Autism was my gift to you. My autism didn’t let me hug and kiss you, it didn’t allow me to look into your eyes, it didn’t let me say aloud the words you so desperately wanted to hear with your ears. But you loved me anyway.
You’re thinking, Of course I did. Anyone would have. This isn’t true. Loving me with a full and accepting heart, loving all of me, required you to grow. Despite your heartache and disappointment, your fears and frustration and sorrow, despite all I couldn’t show you in return, you loved me.
You loved me unconditionally.
You haven’t experienced this kind of love with Dad or your parents or your sister or anyone else before. But now, you know what unconditional love is. I know my death has hurt you, and you’ve needed time alone to heal. You’re ready now. You’ll still miss me. I miss you, too. But you’re ready.
Take what you’ve learned and love someone again. Find someone to love and love without condition.
This is why we’re all here.
Love,
Anthony
AUTHOR’S NOTE
As of the writing of this story, the neuroanatomical, neurochemical, and neurophysiological underpinnings of autism are poorly understood. While I look forward to the day, hopefully in the near future, when scientists have identified the causes, elucidating the neuroscience of autism wasn’t the goal or within the scope of this novel.
About a third of children with autism also have epilepsy. For most of these children, seizures can be well managed with medication. However, managing the proper dosing and effectiveness of any medication with children who are nonverbal is particularly challenging.
Boy with autism or autistic boy? The specific use of language can powerfully influence how we perceive and treat people. I have read and understand the arguments for both choices here.
Boy with autism—the focus is on the person. The boy is a person first, not defined by and only by autism. On the other hand, boy with autism can be perceived to treat autism like a disease, like describing a person with Alzheimer’s or a person with cancer. It can be perceived as something negative, a malady to cure.
Autistic boy—the argument for this language asserts that autism is a trait to be accepted. It is part of the person, like being brown-eyed or blond.
Seeing the merits of both sides, I consciously used both ways of referring to autism in this book, as they are used in today’s culture, aware of this ongoing discussion, respectful of both opinions.
When I began writing this novel in 2010, the incidence of autism in the United States was 1 in 110 children. A report released by the CDC in March 2012 states that the rate has risen to 1 in 88.
This is a fictional story about a boy on the autism spectrum. Over and over, I read and heard this statement from parents and professionals:
“If you’ve met one child with autism, you’ve met one child with autism.”
Anthony, the fictional boy in this novel, is one child with autism. While he cannot possibly represent all autistic people, I hope that through the story of Anthony and his mother readers will gain an insight and sensitivity that can be extended to every person with autism.
After talking with parents, physicians, and therapists and reading as much as I could about autism for the past two years, here’s what I’ve come to believe:
The spectrum is long and wide, and we’re all on it. Once you believe this, it becomes easy to see how we’re all connected.
ACKNOWLEDGMENTS
First, I need to thank all the amazing parents who so generously shared their experiences with me. I can’t thank you enough for opening your personal lives to me, for teaching me what you know about autism, and for trusting me with this knowledge. I know that what you gave to me is extraordinary. Thank you Tracey Green, Kelly Gryglewicz, Kate Jacobson, Jackie Maust, Susanna O’Brien, Holly Shapiro, Ginger Shephard, and Jim Smith.
Thank you Dr. Barry Kosofsky, one of my first teachers, for your insights as a pediatric neurologist and for describing the current scientific and medical understanding of autism. It was great to learn from you again.
Thank you Corinne Murphy Genova, MEd, BCBA, for your insights as an applied behavioral analysis specialist.
Thank you Jennifer Buckley and Reine Sloan for your generosity, for helping me better understand what happens before, during, and after seizures. Thank you Dr. Jessica Wieselquist for explaining the clinical perspective.
Thank you to Jessica Lucas for sharing her expertise as an emergency medical technician.
Thank you to everyone who helped me come to know and love the quirky and beautiful island of Nantucket: John Burdock, Sarah Crawford, Michael Galvin, Dr. John Genova, Wendy Hudson, Tina and Richard Loftin, Jacqueline and Vincent Pizzi, Nancy and Peter Rodts, Susan Scheide, Dr. Louise Schneider.
Thanks also to Anne Carey, Sue Linnell, and Christopher Seufert for accompanying me on various trips to the island.
Thank you to Father Jim Hawker for providing information about the Catholic Church.
Thank you Mary Ann Robbat for sharing your insights about channeling.
Thank you Addie Morfoot Kauffman for helping me to imagine the details of Beth’s professional life in New York City prior to moving to Nantucket.
Thank you Jill Abraham for role-playing a pivotal scene with me at Starbucks (Jill was Petra, I was Beth).
Thanks to my baristas and good friends at Starbucks for guarding “my seat” and for providing me with all the chai tea lattes I could drink: Lauren Fowler, Desiree Gour, Brandon Lopes, Erin McKenna, and Mary Trainor.
