Autism Awareness – A Parent’s View
April is National Autism Awareness Month, which naturally begs the question: awareness of what? As a parent of a 19-year old son with autism, if you had asked me that question years ago, I would have said things like: be aware that kids with autism can be experience sensory overload; or be aware that creating teaching opportunities around an autistic child’s interests can help him learn. 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 within two minutes.
A few years ago, I asked Jamie Burke, a young man with autism, what he wanted people to understand. He replied in four words. “Autism is not disability.”
That idea – autism is not disability – seems warm and fuzzy enough to put on a bumper sticker. The question is whether we are willing to believe it.
Even 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 more intelligent than they might be able to demonstrate? Can we recognize that social interaction may be overwhelming, even if they desperately want friends?
The answer matters. Because the answer will define the quality of life, the opportunities, and the dignity of the people we know with autism – including our own children.
When Jamie says “autism is not disability,” he’s saying that autism does not diminish a person as a human being. 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.
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 of us 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.
None of this is to minimize the challenges that a person with autism faces. Autism can affect every sense; sight, sound, smell, taste, touch, and even a few senses that we parents never heard of before an autism diagnosis, like “proprioception” and “vestibular equilibrium.”
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 develop speech or other ways to communicate, we hear the same thing again and again: “I’m smart. Tell people.”
As one of the largest private funders of autism research in the country, I’ll tell you a secret. Science has not developed the ability to read the minds of people with autism, or to measure the empathy in their hearts. 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 little to do with intelligence.
So our responsibility is to presume that people with autism are competent, and then go about looking for ways to help them demonstrate it. If you’re a parent, tell your child what’s going on in the family, in the world – all the interesting things that you would share with another child. Hold up your end of the conversation even if they don’t hold up theirs. Create teaching opportunities out of their own interests. Give them the dignity to be embraced as ordinary, more often than they are excluded as special. Teach them and read to them even without needing a test at the end. Assume that they listen; 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.
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.
The author is the Director of the Hussman Foundation, and helped to establish the Hussman Center for Adults with Autism at Towson University, and the Hussman Institute for Human Genomics at the University of Miami.