Autism and Acceptance: Lisa Genova on Her Book, "Love Anthony"
I have low expectations for novels about autism, as the autistic characters in popular books like Rules, House Rules, and The Curious Incident of the Dog in the Night Time are portrayed so negatively -- as inscrutable, unpredictable, unreasonable tyrants around whom fractured, exhausted, resentful families revolve. Those stories do no show my reality -- I adore my autistic son, and our family life is generally happy. So you can imagine my relief in discovering that Lisa Genova's new Love Anthony carries a forthright message of autism acceptance.
Love Anthony tells the intertwined stories of two contemporary Nantucket women struggling with parenting, loss, and the meaning of unconditional love. It is the perfect book for anyone who could use an introduction to autism, but prefers fiction over nonfiction. I spoke with Lisa, and here's what she had to say about her book's origins, her own experiences with autism, and what she hopes this story can accomplish.
Shannon: As an autism parent, I really appreciated reading Love Anthony, because I've never quite read anything like it before -- certainly not a mainstream book that promotes any kind of autism acceptance. Was promoting autism acceptance a goal?
Lisa: That was a goal of the book -- to take autism and bring it beyond the boundaries of the autism communities. You've learned so much in your journey to acceptance and understanding, and knowing how to live in a way that has peace, joy, love and all the good things. But people who don't have a child with autism, or who are outside the communities, just don't understand autism and are afraid of it, and have all kinds of judgment. So the families stay separated and isolated. I'm hoping that this book can help bridge some of those gaps, and connect us all -- we have more in common than our differences.
Where did the idea for your book come from? Do you know someone who is autistic?
Yes, I know someone really well. Like my first book Still Alice, which was inspired by my grandmother and so came from a deeply personal place -- this also came from a deeply personal place. My cousin Tracy is like a sister to me, and we were both pregnant at the same time with our first children -- me with a girl, her with boy-girl twins. They were born five weeks apart. We lived near each other, so we spent at least two days each week in each other's living rooms during that early parenting haze. We spent our whole first year talking about how our daughters would be each others' maids of honor, our kids will grow up together, and her son Anthony as going to play little league and be a great ball player like his dad, etc. -- all the things you dream about.
At about ten months, Tracey started getting worried because Anthony wasn't talking, stopped using a spoon, started staring at the walls, and wasn't playing like the girls were. And I said, "Don't worry, he's a boy, girls are so much more social, boys are slower to talk, language development is different in all kids." So then [Tracy] thought "I think he's deaf!," but we did experiments and saw that while he reacted to sound, he didn't react when she called his name. She was really on his development from a very early age. And then when he was 16 months old, there was an article in Time about autism, and she read it, and she said, "Oh my god, that's it -- that's what this is!
So I was there, I witnessed her first concerns, her denial, and the difference between her denial and that of her husband. Anthony was formally diagnosed at age three, but before that there was early intervention and so Tracy was stuck in the house because she had to be there during the therapies. Just witnessing all it took in terms of the emotional resources and the financial resources -- she had people in the house at least 35 hours each week. I witnessed Tracy go through all those stages of grief -- the rage and despair, and I was heartsick right along with her.
But Anthony's 12 now. He's still non-verbal, but at this point there's more acceptance and peace, though there will still be those days when Tracy's emotions flare up: "Why me, why'd it have to be like this, this is too hard…" but mostly what I see in her is a beautiful unconditional love, where she loves this boy for who he is and wants him to have the best life possible, given what he's capable of and what makes him happy. It's a humbling, beautiful journey if you can look at it that way.
I don't think most people are truly asked to love someone unconditionally. I see parents all the time who aren't speaking to their children because they don't like the decisions those children have made as adults, or husbands who cheat on their wives and then the marriage is over. And no judgment on any of that -- I just think it's really hard to love someone unconditionally.
When we have typical kids, our love is reciprocated in a way we were raised to understand -- my two year old is running around right now, pretending to be a dog, and it's really easy to love her: I hug her and she hugs me back and she looks me in the eyes, and she smiles, and she plays with me, and I get that feedback from her. But if you've got autism and its way of expressing and feeling love are different, it can be hard to experience those connections we're used to feeling with each other.