In the twilight of our despair and sadness, we find the strength to overcome. It is that strength that pushes us back into the maelstrom, determined to find the will and the grace to help ourselves, our children and our loved ones. As parents on the Spectrum, kinship is what we offer each other. The support, advocacy and perseverance we give and receive are merely products of that. I look forward to reading this novel. -Ed
By Lisa Genova
I didn’t want to write about autism. Not yet. I’m a neuroscientist who writes novels, and as of today, we know frustratingly, embarrassingly little about the neuroscience of autism.
I looked through The Principles of Neuroscience, the core textbook, the neurological Bible of my graduate school days at Harvard in the 90s, and there’s no mention of autism. Not a single word. It’s not referenced, in fact, in any of my Harvard texts. The current research on gene expression, neurochemistry, neurophysiology, and circuitry is too early, not definitive, unknown.
Autism in 2012 is still very much in the hands of psychiatry and psychology, in nomenclature and behavior. How do we organize the symptoms? What should we call them? How do we manage them through behavior modification? Psychiatrists prescribe inadequate medications. Psychologists administer Applied Behavioral Analysis.
Our understanding of autism today is mostly limited to a discussion of restricted, repetitive behaviors and deficits in social communication. But what are the altered neural connections and molecules responsible for these symptoms? Neuroscience doesn’t yet know.
So as a neuroscientist, I wasn’t at all ready to write a novel about autism. But as it turns out, the novel was ready for me.
My cousin Tracey and I were both pregnant in 2000. She had twins, a boy and a girl, and I had a girl. We became new mothers at the same time, and it drew us close. We were together in our living rooms, kitchens, and backyards, sharing our exhaustion and joy, dreaming of our children growing up. We imagined it all. School plays, soccer and baseball games, prom, college. Of course, our daughters would be maids of honor in each other’s weddings. They would all be brilliant and beautiful, and we would be proud and happy.
But then, something wasn’t right with Tracey’s son. At first she thought he might be deaf. He wasn’t responding to her voice. But clearly, he could hear. He wasn’t talking like his sister or my daughter. I told her not to worry. Boys are often slower than girls to develop language. He wouldn’t play like or with our daughters. He wanted to watch Barney over and over. He wanted to be alone.
From our living rooms, kitchens, and backyards, I watched what happened next unfold, disbelieving, scared, heartbroken. I watched our girls skip effortlessly each year in the direction we had dreamed about as Tracey’s son struggled with each developmental step, landing each time somewhere entirely different, unexpected, unimaginable. I was there for early intervention, ABA therapy, floor time, picture exchange, special diets. Anything and everything that offered a way back to the boy we dreamed about.
Our children are twelve now. Tracey’s son has autism, and he is still mostly nonverbal. He can’t play on the baseball team, act in the school play, or say, “I love you.” In twelve years, we haven’t learned enough neuroscience to change his autism. But Tracey changed. We changed. In our living rooms, kitchens, and backyards, I still see and feel moments of anger and heartache, but the despair is gone. Most often now, I witness and feel acceptance and peace, the coalescence of new dreams for her son, different than the dreams for our daughters yet still full of meaning, pride, and joy. Where there was once terror and despair, I now see and feel unconditional love.
In 2009, I was on my way from Cape Cod to Logan Airport, leaving for a Still Alice book event in Denver. I’d just signed a new two-book deal with Simon & Schuster and was preoccupied with the entirely unknown subject of the second novel (I’d already begun writing Left Neglected). I closed my eyes in the back seat and meditated. I might’ve fallen asleep, but I don’t think I did.
Stephen King says that “stories are found things.” He believes they already exist, and the writer’s job is to excavate them like fossils from the earth. Elizabeth Gilbert poses that creative ideas come not from us, but through us from a magical, divine source.
After that ride to the airport, I see the obvious truth in both of these beliefs. When I arrived at Logan, I knew that my next book would be about autism. It would be about a nonverbal, autistic boy who died following a seizure. It would be about his mother who is searching for answers, for peace. It would be about another woman who is trying to make a decision about her marriage and the life she wants. It would be about the connection between these two women, finding the answers they need through the voice of a voiceless boy. The book would be about autism, but it wouldn’t be about neuroanatomy or genetics. It would be about the ways in which we’re all connected, how we’re all worthy of dreams. It would be about denial and despair, acceptance and peace. It would be about unconditional love. And the title of the book would be Love Anthony.