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Dan Burns’ Savage, Sacred Passage through the Land of Autism by Sandra Dutreau Williams, PhD

A review of Saving Ben: A Father’s Story of Autism, by Dan E. Burns, PhD, University of North Texas Press, 2009, 154 p.

By Sandra Dutreau Williams, PhD

Saving Ben: A Father’s Story of Autism is a book you can read straight through like a novel. It’s a story that snags us emotionally – sad, sweet, terrifying, joyful, hopeless, hopeful, and whole. It shows us a continent we can barely imagine if we have never been there.

I came to that continent as an explorer with Dan Burns as my guide. I attended the 2010 AutismOne conference after editing Saving Ben, and I listened compassionately as parents told their stories: how they have struggled and learned to cope, finding strength and courage they didn’t know they had. They endured through fear, disappointment, resistance and frustration to fail, fall, and rise again. Above all, they came to love in a new way.

I knew Ben because his parents Dan and Susan graduated from high school with me and Ben’s grandmother was my neighbor. Baby Ben was a sweet boy, curious, playful, responsive and loving. I remember watching him, a droopy-diapered toddler, pull himself up on the bookcase, tune the radio dial and then stand there, rapt, listening to the music.

“They say Ben is retarded,” his grandmother told me, “but I don’t believe it. A child who loves music like that!” By his third birthday Ben was no longer playing, talking, or hugging. “They say Ben has autism. It can’t be!” But when she saw him again, she was stunned. There followed stories of divorce, financial crisis, mental illness, and the relentless fight to save Ben.

Years later Dan and Ben, a teenager, stayed with us. Dan was tense, distracted, hyper-alert, never letting Ben out of sight. Ben screamed. He stomped through the house with his fingers in his ears. He wandered at night, springing into our bedroom. He flapped his hands, didn’t talk or make eye contact. I gave him old necklaces to play with. He’d twirl them and suck them and finally pull the beads off one by one, tossing them behind him until only the string remained. He pulled the leaves from bushes with the same rhythmic, repeated movements until only a stringy stem was left. He let out loud, low-pitched ululating moans. He would bolt, so at mealtimes Dan kept one hand on Ben’s shoulder to catch him before he could split.

“How can Dan live with this?” I thought.

In Saving Ben Dan Burns answers that question with rich imagery and dynamic writing. He shows us their world as it rises with hope, circles in confusion, slips out of control, and crashes. They survive; they reach higher ground as Dan doggedly reconstructs his life and Ben’s, pushing through what all parents of autistic children face in raising someone unlike anyone they’ve ever known.

As editor of Saving Ben, I was delighted when the book won first place in the prestigious 2008 Mayborn Literary Nonfiction Competition and with the praise it has garnered:

“Powerful and inspirational, filled with tragedy and triumph, it’s the story of one father’s journey to hell to rescue his son from the grips of autism,” said Nancy Master, mother of a formerly autistic child. “I could not put this book down.”

“This book is not just about autism. It is about struggling against prejudice. It is about trying to access information clouded by egos and stereotypes. It is about fighting an archaic system. And of course, it is about the strongest force in the universe: the love a parent has for a child.” Sylvia Pimentel, Moderator of the Sacramento Autism Biomedical Group and parent of two boys with autism.

“It’s the story of the transformation of love made of stubbornness, perseverance, exhaustion and at times, fury. Any parent will be humbled and inspired by the honesty, perseverance and love this father found in himself.” Beverly Voss, LCSW (Licensed Clinical Social Worker).

I see the family often now. What amazing progress! Dan is centered and laughs easily. He’s a gentle, loving and patient father. Ben, 23, looks at me, smiles, says hello and goodbye and gives me a high-five. He still loves music. He’s happy. And he’s a young man facing an uncertain future.

Working with this book, hearing parents’ stories and moving deeper into the territory of autism, I’ve thought perhaps this epidemic is teaching us to parent more creatively and effectively than the way we were parented. We cannot raise these beautiful children by controlling and “teaching” with fear, punishment and humiliation. Autism is teaching us we must regard and respect our children as who they are right now – responding to what they feel and know and don’t know and can and can’t do.

I’d like to tell you that Dan and Ben and Susan triumph in the end; but this book makes it clear that in the lifelong two-step with autism, no one takes home the trophy. They adapt by trial and error, luck and will, failure after failure and many small, precious victories. Above all, they come to love in a new way. This is the story of Saving Ben.

www.SavingBenBook.com

Bio: Sandra Williams, PhD, has been a professional editor and writer since 1976. Her essays, scripts, and teaching materials have won national and international awards. She is a theatre teacher and director and an Artist in Residence with the Oklahoma Arts Council, working with kids at risk. On the Web she is The Mushroom Lady. Sandra and her husband Doug own and operate Lost Creek Mushroom Farm and she is the founder and director of Mushrooms in Ghana Project. She is currently working on a book about the healing properties of edible mushrooms, including several that may impact health, communication and creativity for people with autism.

Filed in: Living with Autism

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