Just Stimming…

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

Response

with 20 comments

When I was a little girl, I was scared.

That sentence has taken two months to write.

When I was a little girl, I was scared.

When I was a little girl, I was a lot of things. I was functionally blind, and other kids teased me about my huge, staring eyes. When I was a little girl, I was somber. When I was a little girl, I was remote. When I was a little girl, I was devout.

When I was a little girl, I was scared, and I was alone.

*****

I don’t know how to tell you about growing up scared and alone, except that I don’t want to, and maybe that says enough. I can tell you, though, what changed. What changed is that I was fifteen, and I found this.

I was fifteen, and I spent months circling Amanda Baggs’ site, skimming the front page (the background and url were different then,) afraid to click on any of the posts, testing and tasting the words autism and autistic and okay over and over in my mouth. I had found someone like me. I had found someone like me, and they were fine.

It was months before I could look at this straight on, accept it, and click a post to read. Eventually I was brave.

When I was fifteen, I stopped being alone.

When I was fifteen, I stopped being alone, and that meant I could stop being scared.

*****

A little more than a month after I wrote Quiet Hands, I woke up and found that the number of hits on this site had erupted. Quiet Hands had gone viral, and there were a dozen comments waiting in moderation, links all over facebook, emails. I was bewildered–it was a stupid, personal post I’d written in the middle of the night to process a flashback a terrible character on a wonderful show had triggered–and overwhelmed by the attention. My friends can attest to my state that week–head-banging, bewildered William Schuester did something good by accident, obsessively relaying the ever-increasing hit-count as my words died out. I told one of them:

The irony in writing about what I write about is that you write about not-existing, and then you very suddenly exist.

I’m not so good at handling that.

But as I adjusted, as I pieced together the history of what happened and approved comments and somehow, strangely, kept existing, I started being able to read what people were saying. I started getting emails from parents who wanted me to know that they’d brought the piece into IEP meetings and had it written into the IEP that their child would be allowed to stim and move, from parents who’d talked to their child and asked if this had happened to them, told them to come and tell if it ever did, from teachers who’d thrown away their Quiet Hands posters.

I get a couple of these a week, now, and I’ve never been able to respond because I cry every time I read them.

*****

When I was a little girl, I wanted more than anything for someone to tell the loud, looming people to stop.

*****

(No one ever did.)

*****

There’s another class of responses I’ve gotten. Autistic people, writing in. Sometimes only a word, a word scraped out and bled through with meaning I understand and never will be able not to.

Yes.

*****

Thank you. 

In my school, it was “sit on your hands.”

You remind me I’m a person.

I feel a little less alone.

******

I see another little girl, flapping in the pharmacy.

Raising my arms comes a little easier, every time.

Written by Julia

December 13, 2011 at 3:57 pm

Posted in advocacy, personal

20 Responses

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  1. my cries. ;_;

    It’s both wonderful that you’ve gotten the response you have. . . and horrible that it’s such a shock or wake up call to non-Autistics who are responding, or so damn familiar to the Autistics who have done so.

    (I had checked the “notify me of follow-up Comments via email” box, and I cried a couple of times reading them, too.)

    Savannah Logsdon-Breakstone

    December 13, 2011 at 4:06 pm

  2. You are not alone anymore.
    My little girl is 10 years old. She is unable to talk. She has huge problems with sensory integration. She has mild cerebral palsy. She has seizures, and other medical issues. She still wears diapers. She is unaware of danger: hot stoves, cars, fire, unfamiliar dogs.
    She is determined, inquisitive, funny.
    She requires a lot of care and supervision.
    She is extremely motivated. She likes to do things her way, on her time line, making her own decisions. Who doesn’t?
    I am one worn out mom. Thank you for sharing. I wish my daughter could share more with me. I wish I knew what it is like to be her.

  3. […] Response appears here by permission. […]

    Response | Neurodiversity

    December 14, 2011 at 1:02 am

  4. Your “language” is the language of the future. More and more are ‘speaking’ it and we have to teach more how to ‘translate’ it. It is a pure language, not of words but of the brain. Few understand it, but it is becoming increasingly necessary to learn it. The problem, who will teach it and how? And will they ‘teach’ it in schools, where younger children are and can learn new languages faster? Who will teach and who will will learn? We all must!

