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Be careful what you wish for. This familiar adage struck me when I received an invitation from the Autistic Self Advocacy Network to join a protest on Wednesday against another autism advocacy group, Autism Speaks.
This may sound like the old Monty Python's “Life of Brian” bit where two obviously like-minded religious groups — the People's Judean Front and the People's Front of Judea — were fighting to the death against each other. Or like the Menshiviks versus the Bolsheviks. You're all crazy, a curse on all your heads, my great-grandmother would have said. But in the autism community, the rift among advocates is serious. And far from being funny, it is causing me a lot of pain.
I remember when my autistic son, Nat, was a baby. That was 24 years ago and back then no other kid had autism – or so it seemed. I needed a friend so badly. But the frequency of autism back then was something like two in 10,000. I still don't know what that means. Why don't they say one in 5,000? In any case, the numbers added up to acute loneliness. I can only describe my feelings back then as dread, the sense that my boy and I were somehow in trouble.
When I finally did find a playgroup, the other toddlers seemed years beyond my Nat, with their interest in trucks and Sesame Street — the characters and the stories, that is. Not the credits that rolled by at the end, the only part that delighted Nat. The hollowness inside me, the feeling that I was just acting, not being a real mom, orbiting around the playground planet. There was no relief until I finally found a support group of other autism parents in Brighton.
I have friends on both sides, fighting each other. They think I should take a side, take a stand. I can’t. They’re both right.
This was the early 1990s, when causes had colors, red ribbons for AIDS, pink for Breast Cancer. I lusted after other causes' popularity. Why couldn't there be a fundraiser benefit somewhere for autism? Where was our ribbon? I once explained to a hair dresser that Nat was "autistic," and she said, "Oh, isn't that great!" She thought I'd said, "artistic."
These days, the autism advocates actually might respond that Nat's autism is indeed great, or at least that it is fine, because it is part of him. To these advocates — many of them autistic themselves — autism is just a different and unusual way their brains perceive things and we should all try hard to learn to see things his way. He's all there, is what I hear now. He just has difficulty getting it out. This is true. I love thinking of Nat like this, as very original and someone who understands but shows it in his own quirky way. Getting to know these autistic adults has soothed my younger pain like nothing else.
But there is the part of me that may never entirely be free of that fear that settled heavily inside when I was a young mother, alone and terrified. Why terrified, I still wonder. And it's the other autism group that knows the answer. The parents who do not know how to reach their child, who can't separate this beautiful kid's "different neurology" from the other challenges that can accompany autism. Those whose children can't even tell them that they're in pain. Whose children may very well be incredibly bright or cognitively limited, and they still have not learned anything much in school. Then there's the universal parental fear of dying, and having no one to love and care for this beloved child. Some of the autism advocates I know equate all of this pain with autism, and they hate autism. They want to end it, cure it, fix it. This, in general, is the Autism Speaks perspective. The help they offer takes the shape of raising awareness and money for research. They do spend resources on helping autistics themselves and their families, but the bulk of their mission is to get the public to mobilize against autism.
So I have friends on both sides, fighting each other. They think I should take a side, take a stand. I can’t. They’re both right. Why does this happen to causes? Why can’t people see when they are all in something together? Why aren’t we trying harder to listen and connect? I sometimes feel it’s like the biblical story of Solomon. That the activism community is like the two mothers who claimed the same baby, and won't know who is right until someone like Solomon suggests splitting it in half?
Sometimes I just shut it all down and go back to my beginnings as a mom. The side I’m on? Nat’s. I look at Nat and it's just him and me again. I love him, I’m proud of him, and yet I still fear for him. I hate certain facts about his life. But now I’m older and perhaps I am wiser, because I know that we are going to be okay. And in the end, that's everything I could wish for.
- Also by Susan Senator: ‘I Am Listening’: What Every Autistic Child Wants You To Know
- Here & Now: Nobel Winner’s Research Gives Hope To A Family Dealing With Autism
- CommonHealth: Is The Autism ‘Epidemic’ Over?