Krista's Journal: What It Means for Me to Be Human

September 27, 2007

The Centers for Disease Control report that 1 in 150 children in the U.S. is now diagnosed somewhere on the spectrum of autism. In other words, this is a condition that affects many lives, many families. General reporting and publicized controversies tend to focus on the physiology and neurology of autism, or on possible causes and cures. As I've followed such stories, I've longed to understand something about the inner world of people with autism and those who love them. I've wanted to hear about autism in terms of spirit, intellect, and human nature. And when I discovered Paul Collins' warm and erudite book Not Even Wrong: Adventures in Autism, I knew I'd found a way in. During a routine checkup, his beloved son Morgan was diagnosed with autism at the age of two and a half. Paul then went searching for understanding in history and literature. He traced the winding process by which 20th-century physicians finally diagnosed autism after centuries in which it was conflated with very different conditions, such as schizophrenia and Down syndrome. He had previously written about eccentric characters and forgotten inventors in history, and he began to find evidence of autism in some of these figures who had already captured his attention. In his travels, he also experienced how the spectrum of autism quietly reaches into centers of contemporary invention — such as Microsoft. Some of our programs feel like an "experience" in the making. This one did. Paul Collins and Jennifer Elder have opened my imagination about what it means to be human, as well as what it means to be autistic, without for a moment downplaying the debilitation that life with autism also entails. I had imagined this condition to be thoroughly isolating and inscrutable. The very word "autism" comes from the Greek for "self" — autos — connoting a state of being in which a person seems quite literally to live in his or her own world. And yet Paul and Jennifer help me grasp that autism is not one thing but a spectrum on the vast continuum of human personality. Autism has deepened their understanding of disability and of intelligence, curiosity, and accomplishment. Most thought-provoking of all, perhaps, are their stories of how life with Morgan has imparted a new generosity and respectful good humor to their dealings with each other and their families of origin. There is a documented correlation between autism and families with achievement in fields like engineering, music, mathematics, science — professions that require an aptitude for logic and a capacity for intense, solitary focus. You can read a beautiful essay on our Web site by the late scientist Stephen Jay Gould about his son with autism. Paul writes this: "Autists are described by others — and by themselves — as aliens among humans. But there's an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. But autism is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result." There is more in this hour of radio than I can evoke in these paragraphs. And if you enjoy it, I'd encourage you to listen to my original, unedited two-hour conversation with Jennifer Elder and Paul Collins online or as a podcast. It is full of illumination and warmth, and I didn't want it to end.

Recommended Reading

Image of Not Even Wrong: A Father's Journey into the Lost History of Autism
Author: Paul Collins
Publisher: Bloomsbury USA (2005)
Binding: Paperback, 256 pages

Not Even Wrong: Adventures in Autism is Paul Collins' delightfully written, moving, and deeply informative memoir of one family's contemporary experience as well as a tour through autism in historical, literary, social, and medical perspective.

Image of Autistic Planet
Author: Jennifer Elder
Publisher: Jessica Kingsley Publishers (2007)
Binding: Hardcover, 48 pages

Jennifer Elder has authored two illustrated books for children and families. Different Like Me: My Book of Autism Heroes describes historical figures of great achievement who she and others believe might have been somewhere on the vast spectrum of autism. Among them are the scientist Isaac Newton, the primatologist Dian Fossey, the comedian Andy Kaufmann, and the "father of modern computing" Alan Turing.

Autistic Planet. This picture book evokes a world that imaginatively incorporates some of the motor traits and sensory sensitivities that can make people with autism say they feel alien in human society.

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is a literary historian and author of Not Even Wrong: Adventures in Autism.

is an artist and author of Different Like Me: My Book of Autism Heroes.