Autism advocates should promote acceptance, not fear
TheStar.com – Opinion/Commentary – Writer Joel Rubinoff says autism advocacy groups that characterize the condition as a national crisis don’t represent him or his autistic son.
Apr 21 2014. By: Joel Rubinoff
While everyone was “lighting it up blue” on World Autism Awareness Dayearlier this month, lamenting what has been termed “a monumental health crisis” that now targets one in 68 kids, I happened to glance over at my son Max and noticed he was fidgeting at the dinner table.
Max has autism, a diagnosis he received two years ago to the stunned disbelief of his beleaguered father.
And when he’s excited, agitated, or maybe just restless, he finds it hard to sit still.
So he’ll bounce and squirm and laugh about nothing and bonk me affectionately with his head — trying to engage.
And after much pleading and gentle admonishment (“Dammit, man, eat your peas!”), he’ll grudgingly settle down to finish his dinner.
This is autism: an eager, energetic kid who needs unconditional love, support and, yes, the occasional kick in the butt.
Yes, it’s a disability. But Max isn’t broken, diseased, a sign of society’s downfall.
He isn’t the sad-eyed waif in autism fundraising campaigns, a lost cause in search of a cure.
So why is the head of North America’s premiere autism advocacy group — which presumes to represent me — telling the public that kids like Max are “gravely ill,” that his body and soul are “missing,” that his very existence is causing his family to live “in despair — in fear of the future”?
It’s a “national emergency,” Autism Speaks co-founder Suzanne Wright insisted in an open letter that sparked outrage and a Boycott Autism Speaks campaign.
Hey, it makes for a great fundraising hook. Create a crisis and watch the money roll in.
But it has nothing to do with my reality, or judging by the outrage percolating online like overcooked popcorn kernels, the lives of many touched by autism.
“Autism Speaks is the only major medical or mental health non-profit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target,” wrote John Elder Robison, the only autistic member of the group’s governing board when he resigned his post in disgust last November.
“We are not problems for our parents or society, or genes to be eliminated. We are people.”
I get the issue. There’s no medical baseline for autism, no known cause or cure. It’s the Wild West of disabilities, a freewheeling haven for:
- Snake oil peddlers hawking dubious miracle cures.
- Celebrity wackos championing disproven links between autism and vaccines.
- Complicit fundraising organizations given to unprincipled shilling on the backs of those they claim to represent.
Everyone’s an expert, and nobody knows anything.
But if you stick to reputable sources, there’s reliable information that indicates:
- The escalating diagnosis numbers — up 120 per cent from 2002 — are most likely due to better screening tools, not some creeping environmental boogeyman.
- Autism encompasses a spectrum wider than the Grand Canyon. Yes, there are those who struggle at the low end. But many autistic adults are smart, capable thinkers who — given the proper supports — can excel.
Autistic people don’t need your pity. What they need is to not be stigmatized as social lepers and burdens on society.
When Max was diagnosed at three, I was firmly on side with this “Oh my god, my life is over!” camp, because that’s what was out there: hopelessness, despair, your kid’s future is toast, baby, so don’t even bother.
Two years later, I feel like I got snookered.
Yes, it bugs me when he pulls up the back of my shirt at the grocery store or plops down in a snowbank on our walk home from school, overwhelmed by the day, refusing to budge.
But did you know that halfway through senior kindergarten — and I’m not saying he’s typical — he’s already learning to read.
That he’s fascinated with space and science, and can name all the planets.
That if you tell him it’s Hotdog Day at school he’ll squeal with delight. “I’m so excited, Dad — I can’t wait!”
This too is autism. Temple Grandin, who revolutionized the humane treatment of livestock, is autism.
Daryl Hannah, movie star and fearless environmental campaigner, is autism.
And if the conjectures regarding those prediagnosis days are correct, so are half the geniuses of the 20th century.
Instead of fear-mongering, how about a fundraising campaign that talks about the untapped potential in our midst, the gold at the bottom of the mine shaft.
How about a campaign that says differences should be celebrated, not demonized.
How about a campaign that champions not just awareness — a dubious term, surely — but true acceptance?
Now that would be something to “light up in blue.”
Joel Rubinoff is a columnist for the Waterloo Region Record, where a longer version of this article previously appeared. He is also the father of an autistic son who likes to pull up the back of his shirt in grocery stores. Email him at firstname.lastname@example.org
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