is that I know without a shadow of a doubt that this is wrong. Martin doesn’t.

Martin and I became friends because we were both worried about each other. Martin was worried because apparently no one had ever taught me how to pass for normal. I was worried about Martin and the way he was quietly twisting himself away. I only got more worried when he tried to teach me how to blend in, how to pass, when he yelled at me senior year for looking like that, because don’t you know you’ll get hurt, don’t you know you’ll die, looking like that?

I have another friend. We’ll call her Maria. Maria has also had it easy. She’s autistic like me, but she is more visibly disabled than I am. What this means is that when we went to get ice cream two weeks ago no one would sit near us. What this means is that people think that because I help her count out the money to pay for her order I should be ordering for her. What this means is that Maria is not permitted to just neutrally exist in public. Getting ice cream becomes an act of war.

I work with middle school students with significant disabilities in a mostly self-contained classroom. Some of them have had it easy—no one will talk to them, the other kids run away when they see us coming, the teachers don’t want them in their classes, but no one gets beat up. Some of them have permanent brain injuries from abuse. Like Charlie. Charlie goes into murderous rages and has almost killed people–he’s the sweetest kid, but someone decided to beat him enough that he doesn’t feel the world is safe for him. He’s right.

Kaley hasn’t been to school in two months. The social workers are sent away from the house and the state is content to leave it at that. I don’t even know if she’s still alive, and no one seems interested in finding out. Roger, who can’t feel or control his tongue, was kicked out of his foster home and into an institutional placement three days before Christmas because he eats too messily. His ex-foster mother now visits him regularly and expects him to call her “mom” and say that he loves her.

She says she loves him too.

The hell of it is, the world agrees with her.

Here’s the thing about being disabled: it sucks. It’s horrible in a million different ways, and not a single one of those ways is because I can’t do this or because I have this impairment. That would be too easy. Instead, every single reason translates roughly to because people are awful. Sometimes, for a minute, for a day, for a week, I think I can forget that. I delude myself into thinking that the reason I can buy ice cream without five different hostile stares, can be allowed to work in a school, can be invited to the occasional party, is because people really are okay, and not just because I have learned how to fake being normal, being human well enough to avoid some sort of weird ability-based xenophobia.

I’m wrong, of course.

I just spent seven hours at a conference about bullying. Here’s the genius behind really good, really effective bullying: it turns the victim into their own worst bully. I told you I never got beat up for being autistic. I want you to take a good look at me. See my glasses? Those are because I damaged my eyes banging my head in tenth grade. See the spots on my arms? Those are from where I tried to gouge out my skin all through high school. See the scars on my face? Those are a little more recent—same idea though: self destruct. There are a million more I can’t show you—even the insides of my cheeks are scarred. I can’t tell you how many pairs of sheets I’ve had to throw away because I woke up covered in blood—I’d tried to pick myself apart while I was sleeping.

I didn’t do this because I was depressed, or scared, or because I hated myself. I didn’t want to hurt. But I knew I had to. When I hurt, I was in my place. And smacking my head against a wall for an hour a day was ultimately less painful than trying to convince myself, let alone everyone else, that I was maybe, possibly, worth something just the way I was.

The thing about bullies is that, although they never go away—I went to a different school with different kids after fifth grade, but there were always plenty of bullies to keep me remembering—they cannot be with you every second of every hour of every day. They can do hundreds of subtle and nasty things to you, and they will, but eventually they will need to pee or go home or at least sleep. So what they do is program you so that you can continue to bully yourself in their absence. I still hear the chanted retards in my head whenever I play with a strand of beads. I still believe, in my stomach and pulse, the way you know to run from a lion or don’t jump in the campfire, that I shouldn’t be here.

I don’t need someone yelling at me to sit down, shut up, stop flapping—I do these things automatically now. No one needs to tell me that I’m worthless—I get that. Message received, message believed, message drilled into my bones. No one has to threaten and force me into some version of myself that is less visibly disabled, less obviously autistic, less real and I guess less threatening—I’ve carved off all those edges of myself into a smooth facsimile of what I need to be.

