Posted August 17, 2007 | 02:36 PM (EST)
"Reasonable people promote very easy breathing," my adopted son, DJ, once typed. For this non-speaking boy with autism, abandoned at the age of three and literally tortured in foster care, anxiety remains his biggest challenge.
"Your breathing would make me nervous," he wrote to his teachers at the special school he attended before we adopted him. "Why weren't you teaching me to talk, to read, and to write?" he remonstrated them. "I very much value teachers who give nice instructions breathing easily."
In contrast, he extolled his time in a regular classroom: "Easy, quiet breathing waits to hear my words, and respect grows. Awesome, caring teachers read my writing and reward me by writing back." It's as if DJ, a sixth-grader, had transformed the primary, physical symptom of his anxiety -- heavy breathing -- into a political concept.
In this way, the amelioration of anxiety has been inexorably tied to the experience of inclusion: of being wanted by family, school, and community. "Breathing feels great now," he declared on his talking computer during an especially good stretch in the sixth grade. "Breathing feels kind of like joy. When I'm breathing easily, I'm sort of like respected kids."
How can respected adults breathe easily about autism? For one thing, we can promote inclusion as an opportunity to get to know autistic individuals. Such interaction would help to debunk the idea of a catastrophic disorder that precludes awareness of self and others. For too long scientists have terrorized us with this claim.
For another, we can devote more research money to improving the quality of life for people with autism. For every two studies on the cause, or causes, of autism, there ought to be at least one on the goal of autistic self-fulfillment. With richly rewarding lives as the norm, non-autistics might be less hysterical about finding a cure.
Don't get me wrong: autism presents significant, sometimes monumental, challenges. DJ, for example, is unable to speak, has sensory processing difficulties, and engages in repetitive behavior.
And yet, the boy who was labeled profoundly retarded when he came to live with us at the age of six is now a straight "A" student in a regular school, testing off the charts and using a computer to communicate. He's also the most empathetic and politically conscious young person I know.
I'm convinced that we can move forward with a vigorous research agenda while respecting the person with autism. But we have to make room for this difference in the world. We have to reduce the stigma attached to it. At the same time, we have to provide more support for parents who frequently find themselves at the ends of their ropes.
A few years ago, DJ was asked to compose a paragraph about the American flag for an Elks Club writing contest. His paragraph went like this: "The great United States of America is breathtakingly not free. Equality is not sacred because not everyone has access to it. Free people treat my people, very smart people who type to communicate, as mindless.... The creators of everyone's very important Declaration of Independence wasted their breath."
Here was a boy demanding his place in America. I took note of the signature metaphor and pictured democracy itself in respiratory distress.
Recently, DJ was much more sanguine -- and serene -- in an essay comparing the plight of his "people" with that of African Americans; he'd just studied the civil rights movement. "I imagine my words resembling dead Martin Luther King's respectful vision," he typed.
Might we neurotypicals mirror such equanimity when confronting the challenges of autism?
Ralph James Savarese is the author, with his son, of Reasonable People: A Memoir of Autism and Adoption (Other Press 2007). He teaches American literature, creative writing, and disability studies at Grinnell College.