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Remarks at the 2008 Autism Society of America
"Pieces of the Puzzle" Gala
John P. Hussman, Ph.D.
One of the symbols of autism is a puzzle piece – a missing puzzle piece. It's tempting to think of that piece as some ultimate answer or cure. But if you ask people with autism who have any ability to communicate, you'll find that they're divided on whether they want a cure, but they are united in saying that what they want most is to be accepted, and valued, and seen as competent.
There's no question that we hope for discoveries that will make the lives of people with autism better. But even if we we have a breakthrough tomorrow, it may still be 10 or 20 years until something is available that will significantly improve lives. So we can't give up on here and now.
And that's where the Autism Society of America stands. The Autism Society provides information, advocacy, special events, and community for families affected by autism. All of that is part of the missing puzzle piece. So thank you for your presence here tonight.
Autism is not disability.
Those aren't my own words, but those of a friend of mine named Jamie Burke. Jamie is a 20-year old young man with autism, who was without speech for much of his life, and gradually moved from assisted typing, to independent typing, and today, to speaking as he types.
That idea – autism is not disability – is warm and fuzzy enough to put on a bumper sticker. The question is how many of us are willing to believe it. I mean, the definition of autism is loaded with words like “deficit,” “disorder,” “impaired,” and “restricted.” Can we really believe that autism is not disability? Can we offer people with autism the presumption that they are competent? The answer matters. Because the answer to that question will define the quality of life, the opportunities, and the dignity of the people we know with autism – including our own children.
The founders of our country did an amazing thing. They based our nation's entire foundation on a presumption – what they called a “proposition” – that all men are created equal. When we look back on our history, the only points of true regret are those times when we forgot – that all of us, regardless of our differences, and simply by virtue of our shared humanity, are created equal. That word “all” includes people with autism. So when Jamie says that autism is not disability, he's saying that autism does not diminish a person as a human being. And this is important – he's saying that people with autism are far more intelligent and competent than we might realize.
See, science hasn't developed the ability to read minds, or to measure empathy. How did some researchers decide that 70% of people with autism are mentally retarded anyway? They gave them intelligence tests, without correcting for difficulties in speech or movement. How did they decide that people with autism have no empathy? What advanced scientific tool did researchers use to look inside of people with autism, and deny them of that large a part of their personhood? I'll tell you. They played a game with two dolls and a marble.
Let's do an experiment. Without using your mouth or your hands, I'd like you answer a question we ask people with autism all the time – What's your favorite color? (Nothing? Well, I guess you don't know your colors. We should probably work on that).
Somehow we've come to accept that if a person can't respond to a question with their body , they must not know the answer in their mind . But it's not like the brain either works or it doesn't – or that it has three speeds; high, medium and low. The brain has all kinds of structures and specialized areas. From functional MRI studies, we know that the areas that are active in speech and movement are different from the ones that are active in learning and problem solving. That specialization comes down to differences in individual nerve cells, and the variety of “buds” or “subunits” that make up receptors for neurotransmitters like GABA. I mention those because we're finding evidence from genetics and neuroanatomy that they may be important in autism. The brain is very specialized. So when we give a person with autism a test that relies on their ability to speak or move accurately, we may just be testing their ability to overcome features of autism that have nothing to do with intelligence.
And that's exactly what people with autism tell us. As Jamie Burke wrote, “I understand why kids scream. It's frustrating not being able to speak. What made me feel angry was to know that I knew exactly what I was to say and my brain was retreating in defeat.” Sue Rubin (a woman with autism who also types independently) puts it this way: “Our bodies just won't do what we want them to do. We look retarded when we can't respond to commands.”
Of course, I don't want to minimize the challenges that a person with autism faces. People with autism might struggle to listen to a conversation, because they can't gate out the distracting hum of a fluorescent light. They might persevere on things that make no sense to us – for instance, every morning my son J.P. feels the need to organize every single item by the sink down to the exact placement of the dental floss (and that'll test your patience if you're in a hurry). When takes a multiple-choice test, he picks “A” every time, even when he knows the material (we keep hoping his teachers will give him exams where every correct answer is, in fact, choice “A,” but we're not holding our breath).
And it's not just sight, sound, smell, taste, and touch – autism affects other senses that we parents never heard of before an autism diagnosis, like “proprioception” and “vestibular equilibrium.” The whole family learns new words like that. Like when my daughter was little and asked, “Dad, how come when J.P. eats leaves it's called ‘pica', but when we eat leaves it's called a salad?” Autism can make social interaction overwhelming too, even though a child desperately wants friends.
Still, I'd like to suggest that autism is not a disorder of thinking or a lack of intelligence; that even people who look “severely autistic” to the eye are thinking, feeling, people. Their senses may be overwhelmed, their bodies may be disorganized or uncooperative, but their minds are far more competent than we previously thought. As we discover more people with autism who eventually acquire speech, or develop the ability to type – especially independently – we hear the same thing again and again: “I'm smart. Tell people.”
A few weeks ago, a girl with autism named Carly Fleischmann was featured on ABC news. At the age of 15, Carly, who had been immersed in 40 hours a week of tasks including words and language for years, developed the ability to type independently. That's unusual, because most people with autism who have achieved that have started with some level of hand support, typing predictable spelling words and sentences for years before gradually becoming more independent. A parent of a child with autism wrote Carly after that story, and asked, “What would my autistic child want me to know about him?” Carly replied, “I think he would want you to know that he knows more than you think he does.”
So our responsibility is to presume competence, and then go about looking for it. If you're a parent, tell your child what's going on in the family, in the world – all the interesting stuff that you would share with another child. Hold up your end of the conversation even if they don't hold up theirs. Explain why you want them to do one thing, and not something else. Read words, spell them, type them, and sound them out. Teach them even without needing a test at the end. Their challenge is in responding, not in understanding. So assume that they understand; that they appreciate; that they love, while we keep looking for ways for their mouths or their hands to tell us.
And then love them back. Not for who they might have been without autism, or for who they might be if they were “cured,” but as people who need to be nothing other than who they are, to be loved, and accepted, and seen as competent.
Because when we do that, we open the door for them to share a meaningful life with us, without having to take an admission test. We start seeing the gifts of people with autism, not the limitations. We start to think less in terms of disability and more in terms of humanity. And not least, we sometimes find that the things we like most about ourselves – are there because a person with autism is also there.
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