Apr 02, 2012, 8:30 am
Tags: , , , 18 Comments

Usually, I just rant on Autism Awareness Day. This time, I figured I’d chill out and actually talk about my experiences with autism and why awareness is important to me.

I do have to get my annual Autism Awareness Day requests out of the way first, though:

  • Please do not donate to Autism Speaks. The vast majority of their income goes to research so they can eradicate autism, instead of supporting existing autistic people; they use incorrect statistics; they create advertisements that paint autistic people as monsters and burdens; they fearmonger, they lie, and for an organization that calls itself Autism Speaks, they don’t seem to care one whit of what actual autistic people have to say, given that they have no autistic individuals on their board.
  • Instead, if you feel the need to donate, please consider ASAN–the Autistic Self Advocacy Network. Nothing About Us Without Us.
  • Many blog posts today will spread misinformation, make gross simplifications, be condescending, and generally ignore autistic individuals in favor of talking about their non-autistic family. Please avoid playing into this trend.
  • (Also avoid using the puzzle piece symbol, if you could.)
  • If you want to learn more about autism, please try to get this information from autistic people, and not solely from families or organizations. We should not be shut out of these discussions.

Okay.

The below is very personal, and not always cheerful. If that makes you uncomfortable, you probably want to look away. I promise you, we’ll go right back to our regular writing-related ramblings later this week.

Looking at me, people would not peg me as autistic. I stim–usually by rocking back and forth or tapping my foot–but not outrageously so. I can communicate clearly and effectively. I am social, excitable, and have no problems recognizing expressions or moods. Although I’m sensitive to sound and touch, I’m unlikely to have extreme reactions.

(Well, I once kicked my grandmother when she tickled me without warning. Sorry, Grandma.)

All of that means that I’m privileged. Complete strangers won’t look at me with pity or condescension. People will never call me a retard. I’m capable of taking care of myself, and I can manage friendships and relationships.

So why is autism awareness important to me?

Because without awareness–the good kind of awareness, not the trendy kind that focuses on little kids only–people don’t believe that I’m autistic. Family, classmates, teachers, co-workers, government officials, my own doctor. When people hear about the problems I do have, they’ll disregard them, because, hey, look at me! I’m young. I’m normal. Clearly I’m in that group of kids who were misdiagnosed as autistic, and now I’m taking full advantage of it. I’m doing this for attention!

I’m… not doing this for attention.

This is how autism has affected my life: I had my first suicidal thoughts at eight, and had to drop out of high school at fourteen because school–with so many people and classes and demands and responsibilities–meant that I could no longer walk down a street without wanting to throw myself in the path of an oncoming car.

I’m no longer suicidal or even depressed. I like my life. I like myself. I’ve improved by leaps and bounds. I even dig my autism, because for all the bad things it’s caused, it’s done a lot of good things, too. Above all, it’s part of me.

But: I’m on disability benefits, because even working one or two afternoons a week caused so much stress that I struggled to get anything done around the house. I’ve never been able to eat normally, and will gag uncontrollably when made to eat food I can’t handle. I’ve consciously had to train my social skills; I was very proud when I finally learned to say ‘Have a good night!’ to people. (Unfortunately, I blurted it out during mornings and afternoons as well.)

I can talk about how I prefer certain shapes of forks or how I can’t handle certain sounds or how I still can’t make eye contact or how when I get stressed sometimes I’ll slap myself in the back of the neck, but what it comes down to is this: That I’m doing well doesn’t mean I’m any less autistic. Put me back in school, give me a job, force me to eat a normal meal, put me in a situation I can’t deal with, and I’ll go right back to freaking out because I never built up a script to deal with those situations.

Like I said–I generally like my life. I don’t want pity. What I do want is understanding, and that’s why awareness–the good kind–matters. I have learned to adapt to the rest of the world so much, and if there’s things left that I can’t do… please take my word for it. Please don’t think I’m taking it easy on myself. Please don’t laugh in my face and go, “Oh, please, like you’re autistic!” Please don’t tell me a positive attitude is all I need to hold down a job.

It’s not encouraging. It’s not a compliment. And it’s not true.

I am at peace with my limitations, and I wish more other people could be, too.

Thank you for reading this.

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18 Responses to “Autism Awareness Day”

  1. Reply Adam Heine  () says:

    Thanks for writing it, Corinne. That can't have been easy. I'm so glad I got to read it, though.

  2. Reply Ruth Lauren Steven  () says:

    Corinne, can I ask you a question? (1. You have my email if you'd rather use it 2. This is coming from someone who has a 'coke' glass, and an 'oj' glass and don't get me started on spoons).

    If/When you get a book deal and the publisher asks what you'd be willing to do to publicise it, how do you plan on handling the potential public speaking/readings and school visits?