(That’s the only reason I’ve ever “had it easy”. Because I could do that. Because I have, or had, the rare ability to pull myself apart and twist myself into some new shape when ordered. I’m lucky, in other words, that I don’t have any glue holding me together. Lucky to be broken, because then there is nothing left for someone else to break.)

What I’ve just described is “having it easy”, and it’s actually not easy at all. It’s complete and utter psychological and emotional warfare, and there is no winning for us—they, the bullies, set the rules and the terms and they always win. Millions of us live like this every day—we have it easy, we can’t complain, this isn’t something that can be solved with curb cuts or an act of legislation, and so we die the death of a thousand cuts.

I told you about Martin, earlier. Martin always beat me on quizzes in class, but there is one thing I know that he doesn’t. I know that this is bullshit.

Here’s the secret. There is, in fact, one way to beat the bullies. See, what they want is to work themselves out of a job, to have you doing their dirty work for them. They want you to beat yourself up. So the way you win is by stepping out of the game entirely. The way you win is by knowing, being absolutely and irrevocably and 100% positive, that they are wrong.

It’s the tiniest thing.

It’s almost impossibly hard. How do you discover the world’s best-kept secret: that despite what you’ve been hearing since you were two and your parents started dragging you to doctor after doctor and the other kids stopped playing with you that you are actually perfectly fine, just fine?

When you are disabled, you are sick in every sense of the word. Disgusting, scary, dangerous, broken, wrong. Lesser. I knew this, had it memorized and lived my life accordingly. But one day I met someone else who was sick. “You’re sick!” I protested when they insisted on acting like a human being.

“Yeah, I am.” they agreed. “So are you.”

And then one morning I woke up. I was still sick. And I was also fine.

I was fine.

There is no equivalent to a GSA for disabled kids. We have to pass it on like a secret. You’re okay. We’re okay. Everyone else is wrong. We have a right to be here too. We’re not just sick. We’re not in doctors’ offices all the time. We’re okay.

We need that support, need some sort of physical community. Passing it on like a rumor isn’t enough. The moment we realize that the hateful people who fill and control our lives are wrong is the moment when everything can finally start to change. That moment shouldn’t even have to happen—it should be something that we just always know.

Things won’t get better until then.

Good-bye. My name is Julia Bascom, and I am, always have been, and always will be, fine.

Thank you.

 

 

 

 

 

The Obsessive Joy Of Autism

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are: sudoku and Glee. I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now. It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Glee in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”.

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

 

Grabbers

It’s a grabbers vs. flappers warzone.

On the one side are the flappers. We wave and twist our hands in front of our faces or slap them against our chests. Our heads punctuate our moods and the music against the wall. Our knees don’t bend as we walk on our toes, our fingers pick at cuticles or scratch patterns against our forearms and cheeks, and we’d rather watch spinning pinwheels than drown in another person’s eyes.

(Our joy is own own, and we communicate it differently, perhaps holding privately onto it, or pouring it out into another person. But soon we learn from the grabbers that our joy should be our shame, our movements not our own, and so we withdraw.)

What else is there to do when you are surrounded by grabbing hands but shrink in on yourself?

The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them—and that’s really the goal, being just like everyone else, and so there is not even a second of hesitation in their eyes when they slap our hands down onto the table with a shriek of “quiet hands”.

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.” They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

“Please let me go!”

But protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self. The most basic human thing is just existing in space, and you quickly realize that you do even this wrong. Is it that you take up too much space, or just that you do it too differently, moving in an entirely alien way and triggering some sort of dormant xenophobia?

In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine. And you learn that a relationship, if you can call it that, always has two roles, a flapper and a grabber, and you will always be grabbed, and never be permitted to grab back.

Diary Of A Drooler

This is a story about disability. This is a story about the politics of drool. This is a lot of things, and maybe you should just read it.

 

1.

So I want you to imagine being born a drooler.

