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Restless Hands: Acceptance, Love, and Self-care #AutismPositivity2015

By Aiyana Bailin

Scattered memories:

…He meets me at the door, eyes wide. Takes my hand, looks into my face intently, bounces up and down in place. I give him my biggest smile and squeeze his hand. “I’m happy to see you, too” I tell him. Later, I read to him, ASAN’s “Welcome To The Autistic Community (Adolescent).” He doesn’t usually want me to read to him for very long, but this time he doesn’t interrupt me at all…

His flapping hands and bouncing feet are so beautiful to me.

…Another day, another child. I spend the afternoon pushing him on a rope swing in the backyard– around and around he goes, shrieking with happy laughter. Then he gets down, gestures emphatically. “You want me to get on the swing?” Nods. I try to refuse– I’m too big, too old. He is firm. He wants to share, to give me a turn me to experience what he did. I get on the swing and he pushes me, intent on his task. I smile, I laugh, I get dizzy. He laughs with me. I thank him for his insistence that I try….

His solemn demeanor and meticulous nonverbal instructions are so beautiful to me.

…Yet another day, another child. “You want to leave already? I don’t know what’s wrong!” says a mother as her son tugs her towards the door of the arcade room, “I thought he liked it here!” I am surprised– she doesn’t see what I see. “He does like it here,” I explain “But he’s feeling a little overwhelmed and needs to be somewhere quiet for a few minutes.” I lead him to an unused room. He lies on the floor, cool linoleum under his hands, gazing out the window through dark lashes. I sit beside him quietly until I see the tension leave his body. I stand, offer him a hand. “You ready to go back in?” After a moment, he takes my hand, gets up, and we walk back into the arcade together…

His hummed tunes and verbal sound effects are so beautiful to me.

…And yet another. It’s her birthday and I sit next to her on a large trampoline while small children clamber all over me. She bites a stuffed animal happily on the nose. The younger girls do tricks, reminding each other to be careful around her– she’s bigger than they are, and much clumsier, prone to unexpected movements. Indoors, I catch her hand heading for a bowl of dip. I help her sit, feed her bites of chips and dip. She grabs for a strawberry daiquiri that one of the parents is drinking. I laugh and ask her mom to fix her up a non-alcoholic version. Gluten-free brownies stand in for chocolate cake. We all sing happy birthday and she claps her hands…

Her happy shrieks and shaky hands are so beautiful to me.

Every one of these kids is nonverbal and considered “seriously” disabled. I consider myself profoundly lucky to have them in my life. And I will speak up for them, for their needs and rights and desires… because, while I am not and have never been “seriously” disabled, I know what it’s like to /need/ a few minutes away from the sound of other humans… To make a sound over and over just for the fun of it… To express excitement with my body instead of my voice… To have to fight my own body sometimes…

We all have the right to learn in a way that makes sense to us, to live in an environment that doesn’t hurt us, to be part of a society that accepts the things we need in order to be safe and healthy and happy and whole. We deserve to be ourselves, our whole selves, and to be accepted for it even when we are not understood. We deserve to be loved for our quirks, not in spite of them. There will always be problematic systems and problematic people in our lives. But my greatest wish for every autistic person is that at least one person close to you, in your life, appreciates how wonderful you are, exactly the way you are.

Because flapping hands are beautiful. And nonverbal communication is beautiful. And sensory obsessions are beautiful. And trying your best is beautiful. And enjoying yourself in ways others don’t understand is beautiful. And sharing those experiences with others is beautiful. Quirks and tics and routines are beautiful. And so are all of you.

Original Post: https://restlesshands42.wordpress.com/2015/05/15/restless-hands-acceptance-love-and-self-care-autismpositivity2015/

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Restless Hands: What Autism Means To Me #AutismPositivity2013

This post was originally published on Restless Hands, at http://restlesshands42.wordpress.com/2013/04/30/restlesshands42-celebrates-1000-ausome-things-autismpositivity2013/and is reprinted here with permission from the author.


It’s been a rough week so far, and I’m tired, so this will be short.

Autism has brought so much positivity into my life. I still don’t know if I qualify for a “formal” autism diagnosis, but it doesn’t really matter. The autistic community has accepted me, and supported me, and helped me to understand myself, and now I no longer feel isolated for my scattered handful of mental functioning deficits, and that is enough.

Autism has given me friends, and new hobbies, and new ways of thinking about myself, and of thinking about others, and thinking about thinking, and about education, and about human rights and dignity and intelligence.

A few days ago, I saw a screening of the documentary “Wretches and Jabberers,” the story of two men who grew up without any codified means of communication and then, as adults, traveled the world teaching others about autism and about the fact that intelligence does not require speech.

And I cried at the times in the film where I could understand the body language and needs of these men and their own aides did not.

And my dear friend and housemate flapped zir hands with me at the wonderful parts.

And zir boyfriend laughed with the two of us at some of the ridiculously clueless comments that a few allistic (non-autistic) audience members made afterward, and the three of us cheered for the two autistic young men who volunteered to come up to the microphone and tell the whole audience that they liked the film.

Autism means many different things to different people, including people on the spectrum and their families. I know that for many people, being autistic has involved a lot of pain and suffering and stigma and struggle.

I will continue to fight for a world in which being autistic does not have to involve any more pain or suffering or stigma than not being autistic.

