This is My Autism

Written for the This is Autism flashblog taking place today.

TIA-2 copy

I write a lot about the more challenging aspects of being autistic but not today. Today is about the awesomeness that is my autistic brain.

When I read Suzanne Wright’s letter about Autism Speaks’s view of autism, I was shocked and angry. Again and again she used the phrase “This is Autism” in bold letters. Yet the autism she was describing was nothing like the autism I know. I watched the protests unfold across the internet and still those words burned in my mind: This is Autism. Linked to misery and loss, burdens and hopelessness, broken families and broken children.

That’s not my autism and it’s not the autism that I see in the people and families in our community.

What is my autism?

This is my autism: Getting stuck on that phrase and not letting go of it. Getting so stuck that I can’t not think about it. So stuck that I have to act. Perseveration. Obsession. Special interest. I don’t need a national Call to Action. All I need is an idea that I can’t let go of.

This is my autism: Waking up in the middle of the night and creating a flashblog website. Because if my body has decided that we’re done sleeping for the day at 1:45 AM, why not put those extra hours to good use.

This is my autism: Learning to use Blogger, because I’ve always been curious. Reading, researching, problem solving. Forgetting where the new post button is every single time, even though it’s big and orange. Or maybe because it’s big and orange.

This is my autism: Stimming with joy at the first submission, at the enthusiastic signal boosting and the support of our allies, at watching someone type their thoughts into the submission doc, at logging in to find a dozen new submissions, at reading the words of so many people who feel like I do about autism–words that directly counter what Autism Speaks wants the world to think.

This is my autism: Hyperfocusing for hours on scheduling posts. Making a plan. Creating a system. Organizing, organizing. Cutting and pasting, cutting and pasting, cutting and pasting. Making notes and lists. Rewriting the lists. Revising the system. Rewarding myself with a cupcake.

This is my autism: Completely immersing myself in something I love. There are no half measures, no going slow, no wait and see. Once I’m in, I’m all in.

Autism is different for each of us. It’s hard and joyful and confusing and wondrous, just like life. It’s what makes my brain seize onto an idea and race after it, full of excitement, completely engaged.

This flash blog? This is autism.

—–

a/n: Thank you to all of the people who supported the flash blog by contributing, signal boosting, sharing and cheering it on, especially Beth, Heather, Sharon, Alyssa and Leah for their help in organizing and promoting it these past few days.

33 comments

  1. Jana

    Awesome. I hate being unjustly vilified because someone doesn’t understand the way I think. Hello! I’m a person too. I’m not a drain on society and even if I were that doesn’t give someone the right to get rid of me. Sounds like they are the drain on society for being cruel, shortsighted, rude, unjust, unloving, etc. I hope for a more accepting future of different people.

  2. Kmarie

    So I was thinking… Wouldn’t it be great if someone got permission from each contributer and compiled a book for each of us to purchase at cost of making and to circulate out there to family and friends? I would love that. Let me know if it happens!:)

      • Ruth

        I agree. One of the most useful books I read while preparing for childbirth was ‘Women in Labour’, simply a collection of the stories of 40 women and their experiences of childbirth. While you need to know the medical/ practical details, it was reading the individual stories of other women, seeing the whole range of experiences that might be possible, and realising that your own story would be just as unique and individual. Their stories, the challenges they encountered and the things they did to deal with them, went into the toolkit as I ventured out on my own journey, knowing it would be uniquely mine, by design.
        Thank you for the flash blog, I think it was a phenomenal way to respond to the avalanche of emotions brought out by the op.ed. I am a long time reader of your blog coming out of the lurking closet, but I find so much in your writing, but also in how you interact with readers, that is insightful and helpful. Thank you.

        • musingsofanaspie

          I bet that book was far less scary than “What to Expect when You’re Expecting.” :-) Reading individual people’s experiences can humanize a topic by showing us that each person’s experience is unique and while one person might experience A and B, another might experience B and C and not everyone experiences A, B, C and D all the time. And that each person copies in their own way with varying outcomes.

          Thank you for delurking to share your thoughts and for the kind words. It’s always great to hear from someone who has been quietly reading and enjoying the blog.

          • Ruth

            Yes far less scary, well a little bit of scary but a lot of empowering. The sharing of stories gives an awareness of what might be, without the imposition of what should or shouldn’t, and leaves it to the reader to draw out of the stories what resonates, or to file the knowledge away for future reference. Different is not wrong. ‘Text book’ is often narrow and limiting, individual stories can be totally open ended and freeing. And sometimes is just to know you are not alone.

  3. aspieminister

    Thank you SO MUCH for telling us about the “This Is Autism” flash blog. I am so helped and encouraged by your posts — and your book — that I decided to start my own blog on “This Is Autism Day.” It is Aspieminister.com where I try to sort out my recent diagnosis with my years of professional ministry.

  4. deb wearn

    Just hope you give thought to those of us aspies who have no voice. can’t afford the technology you have. barely able to pay the rent. Rejected/not accepted by family. unable to make friends or other supports. rejected by employers. multi degree quals to answer phone, type and file. low pay. survived this long by aspie abilities but not a happy life. hope you appreciate the support you have

    • musingsofanaspie

      This is never far from my mind, honestly. I am incredibly grateful for the support I have and very much aware that I’m privileged. Having support makes life less difficult. It also enables me to advocate for change in the hope that eventually autistic adults won’t have to feel alone or hopeless. There is tremendous need for adults supports and so few people are able to access them. It’s frustrating to see and often I feel like I’m a lucky break away from being in a similar situation. I have no idea whether the kind of social change we need is even possible, but I like to hope that it is and that some day it will be a reality.

      I’m sorry you’ve had such a difficult experience. I know that there are many others who have similar experiences and I try to be sensitive to that.

    • autisticook

      I’m so grateful that you took an effort to remind us all of that. Like Musings said, I often feel like I’m only a very lucky break away from being in your situation too. And I am privileged. I’m white, I have my high school diploma, I’m cisgendered, I come from a middle class family. And yet I also know that I’m only a short step away from losing everything, because of the challenges you mention. I’ve just lost my 14th job in 12 years. I’m on unemployment, which is barely enough to pay my mortgage and bills. It’s scary. But at least I have support.

  5. Tony

    Excellent post. It reminds me of big decisions I made in childhood and teen years which depended on my depending on my “autism” to make it through. I mostly educated myself. In the end, it got me into Yale. And I’m ok today, years later. Without it, I’d have been less.

  6. Pingback: In the News – November 2013 | The PsychoJenic Archives

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