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Remarks at the 2007 Autism Society of America
"Pieces of the Puzzle" Gala
John P. Hussman, Ph.D.
Imagine if every time you wanted to say something, you had to carve it out of a block of stone.
You would hope that people would recognize that just because somebody isn't able to speak, doesn't mean they have nothing to say.
Communication is sometimes compared with playing tennis – volleying the ball back and forth. But imagine playing tennis – in a hailstorm, of tennis balls. Where the thing you're trying to focus on is just overwhelmed by countless other things coming at you, with equal weight. And even though you know what you want to do; what you want to say; what you want to accomplish; there's enormous interference between your best shot, and what actually comes across the other side of that net.
That's how people with autism experience their world. And we know that because that's what they consistently tell us when they have any ability to communicate. It's also what we're starting to piece together from the clues we get from genetic and neurological research.
See, autism isn't a lack of intelligence. It isn't a lack of ability to think. Autism is a difference in the pathway – between the outside world, and what a person experiences; between what a person intends, and what they're able to demonstrate.
For most of us, that pathway is fairly short. I speak, you hear. You intend, you do. But for a person with autism, that distance might be the journey of a thousand miles, in completely unpredictable weather.
So we should be slow to draw conclusions based on what we observe on the surface. Just because a person with autism might be overwhelmed by social interaction doesn't mean they aren't interested in having friends. Just because they may not be able to demonstrate their knowledge doesn't mean we should withhold knowledge from them; or that we shouldn't share what's going on in the family or in the world with them; or that we should limit what we offer them only to a very simplistic level.
And just because we may not always be able to understand how people with autism feel – doesn't mean that they're the ones without the empathy.
One of the best known adults with autism is a woman named Temple Grandin . She's written several books, one called “Thinking in Pictures.” She's also known outside of the autism community for systems that she's designed for the more humane treatment of animals and livestock, many of which have been implemented in the U.S. livestock industry. She calls those ideas the result of “looking at the world from a cow's eye view.”
It's not surprising that ideas like that would come from a person with autism. Because it does require an enormous amount of compassion and empathy to recognize that we would often treat other living beings differently, if we were able to see the world from their perspective.
And that's what people with autism rely on us to do too.
I used to have something I called my “shoelace indicator.” When my son was in grade school, he used to love to kick off his shoes. And you could always tell whether the person who was working with him that day “got it.” Because if they didn't get it, they would immediately try to fix the behavior. So he would come home and his shoes would be tied in triple knots and sailor's hitches. They would have fixed the behavior – missed the child entirely – but those shoes would be on (and it would be hard to get them off without a boy scout manual).
But if a teacher got it, they must have thought “I know that kids with autism sometimes have sensory issues – maybe even wearing shoes is uncomfortable for him.” And so his shoes would come home tied safely, but loosely enough that he could slip them off during class and slip them on when he went out to the hallway for the next class. Because that teacher wasn't interested in fixing a behavior. The teacher was interested in making sure that every one of the kids in that class was accepted, understood, and successful, and was willing to make the adaptations to make that happen.
So what does a person with autism need? Two things mainly.
First, that we love them for who they are, and recognize that they are more – more intelligent; more capable of thought; more interested in social interaction than they may be able to demonstrate. It's sometimes hard to assume that sort of competence, but when a child hears things like “Hey, I know how hard this is for you,” or “I know how smart you are,” it will make a difference in their lives.
So the second thing they need is for us to be the kind of people who are willing to imagine how people with autism experience the world – How hard is that tennis game? How long is that walk? How tight are the laces? For us to imagine what life feels like – in those shoes.
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