Because to me autism means, and will always mean: laughter with happy flaps, and the fun of pointing out patterns and oddities to each other, and rocking while brainstorming about disability rights, and geeky jokes, and people who squee in joy with me at rainbow colors and the unexpected beauty of under-appreciated things like math, and science, and solitude.

To me, that is autism.

And I hope they never find a cure.

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Restless Hands to “I Wish I didn’t have Asperger’s”: My Spectrum of Friends #AutismPositivity2012

This post was originally published at http://restlesshands42.wordpress.com/2012/04/30/my-spectrum-of-friends/ and is reprinted here with permission from the author.


My Spectrum of Friends

This post is part of the Autism Positivity Day #AutismPositiity2012 Flash Blog for April 30th, 2012. For more information about the flash blog, and the Autism Positivity Project, and a compilation of many other fantastic posts, please visit autismpositivity.wordpress.com – Thanks!

To “I Wish I Didn’t Have Aspergers”

Dear Person Who Has Aspergers,

I don’t know who you are or how old you are or why you wish you didn’t have Aspergers… but I’d like to reassure you that there are people in the world who will love you exactly the way you are– not “in spite of” your Aspergers diagnosis, but because you are who you are, Aspergers included.

Since I don’t know much about you, I’ll tell you a little bit about me, and about the people I know who have the same diagnosis you do.

When I start talking about autism, people ask if I “work with autistic children.” It’s a reasonable assumption– I’m a Psychology student at a major research university, and there are a lot of people here who work in the autism field.

I don’t. I’ve only ever met 2 autistic children, and that’s back when I was a kid myself.

But when I was in the 7th grade, an autistic girl who was 6 years older than me saw that I was alone and scared at my new school, and sat with me at lunch, and introduced me to the field of Theater Tech, and laughed with me about geeky jokes. Now she’s a pediatrician who works with autistic kids, and we’re still really good friends.

When I was a teenager, I met a distant cousin of mine who has Aspergers at a family gathering, and discovered that we both love Star Trek. I also got kinda overwhelmed with how much he talked to me, because I didn’t realize back then that I have some sensory processing issues myself, especially when a lot of people are talking to me at once. I wish I’d known then how to tell him that I really liked him anyway and I wish we’d had a chance to talk more.

When I went to college the first time, my first serious boyfriend was a guy who had Aspergers and also ADHD. It was hard for me to keep up with his amount of energy, but we always had fun.

Now I’m in college again, and there’s a group I hang out with about once a week. We get together, play board games and card games, watch funny youtube videos, generally goof around, whatever. For a moment, I’d like to talk about three friends of mine who regularly attend these gatherings. Well, two good friends and one acquaintance, really. And there’s another good friend who belongs in this conversation, who doesn’t come to these get-togethers, but sometimes joins in if we’re having a quieter night in at my place.

They’re all nice people. All are a bit geeky– nearly all my friends are. But they’ve got something else in common, too. Two are Autistic, one has Asperger’s, and one was diagnosed with PDD-NOS, which is pretty close to being an autism spectrum diagnosis. (There’s actually a fifth good friend I’d like to add, but I don’t know if he has an autism spectrum diagnosis or not– but I’d be willing to bet good money that he’s not neurotypical.)

One speaks quietly, in a somewhat slurred voice, which makes it difficult for me to understand him when there are other conversations going on in the background. But he never seems to mind repeating himself when I ask him to.

Another is boisterously energetic and generally loud enough to be heard from the next room. Sometimes I have to ask him to “turn down the volume” when we’re talking, because otherwise it overwhelms me a bit.

A third is generally quiet in large groups, but has amazing things to say in more intimate conversation with only one or two other people.

The fourth, due to our schedules, I communicate with mainly by email and instant messaging– which she kinda prefers to spoken conversation anyway.

The third mentioned to me recently that speaking is not her favorite way to communicate either– which surprised me, because she’s so extraordinarily eloquent. Talking with her, I forget that I’m talking to a college student (and one a decade younger than myself, at that!) rather than a professor discussing her area of research. Heck, I’ve had professors who couldn’t express themselves as clearly.

All have good senses of humor. All are very caring people. I consider myself lucky to have them as friends.

Two are undergraduates, two grad students. They study computer science, math, oceanography, and cognitive science. At least one also holds a job. At least one teaches classes regularly.

One is restless and listens to low-key music to help himself stay calm. One warned me that her playlists were liable to give me “mental whiplash” from the sheer variety. One wears dark glasses inside to mitigate the effects of the fluorescent lighting that gives her a headache.

One is a passionate performance artist. Two are amazing writers on the subject of disability rights. One always wears long sleeves, and has a fairly limited wardrobe because so many clothes are uncomfortable. Two love trying new foods. Three are avid readers– and at least one even reads more than I do, which is saying something. The fourth prefers audiobooks. I’m pretty sure they all like “Doctor Who.” But then– who doesn’t?

So no, I don’t “work with autistic children.” I share my life with autistic people and people with Aspergers. They are my friends, mentors, lovers, pen-pals. I have laughed with them, stayed up all night talking with them, held them when they cried, and cried on their shoulders in return. I’ve had adventures with them, learned many things from them, and taught them things in return.

And I wouldn’t want any of them to be any different. I love them all just the way they are. And you will meet people who love you just the way you are, too. I promise.

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