I will risk pissing some people off here because I think this has to be said.
The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion.
Let me start by saying that, while I am tired of a great many things, after seeing that PSA I realized that I am particularly tired of two things in the world of autism right now: doom-filled ads and statistics, the former I’ve seen referred to recently as “autism doom porn.” I realize that both of these are intended as instruments for awareness raising with a public that knows little about autism. I still think they only serve to bring us all down.
1 in 110 is eye-opening. The progression from 1 in many thousand drags you into the downward spiral toward doom. 1 in 70 feels like a cataclysm.
Statistics suck. They can make the same thing seem wonderful or awful.
109 in 110 seems like a typo. 69 out of 70 sounds like great odds. Neither would do much more than leave you a little confused and scratching your head about what the big deal was. But that in itself isn’t my point.
Statistics seek to classify, group, and analyze things as objects. Those savvy to autism know what the first set of statistics above refers to. I could, however, just as easily have been referring to oranges or pretzels. Regardless, these numbers aggregate, classify, and simplify. We believe autism is much easier to understand when you sort it out like this. Of course, in the process you flatten all the diversity out of it and erase the personalities of every one of our children.
Some think this makes good TV and fundraising ad copy. At best I find that very, very debatable.
So on to my version of autism statistics. There are only two statistics that matter to me right now. I’m going to be obnoxious enough to say they should be the only two that matter right now period.
1 in 1.
1 in infinity.
If you’ve met one autistic person, you’ve met one autistic person. You haven’t met some 1 in 70 or 1 in 110. You’ve met 1 in 1.
They have a name. They have a personality. They aren’t a number. They have potential. They have feelings. They are wonderfully made. They are.
They are unique in all the universe. There has never been anyone else like them, and there never will be. They are the most precious gift of all. They are irreplaceable. They are 1 in infinity.
The other statistics may help raise money and supposedly make for compelling awareness campaigns, but they set a dangerous tone. We get caught up in this specter of doom, and that rarely does us any good. In fact, I think it’s destructive. We don’t need this in our lives. We know life can get really hard. We don’t anyone to tell us that. We need a different perspective. We need a spirit of hope and a way toward transformation.
I think these doom-filled ads work against the very changes we ultimately seek. The public have become numb to a generalized, widespread sense of impending doom. We get it from everywhere. People don’t get excited about causes where they are fighting some vague, nameless, statistical doom either.
Why do Heifer International, Save the Children, and Kiva – to name but a few – raise so much money and bring about such transformation in the world? Because you are buying a goat for a village, supporting a specific child, or helping fund a specific entrepreneur. You aren’t donating money to combat hunger or some vague, evil force in the world. You are doing something specific for one person or one village. You become involved in individual stories of transformation and hope. You become invested in their future.
When we raise awareness, we often want people to be as passionately involved in autism as we are. That’s rarely going to happen. We certainly can’t scare people there. We want everyone to join and fix the grave injustices we and our kids face. We’re asking for too deep and too vague an investment. We are the ones with all our skin in the game. The general population will never have as much at stake here as we do.
What do I think the answer is? Tell your story. Proclaim both your challenges and your pride and everything else. Speak of every joy and lament. Describe what it feels like when your child is finally able to do something that seemed impossible before. Become like the wandering storytellers of old. Share the whole, rich landscape of your lives together.
Tell your story to educate and inspire. Ask the person you tell it to for one thing, one thought, one action, one small something. Don’t ask for the world; just ask for one small step. At worst, we get one helpful act of kindness, one seed of good planted. At best, maybe we gain a committed ally and advocate. While none of us on our own can accomplish a task like “save the planet” or “fully fund disability services in every state”, perhaps all the people around us can achieve something like “the next time you see a child throwing what you think is a spoiled temper tantrum in the store, consider the child may have needs you aren’t aware of, and share a kind word or a helping hand with that parent.”
And that is how change begins, takes root, and grows. No one’s statistics will ever do that.
We need to see the 1 in 1. We need to see the 1 in infinity. We need to start there. Make a difference to one child. Celebrate the achievements of one child. Rejoice that we have been given the impossibly rare gift of each one of them. That’s how the world changes, not with this statistical doom porn.
Because each of our children is the only one like them. They only get one shot at life. We only get the gift of them in this world once. Let’s go act like that’s true.
[Update 3/29/12 – Today the CDC released new statistics stating that 1 in 88 children now have an autism diagnosis, 1 in 54 for boys.]