MEET THE AUTHOR: LISA GENOVA

Love Anthony is a warm and compassionate tale about how to make sense of having an autistic child and finding love and meaning in a relationship that is almost completely one sided.

The Hoopla’s Books Editor, Meredith Jaffe spoke to author, Lisa Genova about her personal experience with autism and her plans for writing a new book on Huntington’s disease.

Meredith Jaffe: You have long been involved in issues surrounding dementia and Alzheimer’s, what led you to write this book on autism?

Lisa Genova: This book began with Anthony, a boy with autism who doesn’t speak, inspired by my cousin’s beautiful autistic son, Anthony. My cousin and I are close, and my oldest daughter and Anthony are the same age. We spent much of their baby and early childhood years together. So, as with Still Alice, this story sprang from a deeply personal place.

In the author’s notes, you make the point that when you began writing the book in 2010, 1 in 110 kids in the United States were diagnosed with autism and now, as the book is released, that incidence has risen to an alarming 1 in 88. In your journey writing Love Anthony, did you become any the wiser as to why autism levels are so high?

We know that more awareness, both on the part of parents and physicians, has contributed to the increase, so more cases are now detected that would’ve gone undiagnosed or labeled something else. Older parental ages have also been correlated with an increase in the incidence of autism.

Yet better awareness, better diagnostic practices, and older parents don’t entirely account for the increase. Interactions between environmental factors and genetic predispositions not yet understood are thought to underlie the remaining reason for the rise in autism.

The Anthony of this story is diagnosed with autism at age three. He hates being touched, does not make eye contact and does not speak. As an author, and as a mother, how did you go about immersing yourself in his world?

I did a lot of research for this book, reading everything I could, interviewing the medical community, and talking in great detail with families who live with autism. After I learned as much as I felt I could, the goal in writing the story then becomes to tell the truth under these imaginary circumstances, to crawl inside that little boy, to inhabit his thoughts and senses and emotions.

You met many people who were parents of autistic children in the writing and research of this novel, what stayed with you from that experience?

When I think about those conversations, I’m still overwhelmed with gratitude. These parents were so open, so willing to share the most uncertain and vulnerable parts of their lives and their children with me, not knowing how I might use that information. They gave me an enormous amount of trust. I never took this lightly. In addition to teaching me about autism, they taught me lessons in compassion, acceptance, resilience, and unconditional love.

The two women in this story are Olivia, Anthony’s mother who comes to Nantucket to be alone with her memories of Anthony beyond the glare of friends and family’s pity, and Beth, a Nantucket local who has just discovered that her husband has been having an affair with a much younger woman. What prompted you to structure the story around their relationship, to tell Anthony’s story in this way?

This was the intention from the beginning. I did this for a few reasons. One, both for the child who has autism and for the families who love and advocate for them, autism can be incredibly isolating. When I talked with parents and professionals who know autism, I repeatedly heard the same words–isolated, disconnected, solitary, alone. While isolation is a very real aspect of living with autism, and I certainly needed to portray this in the book, I wanted to show people connecting (lives intersecting) through autism.

Second, much of the focus on autism, especially among people who aren’t all that familiar with it (like Beth at first), is on all the ways that autistic children are different from typical children. The focus is on what is strange or abnormal or even tragic. Again, that is there, but I also wanted to shed light on what is the same among all of us, whether you have autism or not. How do we connect as human beings with each other? Are we all capable of this? What happens when we can’t or won’t or give up on connecting? What happens when we find a way to truly understand and accept each other?

I actually tried to change the structure many times. I tried writing the story without Beth or without Anthony’s seizure, but it never worked. Stephen King says that stories are found things, that they already exist, and it’s the writer’s job to excavate them like dinosaur bones from the ground. This is how Love Anthony felt to me while writing it.

What are hoping readers will take away from Love Anthony?

I hope that readers who already know autism feel that I got it right, that while every person with autism is different, that I captured some of what they experience in this book. And maybe that helps them feel acknowledged and less alone.

For readers who don’t know autism, I hope they gain a better understanding of it. When we hear the statistics (1 in 88) or when we learn about the DSM reclassification or the scientific research, the information tends to stay in our heads. It’s important and necessary knowledge, but there is more to understand.

In Love Anthony, readers get to learn about HUMAN BEINGS living with autism, and what we learn then also lives in our hearts. Then we have more than knowledge. We have empathy and maybe the motivation to get involved, the inspiration to make a positive difference.

I hope Love Anthony breaks through some of the stigma and barriers surrounding autism by creating an opportunity, through fiction, for people to see and feel the ways in which we are all connected and worthy of unconditional love.

What is your next project, are you working on new fiction?

My next novel will be about a genetic neurodegenerative disease called Huntington’s.

On a not so serious note, what’s so special about Nantucket that you wanted to set the story there? Or was it just an excuse to visit there frequently?

I wanted the book’s setting to reflect the isolation that is so characteristic of autism and that is felt by both main characters in the beginning of the story. I also needed a small community, a place where that isolation can be broken and lives might intersect and see the possibility of real connection. Island life seemed to fit this bill. I live on the elbow of Cape Cod, 30 miles of ocean away from Nantucket. So although it’s a remote place, Nantucket is actually pretty accessible for me.

I spent a lot of time “on island,” walking the beaches, eating Aunt Leah’s fudge, interviewing people who live there (natives, summer people, and wash-ashores). I hopped the high speed ferry from Cape Cod to Nantucket as many times as I could while I wrote Love Anthony. Tip—you cannot rent a car, moped, or bicycle in January on Nantucket.

You can read Meredith Jaffe’s review of Love Anthony here, and read an extract of the book here.

*The Hoopla’s books editor Meredith Jaffe is a book reviewer and blogger. She lives in Sydney with her husband and four children. You can follow her on Twitter: @meredithjaffe.