Love in the Time of Autism: A Sister’s Story

03/26/2017 06:29 pm ET Updated Mar 31, 2017

A great memoir, like a great novel, has the power to crack our hearts open, teach us about loss and resilience and what it means to be human. Former NPR reporter Margaret Combs’s new memoir, Hazard: A Sister’s Flight from Family and a Broken Boy, is such a book.

It’s the story of a sister’s struggle in a family shaped by fundamentalism and the limitations of a profoundly disabled son. Of a young girl, coming of age in the tumultuous 1960s and 1970s, who longs for the freedom she sees in the world around her. Combs must put distance between herself and her family to realize the full destiny that’s been denied her brother. Her years away bring a deeper appreciation for her parents—and new insight into past events.

Hazard begins on the day in September 1957 that Combs’s family discovers there is something very wrong with her younger brother, Roddy—whose symptoms won’t until much later be identified as autism. Combs’s description of the pall that descends over her family as the reality of Roddy’s disability sinks in is heartbreaking.

As their parents cope with despair, young Margie and her big sister, Barbara Ann, like good girls in stressed families everywhere, do everything in their power to make things better. Margie is a compassionate girl who encourages Roddy to learn—to protect him from the cruel judgment of the outside world. She works at making her parents proud, excelling at school and doing her best to behave at church despite long sermons, scratchy petticoats, and hard pews.

This lovingly crafted memoir is Combs’s. But it’s also, inextricably, the story of a young couple who, through hard work and clean living, transcend their humble beginnings in rural Kentucky. Of good, loving parents pushed to the breaking point by an event so devastating that their lives will never be the same—and who persist when so many others fall apart. It’s the story of Barbara Ann, the author’s treasured ally, and of course, of Roddy, and his unique way of being in the world.

At home, her brother can spend hours lining up his Hot Wheels and Tonka trucks in perfect lines or make contented washing machine sounds: “hissing at first, then a low chugging in his nose, tongue thrubbing far back in his throat, followed by a shush shush shushing and a whispery trail of rrrs, and, finally, a whiney yi yi yi yi yi, meaning he’d come to the spin cycle.” But in public, when overstimulated, he erupts “into a fit of flapping, twitching, and frightening barks.”

When she overhears her mother confide in Barbara Ann, “All I ever wanted was a happy family,” it dawns on Margie that her family isn’t happy. She finds ways to escape: at friends’ homes where she can run and be silly; by scaling the tall cottonwoods in her yard to swing limb to limb or settle in with a book and a snack.

As she grows, Margie begins to question her parents’ perceptions: their belief that Roddy’s disability is part of God’s plan and not to be questioned; their horror when JFK, a Catholic, wins the White House; her mother’s insistence that animals don’t have souls because they’re not made in God’s image; her father’s fury when he catches her listening to Nat King Cole.

She learns to hide her diverging beliefs and little rebellions from her parents the way she learned, early on, to hide her feelings when people stared at her brother. She listens to rock and roll on her transistor radio, the volume turned down low, feeling “. . . like a sinner, and at the same time, good and alive.”

Combs’s portraits of Roddy are especially moving, as is her outrage at the life he’ll never have. She overhears him, at 12, weeping as he tells their mother that he wants a friend, just having witnessed Margie and Sherry, her fellow cheerleader, horsing around on the back lawn.

More than any other disappointment in his life, this one would break my brother. He would turn ever more inward, so thoroughly that he would never cry again.

She questions “a God who gives a boy enough understanding to know what he is missing, to see and feel what he can't have, and who denies that boy this simple happiness.”

When Margie finds her passion—gymnastics—she discovers a way to transform her mother’s sadness to smiles, and “an escape route to another life.” Combs is a master storyteller, and Hazard is filled with vivid scenes depicting her challenges as she carves out a career and a life with children of her own—and the powerlessness she feels when faced with her brother’s confounding disability.

On a family road trip to Hazard, Kentucky, 33-year-old Rod erupts over lunch, his tantrum capturing the appalled attention of the entire diner. Combs, having been away for years, wonders how her parents stand it, and admits to being “buckled by the relentlessness of my brother’s struggle and the impossibility of peace.” Then later, she tells how Rod, at 52, so treasures the Valentine she’s sent that he takes it to bed with him.

Combs writes that Rod has lived far longer than the doctors predicted, which means that someone is going to need to take over his care from Combs’s aging parents.

I wasn’t certain I had enough stamina to manage my own aging, much less my brother’s. Did I have enough love? After my parents were gone, caring for my brother would be a full-time, nonstop job, without respite.

What does a person owe her family and what does she owe herself? one wonders. In answer, Combs has penned an exquisite, unflinching memoir that illuminates the challenges faced not only by parents of a profoundly disabled child, but also by his siblings. And within the intimate portrait of her family as well as the story of her flight from and return to it, Combs delivers a testament to love.

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