    Maybe the thought of those things doesn't bother you because it's not small talk, it's your book you'd be talking about. But I'm asking as someone who would have an enormous problem with these things that I don't know if I could deal with.

    (I don't have a diagnosis of Autism by the way. My son does, though.)

    • Reply Corinne Duyvis  (corinneduyvis) says:

      The other day my mother wanted to use milk glasses for orange juice. I gave her a very stern look.

      I haven't done any public speaking in a very long time, but I think I could pull it off. I'm not sure how well I'd do at school visits because I'm super awkward around kids, but in general, as long as I have time to prepare, I do fine with most social affairs. It's been a slow process, though. I still catch myself slipping on occasion–blowing up at someone when they don't react the way I expected, going from zero to freak-out when my plans go awry, et cetera. I had a minor melt-down this week when my travel advice from different websites was contradictory.

      I suppose I'd just keep my fingers crossed for those readings not to catch me off-guard. *g*

      I don't think it's necessary to worry about it at this stage–though you could potentially discuss it with your agent if it does bother you. Publishers want authors to do publicity, but from what I've heard, they often won't push you into doing something you're uncomfortable with. Readers know when authors are genuine about their publicity efforts, anyway.

      Good luck :)

  3. Reply vanessanorthwrites  () says:

    Thank you for sharing your story and experience, Corinne.

  4. Reply Melissa Maygrove  () says:

    Thanks for posting this, Corinne. My two kids with autism are younger and are only now getting to where they can talk about their experiences in this way. They're both on the high-functioning end of the spectrum, and my daughter looks so typical that people don't believe me when I tell them. (They weren't around when she had no functional language at the age of 3.) I know it wasn't easy for you to post such details about your life. Thank you for taking the time to give us a glimpse.

    • Reply Corinne Duyvis  (corinneduyvis) says:

      Thanks for sharing your experiences too, Melissa. I'm always relieved to hear from parents of autistic kids–because those parents taking the time to listen to other autistic people's experiences usually means they're taking the right approach. :)

  5. Reply @madeofsilva  () says:

    thank you for sharing <3 I'm glad I got to learn more about you, lady.

  6. Reply Laura  () says:

    This was a very honest and beautiful post, Corinne. I, too, find it annoying that autism (and a myriad of other things…) are depicted as something that need "curing" or people speak about the way to "fix" it would actually asking the people who HAVE that "disorder." I've come across it over and over when researching different aspects of being intersex, and it makes my blood boil.

    I forgot yesterday was Autism Awareness Day, but I listened to this TAL podcast, and one of the sections is about a man who was married for a few years before his wife realised he was autistic and he trained himself to react better to her to smooth over their marriage. I found it really interesting.
    http://www.thisamericanlife.org/radio-archives/ep

    • Reply Corinne Duyvis  (corinneduyvis) says:

      Yes, the mainstream depictions of and conversation around autism are… hurtful, to say the least. And, like you say, it's not better with a lot of other conditions. I wish people would stop making assumptions about and speaking for groups they're not a part of. Sigh.

      I'll make sure to listen to that podcast–thanks for sharing! Thanks for commenting, too. I appreciate it :)

  7. Reply Amy Christine Parker  () says:

    Thanks for this post, Corinne. It was an honor to get a glimpse into your world. I think it's cool and brave that you decided to write about autism so honestly. I'd love to say something all wise and inciteful here, but I think more than anything I'm just in awe of your determination and spirit. And so proud to count you among my new writer friends!

  8. Reply Corinne Duyvis  (corinneduyvis) says:

    I don't really know how to respond to this! I promise you, there's very little bravery involved in me living my life. In fact, it's quite dull. (Bathrobes make frequent appearances.) But I appreciate your thoughts, and I'm glad it provided some insight :)

  9. Reply @marybaka  () says:

    Beautiful post. Thanks for sharing. Sigh.

  10. Reply Grayson Bray Morris  () says:

    Hear, hear. I can relate to almost everything you wrote about yourself. (I don't have eating issues, unless snarfing chocolate relentlessly is an eating issue.)

    I recently said to my husband, "You know, when things are going well for a while, instead of you saying 'So, things are going well, seems like you've found your equilibrium," I wish you'd say, "Hot damn, honey! You're doing an awesome job of not melting down in the face of stress!" I mean, if I climbed Mount Everest, no one would say, "Oh, great, it must not have been a hard climb. Glad to hear it was easy." Right?

    • Reply Corinne Duyvis  (corinneduyvis) says:

      I think people really underestimate how difficult 'normalcy' can be to achieve for others. A day where I get up at a normal time, leave the house, run errands, and still get writing done is a Really Good Day for me. It's probably a normal day for most, which I envy. Vice versa, because I get so sucked into the world of my books, I'm a very fast drafter, which a lot of people probably envy me for.

      I wish we judged people less by society's average and more by their own abilities.

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