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An Open Letter to Wendy Chung and Everyone Else Who Worries About Autism

(So, it would have been nice if I could have written this for the Autism Positivity flash blog, or Blogging Against Disablism Day. But life doesn’t always work out that neatly, and I only saw the TED talk two days ago and the words to respond didn’t come to me until now. I’m tagging it for those days anyway, even if it is a week late)

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So, for all of you out there wondering what we should “do” about autism, STOP. Just stop right there.

Because you shouldn’t DO anything ABOUT autism– you should do something FOR autistic PEOPLE. And what you should do first and foremost is listen.

They will tell you, in words and text and pictures, that they don’t want to be fixed, don’t need to be cured, and above all, fear being prevented.

Those who struggle to speak have thoughts and feelings and lives every bit as valid as your own. They think things like:

We are not lost.

We are not missing.

We are not a mystery.

We are not broken.

We are not incomplete.

We are not worth less than any other person.

Don’t push us away.

Don’t try to get rid of us.

Don’t try to change who we are.

If you still our hands, you stifle our voices.

If you emprison our eyes, you oppress our hearts.

If you teach us self-hatred, you keep us from our dreams.

If you try to make us just like you, you will lose us twice over, for you will destroy the person we truly are in search of a person we will never be.

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…I had to leave a party today– a calm one– after less than an hour. The sound of Fifteen Voices in one house– talking, laughing– hurt me so much I felt physically ill…

…Earlier in the day, I went to a classical concert, and sketched the images that came to me with the music…

…I wouldn’t know fashionable if it bit me on the ankle…

…I am moved to tears by the beauty of car tailights…

…my hands flicker in joy at the feel of pine needles, of sea-smoothed stones, of velvet and fringes and tinsel and silk…

…I take words too literally, sometimes. I have to ask, often, if someone is joking…

…I seek out foods with interesting textures…

…I collect shiny bits of paper– shiny bits of anything, really…

…I hate shopping malls with a passion. Too much to see, hear, smell, too much, TOO MUCH TOOMUCHTOOMUCH…

…”Weirdo,” they called me in grade school. “Oddball. Freak.” The adults were more polite. “You’re so unique,” they’d say to me, “so interesting“…

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In the video (and many others like it) the doctor describes a nonverbal boy who cries and screams and rocks and flails in frustration, even hitting his head, even hurting himself. Her voice is resonant with shock at the tragedy. Another boy, she says, “shuts down” when he is overwhelmed. Sure, he’s smart, but he struggles with socializing, with Making Eye Contact (the Holy Grail of Western Civilized Behavior). Her voice is rich with sympathy, with pity. She dreams of something to make these boys Normal, to make them Speak and Look and Act like herself and others like her. Maybe, she says, with coaching, the shy, withdrawn, smart boy could even… date! The audience laughs kindly, applauds politely. How nice that would be, they think.

Did the doctor (and so many others like her) ever ask these boys if they want to be normal? Whether or not they are unhappy, and if so, why?

When she talks of searching anxiously for the genes that caused their existence, does she think about how this might make them feel? (How eager we are not to have any more like YOU!)

Perhaps she knows that these boys have strengths and joys, too, but it would never occur to her that their weaknesses and struggles and flaws are every bit as human as her own, every bit as acceptable, every bit as undeserving of shame. Who among us is perfect, after all? Such a person would be truly inhuman.

I have more news for her, and for others like her.

Those people she talks about, those AFFLICTED with autism spectrum disorders… they learn and grow and laugh and love. They go to school, to college– often!– and even to grad school. They hold jobs, many of them. They fall in love, get married, have children. Yes, even those who bang their heads and flap their hands, those who didn’t speak until years after their peers. Delay does not mean inability. Atypicality is not synonymous with failure. Doing things in an unusual order or unfamiliar way doesn’t mean you can’t do them at all.

Those of us who struggle with “normal” socializing — junior high’s freaks and geeks– make deep, solid, long-lasting friendships, often with others like us. Sometimes we oddballs band together and do amazing things. You’ll find us in the chess club, and the theater groups, in musical ensembles and computer programming camps. We hang out with other minorities, with the outcasts and fat kids and bookworms and cripples and queers and those who live between cultures and feel out of place. We find strength in our struggles. We draw insight from our outsider perspective. We are often kindhearted, as we know what it feels like when others are cruel.

And many of us love our lives. Those of us who rock and wail and flee from crowds and dig our nails into our hands until we draw blood… we do not hate ourselves unless you teach us to. Being strange has as many perks and privileges as it does drawbacks. The same sensory sensitivity that makes us cry in the supermarket allows us to hear the music in a single drop of water ringing against a glass. The obsession with detail that makes us line up our pencils Just So and count every crack in the sidewalk can make for brilliant scientists, mathematicians, artists.

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I don’t have an Autism Spectrum Diagnosis. I may or may not qualify for one– I still do not know.

My housemate does have a Diagnosis, and so do the majority of my friends. So do many of the children I work with professionally. I love the kids I work with. They all remind me (a little bit, in various ways) of myself.

I wouldn’t wish for any of us to be any different than we are.

I hope for more people like us in the future.

I hope for a world where we are accepted and loved, where our weaknesses are supported with compassion (not pity), our strengths are encouraged to grow and shine, and our innate value as human beings is never questioned.

Please don’t seek a cure for autism. Seek a cure for ignorance, for misunderstanding, and for intolerance.

Autism is not a disease, it is merely a difference that a minority of people are born with. Help us learn to fly, and watch us soar.