Three favorite autie parent memoirs, not counting the blog memoirs that many of you are writing:
The Siege: A Family's Journey into the World of an Autistic Child
by Clara Claiborne Park
What is most dazzling about Park's 1967 memoir is that she bucked the medical wisdom of her time—she lived through the era of the "refrigerator mom" theory—and kept her daughter at home with their family. While the psychiatrists of the time were telling her that it was Clara's supposedly cold and impersonal nature that was creating her daughter Elly's autism, Park—with a trail blazing courage—quietly ignored them. Trust me, there is nothing cold and impersonal in this book. It's a classic.
Exiting Nirvana: A Daughter's Life with Autism
by Clara Claiborne Park
In the 2001 follow-up to The Siege, we learn how Jessy (aka Elly) fared with the incredible support provided by her mom, her family and their community. She is an artist with a three-year waiting list for her work. Here the happy ending is not a "cure"—but a life a meaningful life in the midst of community.
Elijah's Cup: A Family's Journey into the C0mmunity and Culture of High-Functioning Autism and Asperger's Syndrome
by Valerie Paradiz
Paradiz captures not only the story of raising her autistic son Elijah, but also the emergence of the autism rights movement, and the implications of that movement for how we see our children. Rather than seeing them as "damaged" or "defective" or "diseased," Paradiz models how we can elaborate and celebrate their differences and find ways to create robust and expansive communities for them, for ourselves and for each other. After reading book after book about curing-saving-rescuing my child (titles that are probably familiar to you) Paradiz offered a new way of thinking about autism—through a social justice lens. And if that weren't enough, she writes beautifully. This book is a gift.
Then there are the many books by autistic authors that have come out in the past several years. Donna Williams is probably the most famous autistic individual in the world. With nine published books—many of them bestsellers—she could take almost every spot in a top ten list. I've read about half of them, and found them all helpful:
Somebody Somewhere: Breaking Free from the World of Autism
Like Color to the Blind: Soul Searching and Soul Finding
At the moment I'm reading two of Williams's text books: Exposure Anxiety: An Exploration of Self-Protection Response in Austim Spectrum and Autism and Sensing: The Unlost Instinct, and expect that they will be equally helpful in understanding Sweet M's relationship to the world. And I'm looking forward to reading her newest memoir, Everyday Heaven: Journeys Beyond the Stereotypes of Autism.
Like Donna Williams, Temple Grandin is a renowned autistic woman with several bestselling books, among them, Thinking in Pictures: And Other Reports from My Life with Autism and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior (written with Catherine Johnson).
While working on this list I was surprised to realize that I haven't yet read her earliest book: Emergence, Labeled Autistic. I think I'll try to pick up a copy today. Also, Grandin's mother, Eustacia Cutler, has a book just out called A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story, and that book is definitely on my "to read" list.
Autism and the Myth of the Person Alone, edited by Douglas Biklen with contributions from a variety of autistic individuals, including Richard Attfield, Larry Bissonnette, Lucy Blackman, Tito Rajarshi Mukhopadhyay, and Sue Rubin. Reading about the world from the perspective of these autistic writers has been as helpful as anything I've read by a medical professional.
Finally, two books that I love because they've helped me understand the implications of the social constructions of disease and disability . . .
Life As We Know It: A Father, A Family, and an Exceptional Child, by Michael Bérubé. As a professor of comparative literature and cultural studies, Bérubé turns his knowledge of these fields to the task of understanding life with his Down Syndrome son. That might sound boring, but it's not. Believe me, it's amazing. He covers everything from our aversion to "feeble mindedness" to the problem of prenatal testing and the elective termination of Down Syndrome pregnancies.
The Spirit Catches You and You Fall Down by Anne Fadiman. Fadiman tells the story of how cultures collide—with disasterous results—over the body and soul of a young Hmong/Laotian girl with epilepsy. Among the Hmong, Lia Lee's epilepsy is viewed as a sign of her special connection with the spirit world. But in the Merced, California community where her family lands as refugees from from the disasterous debacle of the American-Indochinese War (aka the Vietnam war), Lee's epilepsy is viewed as an illness to be treated. When the medical community requires that Lia be removed from the loving care of her family, calamity results. If you ever had any doubt that diseases are social constructions, then read this powerful account.
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That's my current list of favorites, with an emerging list of others to read. What are yours?
Note to readers: If you click on the text links for titles, you'll land at Amazon. If you click on the pictures, you'll land at Barnes and Noble. Some readers don't shop at Amazon because CEO Jeff Bezos gives so much money to the Republican party. And some readers don't shop at B & N because CEO Leonard Riggio supports the Democrats. You pick. Personally, I like to use the public library.
Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • special education