May 2, 2013

Dear Emily

Posted in Marginalization, Uncategorized tagged , , , at 1:44 am by chavisory

I meant to write this even before I knew that today (er, *cough cough* yesterday *cough*) was Blogging Against Disablism Day.  Hey, serendipity!

I saw this on Facebook, shared on a friend’s page, a few days ago:

Emily Xxxxx
Hey, my name is Emily. I’m 19 years old and I have high-functioning autism. I was diagnosed when I was 2 1/2, when my parents noticed that I stopped talking and developing normally. I never wanted to be snuggled. Loud noises scared me badly. I would parrot everything my parents said. I didn’t like people in general. I’d have a hard time sleeping at night. I was a very picky eater, and didn’t like things if the textures weren’t right. I also didn’t like it when things would suddenly change. Once I was diagnosed, I was put into speech and occupational therapy right away. My therapists thought that I would never be able to go to a mainstream school, learn how to drive, keep a job, or get married. I proved them wrong. I was put in an IEP program when I went to an autism preschool at 3 years old. I learned how to read when I was 4. I was good at remembering things with details. By the time I turned 5, my teachers ran out of things to teach me that were in their curriculum because I picked it up fast, so they started teaching me things that I would learn in kindergarten.
Now I’m in my freshman year of college,I changed my major this past semester to studying special education, and not social work. I work part-time in a call center for an anesthesia medical billing company as a billing specialist. I stopped being on the IEP program when I was in 9th grade. I have a driver’s license, I graduated high school with a 3.2 GPA, I’m engaged to be married next fall to an amazing guy, who loves me and accepts me for who I am. I still have some OCD tendencies, and I still have some texture issues when it comes to certain foods. For the most part, people can’t even tell that I have autism.
For you parents out there with children on the spectrum, don’t give up on them. Help them reach for their potential. Look for the talents that they have, and help develop them. My parents didn’t give up on me, and I’m forever grateful for them, because I get to live a normal life. I am getting married July 5th.
Thank you,
Emily

Dear Emily,

I saw your post on Facebook, through a friend’s page.  (I’ve removed your photo and last name.)

My name’s Emily, too.  And, with some notable exceptions, which we’ll get to, I could’ve written large chunks of your story.

You’ve done a lot, and you should be proud.  But your note left me worried and uneasy for you more than anything else.

*****

I never developed normally.  But I was misdiagnosed, and there were no IEP’s when I was in school anyway.  I don’t know if there were special schools in our area, but if there were, from what I’ve heard from friends who were in special ed, nothing leads me to believe that they would’ve been good places.  Speech and occupational therapy existed, but it had been decided that I was just shy and stubborn and didn’t want to talk, not that I was in fact having serious language problems.  Far from being told that I would never do things like go to school, live by myself, or get a job, it was just assumed that I should be able to do everything that everyone else did, and so no one thought that they needed to teach me anything.  I had to just figure it out.  It was fly or die.  And that much I knew for sure.

I read a lot.  Thankfully, my first grade teacher was good at teaching writing, and I loved it.  I spent a lot of time outside.  I learned to drive.  I was in gifted programs throughout school.  I graduated from high school with a 3.9 GPA.  I was captain of my scholar bowl team, copy editor of my senior yearbook, and editor of the school creative writing magazine.  I graduated from college with honors and with two degrees.  I learned to stage manage and held office in the college debate society.  I worked in a campus biology lab, for the local community theater, and then as a barista for several years.  I moved to New York with friends, and I work in theater full time now.

And for most of my childhood and adolescence I was in a desperate race to prove, both to myself and others, that I could do anything that I needed or wanted to do, because I was so (reasonably, as it turns out) terrified of winding up not being allowed to live my own life.

I’m hugely proud of a lot of what I did.  But I also did some fairly horrible things to myself, and it took me a long time to realize that the fact that I had to wage that war in the first place was wrong.

Recently I was out with a friend, and she said “Your education sounds like hell.”  I had to agree.  It was, and no one had ever said something like that before, or told me that yes, it was all real.  Most people trivialized it or called me spoiled or oversensitive or assumed that because I was smart, it was all easy for me, not that it was war, day in and day out.