Thanks to Ann Hood for the glorious writing retreat at Spannocchia.
Thanks to the Peaked Hill Trust for the truly amazing artist residency in the Margo-Gelb dune shack in Provincetown.
Thanks to Danyel Matteson for providing me with the opportunity to spend some uninterrupted time writing in a stunning room at the Chatham Bars Inn.
For the time and space to write this book, I thank my parents, Mary and Tom Genova; my in-laws, Marilyn and Gary Seufert; Sue Linnell; and especially my husband, Christopher Seufert.
For reading each chapter, for sharing this journey with me, and for the many needed pep talks along the way, I thank Vicky Bijur, Anne Carey, Laurel Daly, Kim Howland, Mary MacGregor, and Christopher Seufert.
Thank you to my incredible team at Simon & Schuster for believing in this story—Kathy Sagan, Jean Anne Rose, Ayelet Gruenspecht, Anthony Ziccardi, Jennifer Bergstrom, and Louise Burke.
Thank you to Vicky Bijur and Kathy Sagan for reading and rereading, for your invaluable insights. This book is infinitely better because of your input.
Thank you to Chris, Alena, Ethan, and Stella for your love and patience.
Finally, I thank Tracey Green. Thank you, Trace, for trusting me to write this story. I wrote this book for you, with all my love.
READERS GROUP GUIDE
LOVE ANTHONY
by Lisa Genova
Book Summary
Love Anthony is the latest novel from the award-winning, New York Times bestselling author of Still Alice and Left Neglected, about an accidental friendship forged between two women on a Nantucket beach; a friendship that provides peace to one, validation to the other. Olivia is a thirty-something mother whose eight-year-old, nonverbal autistic son has recently died. With her marriage badly strained by years of stress, she has come to the island recently separated, trying to understand the purpose of her son’s short life. Beth, a stay-at-home mother of three already living on Nantucket, is also recently separated, after discovering her husband’s infidelity. In an attempt to recapture a sense of her long-lost independence, Beth rekindles her passion for writing, determined to discover her identity again. But surprisingly, as she uncovers her own voice, Beth also finds herself channeling the voice of an unknown boy, a voice that will give both women the comfort and answers they need.
Questions for Discussion
1. How much did you know about autism before starting Love Anthony? Do you know anyone who has auti
sm or an autistic person in their family?
2. What significance does the setting of Nantucket play in this story? Would the story have been different if it had taken place in New York City or Chicago?
3. Beth pulls a box out of her attic, filled with remnants from her old life, and is reminded of the woman she once was. If you were to go through a box from your attic, what items might you find?
4. On the subject of marriage and fidelity, Beth’s friend Courtney muses: “You’re always at the mercy of the people you’re in a relationship with, right?” you agree? What do you think of the advice she offers Beth?
5. Do you think the author accurately captures the voice of a young autistic boy in the Anthony chapters? Did these sections enhance Beth’s story for you? What about Olivia’s journal entries?
6. After receiving David’s letter about his impending engagement, Olivia ponders the concept of happiness: “He’s right. She forgot about happiness. At first, it wasn’t a priority. Anthony had autism, and every ounce of energy went into saving him. Her happiness was irrelevant.... And then, just when she was starting to realize that happiness and autism could coexist in the same room, in the same sentence, in her heart, Anthony died, and happiness was no longer a concept she could fathom.” Do you think happiness is a conscious choice? Do you find it telling that Olivia uses the phrase “saving him” in reference to Anthony and his autism?
7. Toward the end of the story, Olivia has an epiphany when she realizes: “There was more to Anthony’s life than his death. And there was more to Anthony than his autism.” What do you think finally enables Olivia to have this realization? Was it a singular event or a process?
8. When Jimmy and Beth share their homework assignments given to them by Dr. Campbell, were you surprised by Beth’s initial reaction? Why is forgiving Jimmy the one thing Beth can’t do?
9. After reading Beth’s novel, Olivia is convinced Anthony is speaking to her through Beth. Skeptical, Beth discusses the idea with the more spiritual Petra, who feels “we’re all connected, even if we don’t know how. Maybe communicating through you gives you the something you need in this lifetime.” Do you agree or disagree with Petra?
10. Through writing her book, Beth realizes: “This story was more about Anthony the boy than Anthony the boy with autism.... She was simply writing about Anthony, a boy worthy of happiness and safety, of feeling wanted and loved. Just like her. The more she wrote about Anthony, the more she realized that she was actually writing about herself.” How so?
11. Beth ultimately decides the lesson of her book is “Find someone to love and love without condition.” Do you think this could also apply as an overall theme for Love Anthony? What about other themes?
12. Which character did you relate to the most, and why? Where do you see these characters in five years?
13. What do you think of Beth’s epilogue? Do you think it provides a satisfying ending to her story? To the novel as a whole?
