Sunday, August 8, 2010

About Stimming

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.


  1. This is a really good blog post. Thank you for writing it. I look forward to reading your future posts.

  2. Thanks for reading! I appreciate it.

  3. Thanks for writing this Zoe... I feel like every little insight into how you see the world and the issues you face broadens MY understanding of the world. So thank you!! Eager for more. :)

  4. Wonderful post and enjoyable blog in general. I suggested that my son read your entry about the flow chart (great idea, b/t/w), and then we just kept reading.

    This entry really resonates, as his teachers have been working so hard to get him to stop stimming or doing the OCD behaviors that help reduce his anxiety, and that has made him even more anxious. It's a bit of a catch 22. We're still trying to find something acceptable that will help reduce the anxiety. He doesn't like to use stress balls, but perhaps now that he has read that you use them, he'll be more open to that option.

    Thanks for the insight! I hope to read more about your struggles and successes. I find it very helpful and I think he does too.

  5. Zoe, I hope you don't mind hearing from me again. I am just so drawn to your blog. I want to help my son and be supportive of him. I never want to make him feel bad. How can I teach him how to stim properly, by that I mean to still "fit in" but also to still feel good. I'm so confused. You seem like you really have great insight and information. If you can give me any guidance I'd love it.

    Or tell me to leave you alone if I'm driving you nuts. Thanks.

  6. Hi Maryann! No, you're not driving me nuts, and I'm happy to offer advice. Will you see it if I comment here as opposed to going back to your blog? Let's see.

    Since I wrote this, I've been trying to figure out a different model for dealing with stimming in autistic kids. Ideally, the solution is to change society so that all kinds of movement are acceptable, but we're obviously not there yet. In the meantime, I wonder whether the best thing to do is just to give kids information and let them make their own choices.

    So, instead of just telling your son "Never do [insert stimming behavior here]," maybe you could tell him:

    "It's important to know that if you do that in front of other kids your age, they might feel scared because they haven't seen people do that before. And if they're mean, they might make fun of you. But you'll always be allowed to stim in the house, and we will never make fun of you."

    Then he wouldn't be ignorant of the possible consequences of stimming in public. But if the urge is strong and/or he doesn't care what other kids think, he could still choose to do it without feeling like he was disobeying or disappointing his parents. Does that make sense?

  7. Thanks! I'm going to talk to him about this.

  8. Hi, I've just discovered the word "stimming" and I'm wondering about its relevance / importance to kids with ADD / ADHD? Could you give me any guidance?