When my son first started occupational therapy, at about age two, one of the first things the therapist noticed was the flapping. “It’s a thing,” she said. “It’s age-appropriate right now, but if he keeps doing it, it’s not typical.”
I didn’t know what she meant by a thing. I shrugged it off. Our Little Dude’s happy flapping was adorable. He slapped his palms against his thighs whenever he was really happy or excited. His older sisters affectionately called him Flappy Bob, after a character in Fairly Odd Parents. Happy-flappy, we called it. It was so obviously an expression of happiness.
Later, when a new pediatrician asked if Little Dude had ever been evaluated for Asperger Syndrome, I found out what the occupational therapist meant by “it’s a thing.” Hand-flapping, and other repetitive hand motions, are hallmarks of Asperger Syndrome. I still failed to see what the big deal was about hand flapping. By this point, Little Dude no longer slapped his hands against his thighs, so it wasn’t even noisy or distracting, usually.
When he started in a special needs preschool, the hand flapping was, once again, a thing. I was told that it wasn’t encouraged. I said that we had bigger issues to worry about than flapping.
But, seeing Little Dude in a classroom, I wondered, how else is this going to be a thing? Sure, we think it’s adorable. We know he’s expressing happiness. But how is it going to go when he’s in third grade and still flapping? Is this exactly the kind of adorable thing that boys get beat up over?
We still let it go, but nagging doubts persisted.
Little Dude started Kindergarten. His teachers said that he sometimes flaps, but none of the other kids seemed to notice it. Kindergartners are awesome that way. But still, I worried. Little Dude is amazing, brilliant, kind, sensitive. He also struggles with social cues, is easily frustrated, cries at school. He’s ripe for bullying. I am the mother bear; I want to protect him in every way possible.
However, flapping is part of who he is, and how he communicates. Little Dude’s hand-flapping ranges from a fairly subtle hand motion, to a full-bodied flight simulation.
At some point during all this worrying, I came across a blog post by Julia Bascom that pretty much erased my concerns. Julia’s post, Quiet Hands, tells of her experiences in being forced to stop flapping. Her hands were held down in tacky glue to make her stop. She was told that behavior is not communication.
Reading it, I realized that whatever comes my son’s way, allowing him to express himself in his own way is far, far better than trying to mold him into something he is not. I’d rather deal with bullying down the road — or better yet, help educate his class so that it doesn’t happen in the first place — than try to stop the flapping.
And I have to wonder, in what way is flapping not communication? We all talk with our hands. We raise our hands to be called on, we rock a peace sign, we give the thumbs-up, we flip the bird. Recently I used my post Ten Things I Wish Your Kids Knew About Autism as the basis for an autism acceptance project with my 9-year-old’s Brownie troop. The girls in our troop are aged 8 to 10. They all totally got it. We jumped and flapped, and felt how good our muscles felt when we did it.
The Quiet Hands post sparked The Loud Hands Project, done in conjunction with the Autistic Self Advocacy Network (ASAN). The project led to an incredibly comprehensive, wide-ranging anthology of essays by autistic people, Loud Hands: Autistic People, Speaking. I think it’s incredibly important for those of us who are non-autistic to listen to all the ways autistic people communicate, and this book is a great place to start doing that. If you love someone with autism, if you teach people with autism, if you work with people with autism, or if you simply want to understand more about the range of human experience, you should read this book. Beyond all that, the writing is top-notch.
I was fortunate enough to have an email discussion with Julia Bascom recently about the Loud Hands Project. Rather than try to edit it down, I think it’s better to let it stand in its entirety, below.
Joslyn: What was the inspiration for Loud Hands?