We’re not talking just the adorable amounts of saliva an infant will naturally produce as their teeth come in. You grow up with that, sure, but then it never goes away. Some quirk of muscular development and oral-motor control leaves you with a constant stain of spittle around your lips and on your chin.

You grow up.

You have a small toddler friend or two, before anyone knows better. But you grow apart, and then one day in kindergarten you turn away from your playdough to answer someone’s “hello” and a string of drool lands on the tabletop.

Your cheerful “hi” is answered with a laugh, a stare, a jabbing, gesturing finger.

You remember your mother, always scraping at your chin with washclothes and whispering implored reminders to “swallow” and keep your mouth shut. You realize that no other kindergartener has sleeve cuffs which are crusty from reaching up to wipe their mouths every five minutes. The florescent lights above burn through your back, your playdough feels gritty in your fingers, and you’re sure that you’re about to melt under the table in a puddle of drool because you legs get this horrible shaking feeling as though they’re made of water. It spreads, and it’s like a wind or a shudder goes through your stomach and leaves your head empty and clear.

2.

You don’t realize it at the time, but you are one of the lucky ones, in a way. You do learn to go through life with your lips clamped shut around each other. You learn to swallow so that your mouth is always perfectly dry. Your fingers constantly flutter to your chin just to make sure. You spend hours each day just concentrating on the muscles of your jaw and mouth, more intimately acquainted with them than any other part of you. In some ways, you stop being conscious of yourself as anything except a mouth. The rest of your body seems far-away and empty, everything caught up in your war against your own saliva.

It doesn’t sound it, but you are so incredibly lucky. If you just fake it well enough people don’t think of you as a drooler, just another distant and distracted and distrustful kid. It will be years before you are first called retard, and for a very, very long time you are sure you can get away with it, be just like everyone else with one tiny little secret.

You never go to sleepovers or let yourself fall asleep on the bus, because you can’t control it when you sleep and you know that drooling is just a disgusting crime, grosser than eating your boogers and punishable in all sorts of intricately painful ways. But it really does seem as though, so long as you take some reasonable precautions and devote three seconds out of every minute to monitoring your mouth, you’ll be just fine.

And then you’re in middle school and everyone is laughing at some joke and it happens again, in a rare moment of laxness, and then everyone is laughing at you or else pretending not to see—and you never thought that could actually be worse, but it is—and you realize that no, fuck it all, you’re never going to get away with or from this.

You don’t want to be a drooler. No one wants to, and no one wants them. If there is one thing every middle schooler needs, it is to be wanted, even as just a friend, by someone. To belong, to fit in, to have a place where you are welcome. Droolers get none of that. But you’ll be fine. You’ll just try harder and take what abuse you get (because you deserve it, you can’t even control your own secretions) and everything is going to be fine.

3.

But your brain starts to shift a little.

You hear your voice on a recording for your answering machine for the first time and you spend the next five minutes wondering who punched you in the stomach. That voice. Is it really yours? It doesn’t sound anything at all like the one you hear in your head, and when you ask your mom mutters something about sound waves and bone conduction but all you can hear is that stupid, round, fishy, wet voice that you’ve apparently been using all your life. You had hoped you were a lot of things, fierce and funny and smart and competent and cool, but that, that is the voice of a drooler. People don’t even need to see your baby pictures, they don’t even need to see you compulsively swallowing to the point that your mom takes you to a doctor and asks about tics, because they can tell the instant you start talking.

You start to wonder if this is some great cosmic secret that everyone else got to know before you, and the thought makes you feel lost and sick and pathetic and you just know that you’d better be getting comfortable with that feeling because it’s going to get awfully familiar.

And you fight, you feel like a baby kitten but even they have claws so you scratch and fight and do everything you can to keep that feeling of utter uselessness from settling permanently in you. You sign up for all honors classes for next year and you try to dress like the most popular girls and you try out for soccer even though you are the best in the whole school at tripping over your own feet and you are so damn happy when Eric asks you to the eight-grade graduation dance that you let him kiss you afterward even though he tastes like pepperoni and smells like too much cologne.

