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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.

It’s Blogging Against Disableism Day!

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Thanks to Dr. Nightengale of Samarkand for reminding me. I didn’t think of a specific post for today, but in a way, every time I write a post on this blog, it’s an instance of blogging against disableism. I also have in mind a post or series of posts I wanted to write today anyway, whose topic(s) dovetail nicely with today’s idea. Without further ado, I’ll get to work on those. Hope you’ll take that journey with me!

A Few Words on Language

One of my fellow students  has talked to me about his desire to help reduce stigma against autism and autistic people.  The stigma is, unfortunately, inherent in the language that is commonly used to describe autism (and autistic people).  Doctors, therapists, and the general public do this to nearly all people with disabilities– and we hate it.  Much of it is subtle, and takes an effort to become aware of.  Here are the examples that come immediately to mind:

Any time you talk about children being “at risk,” or call autism an “epidemic,” you reinforce the notion that autism should be feared.  When you say that someone “suffers from,” “struggles with,” or “is afflicted with” autism, you make autism a dirty word.  When you talk about someone “recovering from” or “overcoming” autism, you imply that autism is a disease, and also that being autistic is not good enough and that anyone who is autistic (no matter how happy they are) needs to change.  When you refer to a child by their functioning label, you dehumanize them, reduce them to a statistic, and indicate that their value as a human being depends on a single measure (their IQ, which was probably measured incorrectly if they are profoundly autistic).

Instead: say that a child is autistic the same way you’d say they are introverted, or tall for their age, or allergic to milk– without a value judgement attached.  Better yet, describe them in terms of their individual strengths, weaknesses, skills and sensitivities.  Talk about teaching them coping skills like meditation and biofeedback to help decrease their stress levels, or about them developing alternative means of communication such as text or sign language, or talk about getting them the supports and services that allow them reach their potential and have fulfilling lives.  Talk about what environments work best for them, and arrange their lives to meet those needs as much as possible.  Measure their successes in terms of their happiness rather than their conformity to behavioral and social norms.

Please don’t ever refer to an autistic person as “broken,” “missing/lacking” certain human qualities, “deficient,” or “defective.” As Lydia (“Autistic Hoya”) writes, “Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities.”  This should be a statement of fact, not a basis for deciding someone’s worth or quality of life.  Many birds are disabled in the water.  Almost all fish are disabled in the air.  A dog is disabled at climbing trees.  A cat isn’t healthier or better for being trained to eat dog food and walk on a leash.  Yet this is what we do with autistic children.  We train them to behave like children whose minds and senses work unlike theirs– and call it an improvement, even with numerous autistic adults saying that their lives are better since they stopped trying to fake being normal.

And please don’t call autism “devastating” or “heartbreaking.”  A parent may be devastated when they discover that their child is homosexual, or plans to be an artist instead of a doctor, or is marrying someone of another ethnic group.  In all these cases, I think we understand that the parent needs to realize that their child is not a possession to be controlled, but an individual with his/her own mind and rights.  And that trying to change something inherent in their child will only end in heartbreak for both.

Life does not always go as planned, and yes, this can be difficult.  Families of autistic people face a good deal of stigma, and have to learn a lot very quickly, and may have to completely revise their priorities and ideas of how a family “should” be.  This, too, is difficult.  Parents of autistic children may fear for their children’s safety, worry about the high cost of therapy, not know how to rearrange their lives to accommodate a child who has very different needs than they expected.  And this is difficult.

But all of this is nothing compared to what an autistic child faces– an entire world that misunderstands him/her, assaults her/him with painful stimuli (over-loud noises, chemical smells everywhere, lights that make him/her feel ill), and on top of it all, expects the child to be the one to change to make everything all better.

It’s hard to feel sympathy for someone we don’t understand, but the autistic child truly needs our sympathy– not pity, not condescension, not praise as inspirational (none of us choose to struggle, and even if we did, we’re not doing it to make some random stranger feel inspired)– but every attempt you can make to put yourself in that child’s shoes so that, perhaps, just a little bit, that child doesn’t constantly have to struggle to be more like you just in order to be accepted or understood.