I feel for Suzanne and Bob Wright, the heads of Autism Speaks. I really do. Like so many of us, this thing called autism came along and blindsided their family. But unlike many of us, it seems they've chosen to view their grandson's diagnosis as nothing short of a curse.
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And that's too bad, because for an organization that claims to build awareness, the rhetoric used by Autism Speaks directors is bleak at best. Take Wright's latest address—to the Vatican no less—in which she urges us to "look into the eyes of our loved ones, as Saint Francis did with the leper." Nice.
Time and again, Wright generalizes her family's situation and fails to consider the entire spectrum, assuming that all Autistics can't communicate or enjoy a hug. Can't this, can't that. Through the AS lens, autism is a hopeless sentence.
While I feel sorry for Wright, as the head of an organization with so much potential, her stance is not only reproachful but irresponsible, as it does not give the floor to the very people it claims to serve.
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Wright acknowledges that "without awareness, there can be no education and understanding and compassion." What kind of awareness is AS bringing to the table exactly?
After all, awareness is more than lighting monuments blue. It's more than a bunch of T-shirts and puzzle-motif paraphernalia.
In a 2013 Call to Action speech, Wright claimed that autism families "Are not living. They are existing." And that life, in her estimation, involves little more than wading through despair and fear. Sure, as a mom to a young son on the spectrum I have black days. Autism isn't a walk in the park surrounded by unicorns and rainbows, but it's not always the gallows, either.
"This is autism," Wright said. I disagree. This is one person's experience of autism, not that of some "70 million" people.
It's no wonder John Elder Robison bowed out of the AS board of directors following Wright's 2013 diatribe. Among other things, he blamed the organization's perpetual failure to acknowledge that a neurological difference bestows gifts as well as challenges.
Autism Speaks has chosen to view autism as a tragedy. But I would argue that the only tragedy here is how such a powerful platform—with the potential to do so much good for Autistics and their families—is choosing to use that voice.
Autism Speaks, but I wish it would listen, too.