    Marla Wise Miller

    December 14, 2011 at 1:06 pm

  5. Thanks for reminding me there’s a point to what I do. (For the second time recently.)

    I can still remember when stuff I wrote started going viral. I didn’t understand it. I’d been writing all along, for years, and suddenly lots of the world was staring at me. 

    I hated it. People kept telling me “Why do you write and make videos and then expect people not to watch?”  What I’d expected was for people to pay attention to my point and not to me as a person.  It didn’t work that way. If I’d been able to justify to myself saying no to the media I would have instantly. 

    (I now can more than justify it unless other people’s safety is on the line:  At first I’d said yes after people pointed out the media could help get various ideas out that could help people.  But the media had its own agenda:  Putting my warm body into a story that I knew and they knew was not mine, and leaving me to deal with the fallout, terrified to object.  The worst was when they asked why I made In My Language. I told them it was for a girl with CP whose parents were sterilizing her and cutting her breasts off, and everyone and their dog was justifying it because she supposedly had no language or cognition.  They never broadcast that, instead saying I did it to show people my autistic world.)

    But I’ve been told there’s two ways to screw up with things like this. There’s seeking attention (media or otherwise) for its own sake. Then there’s hiding from it even when it would do something good for the world.  Both are rooted in the ego, they’re just in opposite directions.  And I definitely tend more toward the cowardice of the second option than the pride of the first. 

    All of which is to say… I know attention can get really scary really fast, but I also know that running from it when it’s necessary to get the word out is just as bad as running towards it for all the wrong reasons.  I’ve done it and it doesn’t work.  So try not to be afraid to do the right thing — whatever it happens to be, and whatever happens. Maybe you already know all this, but I didn’t when my stuff started going viral so I thought I’d say something. 

    Amanda

    December 15, 2011 at 10:22 am

  6. When I was 28, I stopped being alone.

    chavisory

    December 15, 2011 at 11:31 pm

  7. I don’t know what to say, except to say something.

    I’m glad you aren’t alone. And I am glad you are less scared (unscared? My comprehension sucks sometimes).

    Thank you for writing. And for existing. And for helping the next generations hands be loud.

    Kassiane (@UVGKassi)

    December 16, 2011 at 2:58 am

  8. Thank you

    Rachelle Le Blanc Manios

    December 18, 2011 at 1:42 am

  9. for my autistic daughter, who is nearly nine, i thank you. i have done and will continue to do everything in my power to let her know that she is not alone, but i don’t live what she does. it is people like you who will be there – who i thank god *are* there – to light the way for her. i can tell her until i’m blue in the face that she is perfect – that she IS. NOT. BROKEN, that she needs help, not fundamental change. but it is you who can *show* her all that simply by being here. thank you. from the bottom of my heart, thank you.

    jess

    December 19, 2011 at 4:53 am

  10. […] Response […]

  11. What. a beautiful post. Thank you for all you have taught me. 🙂 I’m glad you don’t feel alone and that you’re feeling less alone and more positive. And I think it’s amazing how you’re helping people worldwide.

  12. You are very brave. Please read Andrew’s post on our blog titled, “In the Aspie Closet”.

    Autistics Aware

    December 21, 2011 at 8:05 pm

  13. Well done for writing it.

    sanabituranima

    December 27, 2011 at 4:14 pm

  14. Thank you. For feeling the fear and doing it anyway. For blazing a trail so that others might not have to fight quite as hard or if they do at least will know that they are not alone. Thank you for writing so that your voice can be heard. Because your opinions matter. Because our world is a better place because of you. My daughter, my beautiful Emma cannot articulate as you have here. But she is no less of an inspiration, a joy, a being of beauty.

    arianezurcher

    March 2, 2012 at 9:26 am

  15. I am alone. My psychiatrist and I, at one time, for a very long time, thought I was autistic. Then, I started remembering. So, no….

    I’m part of a movement I technically have no connection to, and… I fear rejection. A long time, I blogged and wrote as though I were on the spectrum… Didn’t really know better. Now I fear the backlash of my honesty and my ignorance.