*****

Sudden noise, visual over-stimulation, and unwanted touch still hurt me.  I’m still very sensitive to texture in my food and clothing.  I still walk on my toes, I have a strange gait and an accent that people can’t place.  Frequently my emotions don’t connect to my language abilities very well and so there are things I can’t communicate.  I worked really hard at developing speech, organizational, and motor planning abilities, but they can still be overtaxed, and I can’t go around expecting to be able to function in the ways a non-autistic person would take for granted, or to push my boundaries for extended periods of time.

And none of that is a reason I can’t be happy or productive or ambitious.  It does require that I honor how I’m actually built and how I’m not.

*****

I’m glad that I had people, who I know and who I’ve never met in person, in large ways and small ones, in words and not in words, deliberately, and not so much so, to tell and show me that it was okay to be autistic.  That it isn’t wrong.  We’re not wrong, to be this way.  That we’re okay.  That we’re supposed to be here.

I’m glad for all the writing and information from other autistic people that helped me put it together that autism is not what we can and can’t do.  It’s not how we’re defective or inferior.  It’s how we’re configured to process information, to feel, perceive, and use language, to learn and grow differently from most people, and there’s nothing wrong about that.

I don’t take pride in the fact that a lot of the time, people can’t tell I’m autistic, because all that means is that most people wrongly equate the condition of autism with prejudices about what we’re not supposed to be able to do, or with bigotries about us being incapable of empathy, love, warmth, or friendship.

These days, most people know that I’m autistic.  Partly because I write and talk about it, but partly because both my ability and willingness to expend energy on suppressing physical signals of autism have gone away.  I’m glad that I’d already read some of Amanda Baggs’s and Rachel Cohen-Rottenberg’s writing, so that I knew what was happening when it started happening to me and didn’t panic or blame myself.  My brain gives me fewer choices now about how I can and cannot abuse it.  I had to start letting myself feel what I feel and need what I need again.

And I’m better off.  I mean that.  I’m healthier.  I sleep better.  I feel like a whole person again.  I feel like a real person, like I fit in the world again.  It’s an incomparable experience, to know that you belong in the world exactly the way you are, that no one can take that away from you again.

*****

And the other thing?  That whether or not anyone can tell you’re autistic has anything at all to do with what kind of opportunities you have, or what kind of respect or affection you get from other people?

That’s wrong.  That’s bigotry by definition.  If you would be worse off if other people were able to tell that you’re autistic–regardless of your actual, individual character traits, qualities, abilities, and intelligence–that doesn’t mean there’s something wrong with being autistic; it means there’s something very wrong with how other people see us.

*****

By all means, we should tell parents to look for and nourish their children’s strengths, and believe in their potential.  But not giving up on your children doesn’t mean putting a premium on them having the most apparently normal life possible.  Normal and good, or worthwhile, or satisfying are not synonyms.  My life is hugely different from yours.  Other autistic people will have lives that look very different from mine.  And that doesn’t mean that they’ve failed.  That doesn’t mean that they or their parents did it all wrong.  It means that they’re different, and made the best choices possible for themselves, and that fighting their autism or any other aspect of their true natures into the ground was just not on the priority list when compared to learning things, or spending time with a topic of obsession, or just enjoying life for what it is.

What we did–to survive, to grow up, to have our own lives–is not wrong.  But a lot of the ways in which we were forced to were.

I think we’re capable of making a world where no one’s success or acceptance depends on how well they manage to look like something they’re not.  We all deserve better than that, and so do you.

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6 Comments »

  1. so glad you wrote and posted this. I saw the facebook share of emily’s story go around and it bothered me to.

  2. Honest, articulate, insightful, true. Thank you for sharing. I wonder if you’ve seen the film Mary and Max? Not meaning to force a neat connection, just curious. It has stuck with me a long time.

    • chavisory said,

      You’re welcome! Haven’t seen Mary and Max–will add it to my (somehow never-shortening) list!

  3. Also, I must say the juxtaposition of Emily’s final two sentences have me, from my own singular perch, a little uneasy for her! But I wish her well.

    • chavisory said,

      Yeah. Me as well.

      I mostly really hope that everything she’s got is what she truly wants. I just know that some really unimaginably huge things have changed for me since I was 19….

  4. Anonymous said,

    I enjoyed learning more about autism and how people function with it. Very interesting reading .I know Peyton is really smart and no one can tell how far he can go in life .I feel he is in good hands .not an easy position to be in. But u must admit a very interesting one God bless take care .Lots of love


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