Author Margaret Combs Talks about the Impact of Autism on Families and Why We Need Memoirs More than Ever

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There are many wonderful family memoirs, but few tackle the subject of what it's like to have your family life impacted by the birth of a sibling with a disability. In her moving new book, Hazard: A Sister's Flight from Family and a Broken Boy, award-winning journalist Margaret Combs delivers an unflinching coming-of-age story set in the nineteen fifties and sixties—one with a remarkable perspective on autism and a great deal of heart.

In this interview, Combs tells us how she found the courage to write a raw family memoir, what it was like to make the leap from working in radio to writing a book, and the essential role that memoirs play in our culture today.

What gave you the courage and the impetus to make the leap from creating journalistic narratives to writing a family memoir so raw with emotion?

I knew from the beginning that I had to enter this writing differently. There are many nonfiction books out there about families, siblings, mental and physical disability, birth defects, which are geared toward connecting parents and families to helpful information and resources. (Thankfully, I might add–I wish my parents could have had those books.) What I felt was missing was the interior of a family going through this enormous upheaval and especially over the arc of a lifetime.

Disability does not end; though there are moments of triumph, it goes on forever, and in my brother’s case, gets more distressing and complex with age. I wanted to bring that side of the story out of the shadows. I developed courage through the writing process itself. More than anything I wanted to lean toward the emotion, and yet, as a journalist, I was conditioned not to do this. Fortunately, I was supported by a circle of writers whom I trusted and respected and they flagged me whenever I retreated into my journalism space – where it was much safer. I relied on them to ask for more, and above all, to help me tell my story with compassion – compassion for my parents, for our entire family, for all families who are going through this today.

How did you decide what shape to give your memoir? What was your process for getting the book to its final shape?

I didn’t start out knowing its shape, and for this I’m grateful. Memoir is a creative writing process. It’s not an expository writing process with a clearly defined outline and a march toward the finish line. In my experience, it’s more of a conversation that leads deeper into a part of the woods you’ve never visited before. Several times, I had to choose whether to follow it there, or to stop, turn around, and run back to safety. I ran in and out of those woods more than once, but ultimately went back in, fortified by the feedback and guidance of other writers. I started out believing I was writing a story about my brother. I hadn’t yet learned that it was a story about me. I started with a box full of journals that I had kept for twenty odd years, and went through each one, marking with a red tab every place I had written about my brother. He wasn’t the only recurring presence – other organic themes surfaced throughout – but he was a constant presence, and the tabs were the first visual proof I had of how much I carried him with me.

I lifted these journal entries out onto one long sheet of paper and they became the scenes that guided me forward. It was this sheet of episodes that I first took to my writers’ group. Some episodes developed into chapters, others became scenes and flashbacks that deepened the chapters. I relied on my sister, Barbara Ann, many times – she was an ally and could fill in the holes of my memory. I had a mentor, Brenda Peterson, who was leading my circle of writers and asking questions and steering me along, pulling me back when I strayed too far out into the trees.

The first chapter of my book is actually the outgrowth of an exercise that I did in one of Brenda’s memoir workshops. She asked everyone to write a scene that explained their entire life. My scene was the day my mother collapsed, a moment when life changed for me, and that became the starting point of my memoir. After I had several chapters and an annotated table of contents, I wrote a book proposal, presented it to some editors and agents, and happily, Sarah Jane Freymann took it on. But first she wanted me to ponder my ending and she actually asked me to go ahead and write the last chapter. I was so stumped that I attempted it several times, and then in frustration, took a long walk in the Grand Forest near my home. That is where I found my epilogue. The final refined shape of the book came together after the book was accepted by Skyhorse and I worked with my editor, Olga Greco. It was through her guidance that I put the final stitches in place. It was a long iterative process, with many surprises and epiphanies for me as a sibling and a writer.

Did you consider another way of telling this story? As a novel or film, perhaps, instead of a memoir?

I pondered writing it as fiction – partly to have more leeway in developing the story, and partly because fiction is beautifully safe – it protects the author in a way memoir cannot. I was very intrigued with Eli Gottlieb’s book, The Boy Who Went Away, which is a poignant and gorgeously told story about two brothers, one of whom is on the spectrum. At an awards event years ago, I asked Eli Gottlieb why he had chosen to tell the story fictionally – it was so intimately told, it read like a memoir – and he said simply, “It gave me more freedom.” Ultimately, I decided to write my story as I felt it and knew it, as a memoir, without distancing from it. It was the only way I felt capable of writing it. However, I wrote each chapter as if it were going to end up in the bottom drawer of my desk and never see the light of day. I needed that anonymity to reach the story, to drill down deep enough and stay with it, until I hit bedrock.

