I’m attending the Aspen Ideas Festival for the next six days. As a result I am meeting a great many interesting people. But many people who see my Press badge are curious, what do I write about? How is it that I’m at the Aspen Ideas Festival? Inevitably the conversation comes around to autism, because let’s face it, that is what I write about more than anything else. Autism is something that everyone has an opinion on, or if not an opinion, then a great many ideas.
Most of the comments I hear are in the – It’s an epidemic, vaccines must be the reason, or questions about where on the spectrum my daughter Emma falls. If I say something positive about my daughter, they usually respond with the mistaken assumption, “Oh she must be Aspergers,” or “You’re so lucky she’s so “high functioning.” As though that could be the only explanation for words that aren’t negative. Amy Sequenzia eloquently describes her journey from ableist to advocate, on the blog, Autism Women’s Network. It is the single best description I’ve read, which explains beautifully how our perceptions and ideas about autism affect those who are autistic.
Often people want to tell me stories about someone they know whose cousin, brother/niece/son/grandchild/best friend’s step brother/best friend’s neighbor, is autistic. Sometimes people are genuinely interested and will ask me questions, but most of the time, they prefer telling me about that person they know twice removed who knows an autistic person. There is a tremendous amount of fear out there. I hear it all the time. People talk about autism with the same grave tones they speak of the environment.
So I wasn’t surprised this evening when I met a couple who’s close friend’s grandchild was autistic. ”It’s so sad, just awful,” the woman said. And then shaking her head she added, “It’s such a dreadful disease.”
“Actually it’s not a disease. It’s not contagious. It’s neurological,” I interjected.
The woman paused and stared at me and then said, “It’s horrible. Very, very sad.”
“I don’t see it as a tragedy,” I began.
“Oh,” The woman interrupted me, “well, of course you don’t.” She took a step back and smiled. And just like that, the conversation was over.
When I have these sorts of conversations, I see just how far we have to go in educating the public. I know we will have to undo centuries of ingrained thinking about disability. I understand that some people will never be convinced. I hear others who have an opposite and yet equally unrealistic view of autism. They are the ones who usually bring god into the mix, or talk about angels, or how these children are all geniuses or shamans, but whichever extreme they choose it is still an extreme and both do damage to those who are living their lives on the spectrum. Whether they are being condemned as a tragedy or placed on an altar, they are being put in an impossible position that does nothing to actually help them.
It’s tricky. How do you think about someone who needs tremendous support? For many it is impossible not to project pain, suffering and the idea of tragedy onto them. But very few people I know who are autistic or disabled want pity. They want help, support and acceptance so they can flourish. Pity or the converse of that, adulation, holding them up as divine creatures put on earth to teach the rest of us some hard-earned lessons, is not something I’ve ever heard an Autistic say.
One of the presenters at the Aspen Ideas Festival, Louie Psihoyos, who directed the amazing Academy Award winning documentary, The Cove, said during the Festival’s opening, “A few thoughtful people can change the world.”
I believe that absolutely, I believe.
Emma on the 4-Wheeler