14. Another recurring theme of Love Anthony is faith—having faith, losing faith, and taking a leap of faith. Can you remember a time in your own life when you took a leap of faith?
Enhance Your Book Club
1. Visit the website http://www.autismspeaks.org to learn more about autism and different fundraising or awareness-raising events your book club can participate in.
2. The author is a keen public speaker and tours often with her books. Check out the author’s website to see if she’s speaking near you: http://lisagenova.com/.
3. When out at Salt with her friends, Jimmy makes Beth a special drink—a Hot Passion Martini. Why not concoct a signature drink (with or without alcohol) for your book club gathering? Invent another Nantucket Knockout.
A Conversation with Lisa Genova
You have said that Oliver Sacks, along with your grandmother’s struggle with Alzheimer’s inspired you to pen Still Alice. Was there a particular person in mind when you started Love Anthony?
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.
What kind of research did you undertake for this novel?
I did a lot of research on autism for this novel. I read as many books, blogs, and research articles as I could both before and while writing Love Anthony—from fiction to memoir to clinical texts. A list of the books I read can be found at my website. I interviewed physicians, behavioral therapists, an EMT, and people who’ve experienced seizures. The most important research involved talking with parents of children (age 3–17) with autism. These conversations were intensely personal, raw, honest, and generous. I can’t thank these parents enough for what they shared with me.
I also spent a lot of time researching the island of Nantucket. This involved reading many books about the island, interviewing people who live there (natives, summer people, and wash-ashores), and hopping the high speed ferry from Cape Cod to Nantucket as many times as I could throughout the year.
Did you intend to make it a two-fold story (two characters whose lives intersect), or did that come organically?
This was the intention from the beginning. I did this for two reasons. First: Both for the child who has it 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?
You have your degree in biopsychology and a PhD. in neuroscience. How has your education influenced your writing?
Neuroscience continues to be the first and foremost influence on what I’m interested in writing about. I’m definitely still a nerdy girl who loves learning about how the brain works. I love that I get to weave this passion for neuroscience into the stories I tell as a novelist. I get to ask the questions I care about most, questions about the brain and the bigger questions about life, and then try to answer them as best I can through stories. I’m a lucky, nerdy girl!
What part of the writing/publishing process do you find the most challenging—the researching, actual writing, editing, or public speaking at conferences and on book tours?
I honestly love all of those aspects of being a writer, even (and especially) the challenges. I think the most challenging part is when I have to do all of these at once! For example, many times in the past year while traveling on book tour for Left Neglected or on a speaking tour for Still Alice, I would read a book about autism on the plane and then write some of Love Anthony in a Starbucks (Sydney, London, Montreal) before having to give a talk about Alzheimer’s or a book event about Left Neglected. So on any given day, I might be writing about Olivia and Anthony and autism but also talking about Alice and Alzheimer’s or Sarah and Left Neglect.
How was the experience of writing Love Anthony different from that withyour two previous novels, Still Alice and Left Neglected?
When I was writing Still Alice and Left Neglected, I always felt like I could lean on my neuroscience background when I needed it. I could go to the textbooks and the medical community for scientific information about Alzheimer?
??s or Neglect and traumatic brain injury, and, as a fledgling writer, I found this comforting. With Love Anthony, I was very much aware that I was writing without this safety net. There is no neuroscience textbook on autism. And the structure of this story is far more complex than my previous two books. With Still Alice and Left Neglected, I was a neuroscientist writing a novel. With Love Anthony, I became a novelist.
Can you read other writers while you are working on a book, or do you take a sort of “media-blackout” approach?
I’m always reading, typically two or three books at once. While writing Love Anthony, I was always reading a book about autism—The Siege, Born on Blue Day, Making Peace with Autism, A Regular Guy, The Way I See It, Son-Rise, Thinking Person’s Guide to Autism. But I was also usually reading a novel or a memoir unrelated to autism. Right now I’m reading Mapping Fate, One Hundred Years of Solitude, and Maine.
With Still Alice, you raised awareness to the insidious disease of Alzheimer’s, and in Left Neglected, you shed light on traumatic brain injuries. Is it your hope that Love Anthony can do the same for autism?
Absolutely. Scientifically and clinically speaking, we’re only beginning to understand what autism is. Most physicians were taught essentially nothing about it when they were in medical school. So in 2012, we’re in the infancy of elucidating the neuroscience of autism. Yet 1 in 88 children are on the spectrum. And each one of those children has a mother, a father, grandparents, siblings, cousins, neighbors, teachers, student peers, friends—people who are touched by autism, connected to it, and need some better understanding of what it is. I hope that Love Anthony can contribute to an increased awareness and a much-needed, better understanding of autism.
What are you working on next?
My next novel is about a genetic, neurodegenerative disease and fate.