How have your skills as a memoirist been impacted by your work in other genres, such as radio? For instance, do you “hear” your language as you write, since you’ve written so much for stories that were meant to be audible?

Yes, absolutely, I hear the language. My time as an NPR reporter is when I learned how to tell a story, how to bring it to life, often with sound and ambiance. Sound is very emotional and intimate, and I hear it, even when I write an expository article or profile. I lay down the voices first, and then fill in around the quotes – similar to the way a radio script is created – allowing the voices to tell the story. With memoir, I hear two voices, one in each ear: one is emotional, the other factual, and the craft is to keep them harmonizing together. Facts by themselves do not tell a story, sensory details do. When facts overcome the paragraph, the reader is immediately distanced – the narrator may as well be a lecturer imparting information, or laying out a history textbook: this happened, then this, then this. The memoirist’s job is to ask why, what was the impact of these events, what do I know now that I didn’t know as a child, how do I recreate the emotional truth – how do I make sense of them in a way that not only makes sense to me but to the reader?

Portions of your book appeared in literary journals like the North American Review. Did you write the book that way, as a series of essays or sketches that just kept coming to you piecemeal? Or were you consciously writing a book all along?

Both, actually. I envisioned this as a book, simply because I felt it needed that length to bridge a lifetime. But I started with episodes, which grew into scenes, which developed into chapters. Each chapter had its own story arc, and sometimes that meant it emerged as a stand-alone piece – like “Mercy,” which appeared in the North American Review. I didn’t write the chapters intentionally as standalones. It can be done that way but if you’re not careful your book will end up little more than a string episodes. You have to ask, how is this chapter serving the overall arc of the book? How is it moving the narrator forward emotionally? Or are you just lining up scenes that keep rehashing the same emotion?

The narrator’s emotional growth is the plot of a memoir, more so than the events in the story. It helped me to map out an annotated table of contents early in the process, which helped me see the entire book all at once. As I progressed with chapters I began to see the arc of the story emerge. Once I saw that arc, I moved chapters and added new ones. I’m a visual person, so I printed out the TOC and marked it up mercilessly – and at one point I cut up the text and moved chapters around on my dining room table. It was a way of having a conversation with the book – to have it talk back and guide me.

We have so many ways to tell stories today, from podcasts to Netflix, from blogging to Instagram. What role do you think memoirs play in today’s world?

Memoirs play a vital role. More so today than ever before, in this culture of unprocessed emotion, talk radio, and the shouting of tweets. A well-written memoir processes emotion for the reader and offers wisdom and insight – it slows things down and both the author and reader journey together. The telling of our stories is how we connect as human beings, how we learn from each other, how we help one another gain wisdom and strengthen. It’s easy to pigeonhole people as stereotypes, to see them as “the other”, until you hear them tell their story. There is a deep and profound intimacy between the printed word and the reader. When a person reads, he or she is alone with the author, and there is no more intimate way to experience a story than one-on-one. Even an audiobook will interject a voice into the mix, usually not the author’s voice, adding a third person’s interpretation. There’s nothing wrong with any of these story methods. Movies can be powerfully moving, and so can radio pieces like NPR’s Storycore – we have many senses through which to take in story. But the printed word to me is the most compelling connection with the least number of people in the room – it plugs the heart and mind of one human directly into another’s.

Your memoir is as much a coming-of-age story during a certain time in American history, from the 1950s to the 1970s, when so much was changing in the political landscape (and for women especially) as it is about how your family coped with your brother’s autism. Why is your story still relevant today? What do you hope other families affected by children with autism might learn from you experiences?

My book spans several decades but it takes the reader right up to the present. So it is contemporary. My intention was to show the entire lifespan with all of the phases, rather than just focus on the beginning. The impact of a sibling with a severe mental or physical health issue extends well past the diagnosis, the early interventions and treatments, the tutoring, the difficult teen years when hormones awaken, the young adulthood when programs come to an end, when counselors say “we’ve done everything we can for him”, when one parent has to quite work to stay home with the disabled young man or woman, and when the parents pass on, the sibling(s) having to take over as parent.

As wonderful as it is to see all of the current early intervention and research on autism and support for young parents, I sense every family is still experiencing the emotions of my parents, the anxiety and worry, the shock of the diagnosis, and many a sibling is standing in the shadows, watching as their parents struggle with the emotional and physical demands of the one affected child. My hope is that my story can help families today in two ways: shed light on the profound way every member in the family is deeply affected, giving voice to those many moments when they feel baffled and alone, and secondly, to help mothers and fathers take a deep breath and remember their other children. Siblings are processing worry and concern by themselves, they’re trying not to rock the boat any further than it is already rocking, and they’re trying to make things better for their parents. They’re taking everything in and holding it close to their hearts.