When my oldest daughter was born in 1991, the phrase Asperger’s syndrome was known, if at all, to only a very few specialists. It certainly was a new phrase to me when my daughter was—after numerous tests with many, many specialists—at last diagnosed with Asperger’s. This was before there was talk of an autism epidemic, and way before Asperger’s became a more widely known phenomenon.
Because my daughter was diagnosed so early in what has been described as an epidemic, I absorbed, in real time over two decades, all the good and bad information associated with autism spectrum disorder.
Very early on, I looked at the alleged vaccine connection and, being a firm believer in real science, saw the link was false, and I moved on. I saw the term Asperger’s syndrome swallowed back into the overall autism spectrum. And, through my daughter, I discovered traits in myself, the way I was as a child and an adult, that make me wonder whether I am on the spectrum.
To me, though, the label is less important. My daughter is twenty-five years old now, doing wonderfully, and I cannot imagine her any other way.
But between all the pet theories, and pages upon pages of speculating about cause, often what is left out are the voices of autistic people themselves, or their families who can speak for them. And those are the voices I’d like to feature in this edition of IndieVoices. Rather than focus on causes, we’ll hear voices from the autism community.
You can listen to the entire podcast here, or individual interviews at the links below. Please let me know what you think.
Visual Thinker: I first met Temple Grandin back in 1999, when I lived in New York, where she was giving a lecture on humane treatment of animals. She explained how her autism makes her relate to animals better than people because, like animals, she thinks in pictures rather than words. Over the nearly two decades since, Temple has acted as a kind of ambassador to the non-autistic world. And she’s used her autistic mind as a superpower to focus on animal behavior. Listen to our conversation about animals, autism, and visual thinking.
Growing Up: Much of what is written about autism concerns children, but children grow and each family establishes its own parameters of normal. By the time they are teenagers, routines are well-established and patterns can develop for how they will cope as adults on the autism spectrum. Here is where an author like Liane Kupferberg Carter comes in. In her book, Ketchup is My Favorite Vegetable: A Family Grows Up with Autism, published by Jessica Kingsley, she talks about raising her son, Mickey, who is autistic and also has epilepsy, through the decades into early adulthood. Listen to my conversation with Liane Kupferberg Carter.
Beyond Rain Man: Asperger’s sydrome may now be an outdated term for one point on the autism spectrum, but it still has a place in popular culture and literature. In the newest TV depiction of Sherlock Holmes, actor Benedict Cumberbatch depicts the famous detective with most definite Asperger-like qualities. But one mystery writer seems to have gotten it right. Jeff Cohen, writing under the pen name E. J. Cooperman, describes his lead character like this: “For Samuel Hoenig, Asperger’s isn’t so much a syndrome as it is a set of personality traits.” Cohen has written a number of Asperger’s Mysteries and he joined me on IndieVoices to discuss Asperger’s and autism in fiction.
Author Reading: Jem Lester is the father of an autistic child. And that’s what informs his highly original debut novel called Shtum, published by The Overlook Press. It tells the story of a father’s struggle to care for his nonverbal, autistic son. In fact Shtum is Yiddish for silence, but this book speaks volumes about love, family, sacrifice, and even the ability to keep a sense of humor. Here is the author, Jem Lester, reading an excerpt from Shtum.
Howard Lovy is executive editor at Foreword Reviews. You can follow him on Twitter @Howard_Lovy