Just Stimming…

A land we can share (a place I can map)

This Is Our Reality

with 13 comments

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.

Written by Julia

April 10, 2011 at 1:18 am

13 Responses

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  1. was recently diagnosed with generalized anxiety disorder, depression, restrictive anorexia nervosa, and possible obsessive-compulsive disorder. it’s not autism, but i too, know what it’s like to have my voice taken away from the neurotypical society.

    i apologize.

    thereisfuckingwaldo

    June 3, 2011 at 8:05 pm

  2. This is why the idea of prenatal testing for autism is scary for those who have autism. It could mean that many of us who have autism might not even get the chance to live. We can see it in the case of Down Syndrome. Despite what some neurotypicals might think, I know for certain that we are more than good enough to be allowed to exist.

    clydethecat

    August 22, 2011 at 1:10 am

    • The entire crux of my argument is that there is no good enough to exist and yet we all exist anyway.

      The instant we start trying to justify and apologize for our existence, we lose. Thinking in terms of good enough implies that there are people who aren’t, and I don’t believe that and am not willing to say that.

      Julia

      August 22, 2011 at 12:31 pm

  3. As the grandparent (and now acting parent) of an Autistic child, I can tell you that your parents may have had an alternative thought process from the one you envision in this article.

    I am pro-life. I also believe that every life is valuable.

    BUT

    You are fortunate. Your Autism is higher end. You are able to pontificate and elucidate to your heart’s content. Spend some time with the severe and profound Autistic child and you cannot tell me with a straight face, especially with your pro-choice bias, that — God forbid — you find yourself in a position having to make this choice some time down the road that abortion won’t be a consideration.

    Faced with the possibility that you could be severely Autistic, and would likely develop as non-communicative and unable to interface at even the most basic level with society as a whole and people individually, it is entirely possible that your parents were thinking of how _you_ might feel (locked away in a private prison with no door out). As much as I hate abortion, some might find it preferable to a lifetime of institutional care, (essentially) incommunicado. Sometimes love is letting go despite the pain.

    And there it is. Your parents love you. And would have either way.

    ttocsmij

    October 24, 2011 at 11:03 am

    • Kindly do not presume to know my parents better than I do, my autism better than I do, my functioning abilities better than I do, or my life better than I do. And as a sidenote, I do, in fact, spend large chunks of time with nonverbal autistic people, which should be easy to glean from this site. I can indeed tell you that eugenics is still abhorrent, that institutionalization is not an acceptable alternative, that everyone communicates, and that disability rights are for everyone. After your first, personal paragraph, there is not a single accurate statement in your comment. Not a one.

      Julia

      October 24, 2011 at 1:28 pm

  4. I don’t know you except through your writing. But I am glad you exist.

    M S (@mimicoyote)

    March 17, 2012 at 1:51 pm

  5. […] This is our reality […]

  6. […] “This Is Our Reality” – about the effects of hearing that your mother would have aborted you if she’d known you would be the person you are. […]

  7. […] “This Is Our Reality” – about the effects of hearing that your mother would have aborted you if she’d known you would be the person you are. […]

  8. Your a good writer Julia. Keep it up.

    Ladyofroyalhorses

    March 14, 2016 at 2:34 am

  9. Reblogged this on Appalachian aspie part two..

    Ladyofroyalhorses

    March 14, 2016 at 2:56 am


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