Julia: The Loud Hands Project was the convergence of several different ideas I’d been playing with over the last several years—though I’m hardly the first to think about civil rights in terms of narrative, resilience, and voice. Things started to come together over the summer of 2011, when Melanie Yergeau and I prepared and gave a presentation of Autistic culture for the University of New Hampshire’s Institute on Disability Autism Summer Institute. I started talking to Ari Ne’eman, then, about a project centered around archiving, sharing, and celebrating Autistic culture. I’d often wished for a centralized, easily navigable guide and introduction to our community and our history. It seemed like an important step in building resilience and pride and nurturing our voices.
All of this got a jump-start when my essay Quiet Hands—about the abuse and silencing of autistic people—went viral. That gave us the momentum we needed to unveil the project and start fundraising. The anthology, Loud Hands: Autistic People, Speaking, was the first physical product of the Loud Hands Project, and it took a little over a year to make. We’re putting the last finishing touches on our website now, and there’s more in the pipeline. Autistic people have said a lot, and we’re only just getting started.
Joslyn: What kind of diversity is represented by the contributing writers?
Julia: I’m so glad you asked! We have a wide range of authors: women, men, and people who are neither; writers who were teenagers when they composed their pieces and writers with teenagers of their own; people who speak orally and people who type to communicate, etc. Our contributors have a variety of educational backgrounds, life experiences, and, in some cases, disabilities besides autism. We didn’t include biographies with each piece, because their work really stands on its own, but I would caution readers not to assume that the writers are from a homogeneous group simply
because their writing is of a uniformly stellar quality.
Joslyn: Like a lot of other readers, I first found Just Stimming when your incredibly powerful post, Quiet Hands, went viral. That post really validated the idea that my kids’ flapping was simply a way of expressing themselves (which, ironically, was the actual thing we were “supposed” to be working on).
I think what most parents worry about is that other kids will make fun of their kids for flapping (or their other stims, or their echolalia, etc.). Do you have any advice or words of wisdom for parents on that?
Julia: The solution to bullying is not to punish the victim. The problem doesn’t lie with the kid flapping, but with the other children making fun of them for being different—and that is caused by a world that fears and stigmatizes difference. Change the root cause. Cultural attitudes towards difference can and do change, but not if no one ever challenges them. Acceptance starts with us.
So, educate your child’s peers and classmates about autism. Model acceptance. Combat stereotypes and stigma. Kids will surprise you; you just need to set the tone. And when something goes wrong, call it what it is—intolerance, ignorance, or bullying—and stand up for your child the way you would if they were a neurotypical child being bullied. But please, trust me—living in fear is no life at all.
Joslyn: When we talk about accepting autism–and in fact, celebrating those differences–that work needs to be done not just at home, but in the classroom. I know you had some terrible classroom experiences as a girl. Besides the obvious (stop gluing children’s hands down), do you have any thoughts or suggestions for classroom teachers (especially mainstream/inclusive classroom teachers) about how to foster not just a tolerance, but a celebration of neurodiversity?
Julia: Oh wow—that’s the kind of question that deserves a whole book of answers! In fact, I’m pretty sure there are books out there devoted to this—Paula Kluth, for example, has done some groundbreaking work, and Thomas Armstrong. Beyond that, I think the answer is similar to the one I gave above—the teacher sets the tone. In the best classrooms I’ve been in, as a student or otherwise, the teachers have a) believed that every student has a right to be in their class, b) believed that every child has strengths and gifts and something to offer, c) recognized that every student has different needs, and d) focused on creating a classroom that is a community. And then they’ve actively worked to transmit these beliefs to their students: they’ve modeled acceptance, they’ve talked as a class about how everyone has different needs and abilities and brains and gifts, and students are equipped with strategies to get the most out of their day and are encouraged to support and celebrate both themselves and each other. But I don’t know that it’s simple enough to boil down to “do this, don’t do that,” in a paragraph or two. Good classrooms are works of art.
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Many thanks to Julia Bascom for her time and thoughtful answers. You can purchase Loud Hands, Autistic People Speaking in paperback or for Kindle from Amazon. You can also watch a video about the Loud Hands Project below!
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