And the kiss is horribly wet and sloppy and you are now known as the worst kisser in your whole year and you just want to die.

4.

 

High school is unremittingly terrible, even though you aren’t caught drooling once. But you make tiny mistakes in every algebra problem that create bigger mistakes and big, ugly red ‘F’s even though you are good at math and you love it. But your teachers talk so fast and you can never make rhyme or reason of what they say and so you spend your classes wondering how you can be so smart and yet so dumb and if you ever were smart at all and how are you going to past this test, and when that gets boring you draw passive-aggressive comics about your “friends” and their stupid boyfriends eating poisoned chocolates and getting stabbed with lightsabers. Everyone else bitches about long hours spent studying and you wonder if you should tell them that you are up until two every night just staring at your textbooks and worksheets and googling frantically and unable to make sense of any of it, somehow managing to string enough figures and terms together to create a passable bullshitting act that keeps you in the honors track with them. But you don’t tell, of course you don’t, because then people would find out and you can’t be found out again, you’re pretty sure they would kick you out of your classes and being able to scam your way into that elite little group of scholars is the only thing that makes you think that maybe you don’t deserve to die.

But one ever tries to kiss you again, or even invites you to a single party for four years, and every time you remember this all you can see in a spot of drool swallowing up the latest 68 handed back to you in geometry.

It doesn’t make much sense, but you come to see every little imperfection as a crack breaking across the surface of your act, ripping apart your pretensions of normality, of superiority, and it fills you with hate and fear and makes your nose ache with the smell of rubbing alcohol and your palms punch into your thighs until they bruise.

It just steadily keeps on mounting up, and every morning you wake up with a sticky chin and damp pillow and it gets harder and harder to climb out of bed. You know you’re failing on every level, but you’re terrified of what will happen if you stop. So you get up, day after day, and emerge every day from high school battered and empty, and that awful feeling of watery legs and a shivering stomach becomes your default setting.

You realize that you’ve never really left kindergarten.

 

5.

 

The admissions officer asks you, sounding bored, who you are, what makes you tick. And you just sort of stare blankly back, because you’ve been trying not to think about that since you were five and somehow, explaining that you’ve spent your whole life just pretending, and passing, getting by and trying to blend in and not let anyone see how empty you actually are, just filled with drool…that doesn’t seem like the sort of answer expected.

You realize that you can’t answer the question, you don’t know how to even begin to think about the answer, because sometimes you are so focused on swallowing and sealing your lips that you forget the rest of your body and just sort of bounce along the lockers as you navigate from class to class. You want to tell them that your earliest memory is of a washcloth against your face, that your first nickname was “Droolia”, and that this one special ed boy absolutely terrifies you because he has to wear a kerchief around his neck to catch his drool and what if someone connects you two? You want to ask if they’ve ever been sitting in English, doodling in the margins of a vocabulary worksheet, and then suddenly felt like they’ve been running for miles, so out of breath with their heart hammering in their heads, legs watery, shivering and shaking. You want to tell them that your least favorite thing to do ever is to go to the dentist, because your mouth is open and you can’t swallow for half an hour. You want to point out that you never smile for the camera, that you actively run away whenever a camera comes out because the area around your mouth is so slack and rubbery and you just cannot control it.

You smile and say something about liking to draw comics and observe people for new material.

6.

You fall asleep on a pile of your comics at RISD, and when you wake up they are wet and sticky and ruined.

They’re due tomorrow. Or today, actually, since it’s three in the morning. You can’t ask for an extension—what are you supposed to say, sorry I never learned to control my saliva, can I have an extra day to redraw them because I drooled all over them?

You drop out instead.

You drop out of everything.

7.

And the boy who pointed at you in kindergarten? Eric, who kissed and told? Your friends, who never bothered to ask why you wouldn’t come over to their sleepovers? Everyone who ever let you know, subtly and quietly, that you were fake and damaged and disgusting, who may have only said that out loud once or even never but who always gave you a million little reminders?

The ones who broke you apart because a few of your muscles developed a little more slowly?

They are just fine.