    I’ll probably have people say, “Why are you still involved? We don’t want you.” I can’t stop defending. I stay true to the causes to which I dedicate myself.

    You’re what I wanted to be–what one of my teachers called me–a superhero, with your writing. I’d really like to continue my defenses of pro-neurodiversity autistics…. But you’re what I wanted to be. A super person for the Autism world. Good going.

    Transica Hester

    April 17, 2012 at 2:58 pm

    • I’m curious about what you could’ve remembered that would invalidate a determination of autism? I know it’s none of my business, but…yeah.

      chavisory

      October 18, 2012 at 7:09 pm

      • He didn’t know my history. I didn’t remember my history. I barely remember my history. However, I remember measuring my friends’ reactions exactly to produce the greatest possible emotional response. Definitely not a typical person’s way, but it partially required the details of their non verbal communication to work. If I remember this, then it would have taken skills that… well, seem to contradict what my doctor said. I remember this. I had major difficulties with remembering before.

        I don’t think I’ll ever lose the urge to love and protect the neurodiverse community, in general. That’s not the way I work. But I hope that some of my love is returned to me. It wouldn’t be a joy to defend as it has been, if no one wanted me. I’m entrenched with y’all. It’s either this stance, or no stance. I won’t take another perspective– but being wanted’s nice.

        Transica Hester

        October 19, 2012 at 7:59 am

        • So…I’m not a psychologist. But what you describe sounds a lot like things I have read other autistic girls describe in terms of having found that they could learn by rote or by trial and error, rather than instinct, to read and use other people’s non-verbal communication. That, and a whole lot of professionals still believe things about us that aren’t true, or vastly overgeneralize about certain skills being unobtainable to us, when sometimes we just have to learn them in a totally different way than most people do. And because the “spectrum” is really multi-dimensional in terms of language/communication/emotional/sensory/information processing/developmental challenges, and not just two-dimensional, not every autistic person is going to show every single “symptom.” Some of us have challenges across the board, and some are very lopsided in our disabilities. I’ve known autistic people who are *extremely* emotionally intelligent and even manipulative. It would be uncommon, but not necessarily mutually exclusive with autism.

          Whatever, though–I at least am always appreciative of people who are on the side of the neurodiverse community.

          chavisory

          October 20, 2012 at 1:17 pm

  16. I’ve been rereading your blog again (Since I started reading it back at one of the letters to the parents about why we call ourselves autistic, I’ve been rereading it every few months…I’ve found not only do I like it, its one of the ways that best help me write and communicate my ideas)

    And this time through I just have to comment, I actually created a wordpress account to comment.

    I didn’t handflap as a kid. My stims growing up were ones that could pass much easier. I’ve started handflapping as an adult, and every time I read about someone being stim-supressed, I handflap automatically. Every time I hear Quiet Hands, I handflap automatically. It’s not a conscious response, I just… I can’t deal with it, and I need to tell people no, that it is okay.

    And in those times I can’t find the words, and the only thing I have is my hands. So I do it for them.

    You are fighting it, you are making it better for others. The school I’m at (I volunteer at a school for autistic children), doesn’t do any Quiet Hands. Schools are learning. And people like you are making a huge difference.

    If I hadn’t known how much it hurt others, this wouldn’t be an area that I’d react to. Your post was the most informative of any in that area. And now, I can make sure none of the people around me have that happen to them. And if they act like they do. I will flap for them, because our stimming isn’t scary, we’re just communicating in ways they don’t know.

    And this is because you taught me how to help them.

    tuttleturtle

    November 7, 2013 at 4:48 pm

  17. I know these posts are years old, but my daughter is 4 and was diagnosed this summer. And blogs like yours are part of a sea-change in how autism is viewed, at least where I am, so that I am able to say things like “My daughter was diagnosed with autism this summer, and it was the best day of my life,” and “I’m sorry, but she said no, I need you to step back from her now,” and to laugh and smile when she flaps so hard that I think she might fly up into the sky.

    My daughter is beautiful, and you have helped me to see her that way.

    Thank you.❤

    K Croto

    September 28, 2015 at 7:20 pm


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