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Remarks at the 2011 Howard County Autism Society
"Pieces of the Puzzle" Gala
John P. Hussman, Ph.D.
If you look around the parking lot tonight, you'll see a lot of ribbon-shaped magnets that say "Autism Awareness." And that naturally begs the question - awareness of what?
As a parent, if you had asked me that years ago, I would have said things like: Be aware that kids with autism can be more sensitive to sensory overload, or be aware that this adaptation or that can help kids with autism to succeed in learning. Or if I was meeting one of my son's teachers - be aware that if you leave that scented candle on your desk, it's going to have a perfect bite taken out of it in about two minutes.
And in general, my idea of autism awareness would have focused on ways in which people with autism are different. Of course, that's what you see in any brochure about autism: this is abnormal, that is impaired, this is defective, and so forth. But if we limit our idea of awareness to what's wrong and what makes people with autism different from us, we completely miss what is essential.
Because what is essential, is to be aware of what makes us the same.
About 6 years ago, I was at a TASH conference in Baltimore filming a documentary called We Thought You'd Never Ask. And that day, my whole perspective changed. See I always believed that people with autism were more intelligent than they might be able to demonstrate, but I also took that mainly on faith. Then I met Sue Rubin , and Jamie Burke, and Larry Bissonette, and other people who might have easily had their intelligence overlooked, or even labeled with a meaningless word like "low" - except for the fact that they could communicate richly by typing.
They'd be the first to tell you that they aren't unique - except for one thing: somebody, somewhere gave them the grace to presume their intelligence even without seeing it, to guide them through years of practice, with a never-ending belief in their competence.
Many of you met Jamie here last year. Larry is featured in a new documentary we produced called Wretches & Jabberers. Sue has very little spoken language except phrases like "Doe-dee-doe," but she can type independently. And if there's one thing to remember in our awareness of autism, it's what Sue tells us: "We are just like you, with the same needs and desires, and just need help to be typical members of society."
Something that we're discovering in many ways on the research side is that autism appears to affect not only synapses, but the way that nerve cells protrude, extend, and guide themselves to form connections. In autism, that connectivity seems to be different, but it's very subtle. There's nothing missing, it's just that there appear to be slight differences in how some of the circuits are organized.
As a way to think about this - suppose you have a beautiful piece of music, and the wire to the speaker is hooked up just a bit differently than usual. Again, nothing major, just very subtle. Even so, that might be enough to keep the speaker from working the right way.
And that's exactly where this idea of "awareness" comes in. Because if we are aware, we recognize that even if the speaker isn't working right, there is still beautiful music there, that hasn't simply gone away.
If we are aware, we don't just spend our time talking about how the speaker doesn't work. We don't conclude that, oh well, there must be nothing going on in there, or if there is, it's probably just an endless loop of Mary Had a Little Lamb.
No, if we're aware, we remember that truly beautiful music is still there, even if we don't hear it, and then we work to find ways to let that music be heard.
Antoine de Saint Exupery wrote "What is essential is invisible to the eye. It is only with the heart that one can see rightly."
People with autism deserve the presumption of competence. They deserve the dignity to sometimes just be embraced as ordinary instead of always excluded as special. They need us to see what is still invisible, and to hear what can't yet be heard.
Autism awareness can't stop with a list of things that make people with autism different from us. Because what is essential - is the constant awareness of what makes us the same.
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