In honor of National Autism Awareness Month, we asked novelist Hari Kunzru—whose new novel Gods Without Men centers around the disappearance of an autistic boy—to share his observations about autism and how the disorder is portrayed in art.
My latest novel, Gods Without Men, is set in the Mojave Desert, and deals with the unexplained disappearance of a four-year-old boy called Raj. He’s profoundly autistic: non-verbal, incontinent, resistant to being touched and hugged, frightened of loud noises. Much of the novel concerns the challenges that his condition poses to his parents, whose already-fragile relationship is put under great strain.
Autism has become a popular trope in fiction and film. From The Curious Incident of the Dog in the Night-Time to Rain Man, we’ve become used to a version of this condition that emphasizes savantry and a sort of poetically ”Martian” vision of the world – like the alien in Craig Raine’s poem ”A Martian Sends a Postcard Home” who sees earthly phenomena for the first time and says beautiful things like, ”Rain is when the earth is television / It has the property of making colors darker”. Autism has become associated, in popular culture, with mathematical and engineering genius. The son in the new Kiefer Sutherland vehicle “Touch,” who displays many autistic traits, actually turns out to be a creature with supernatural powers of connection and prediction. What gets lost in all this storytelling is the reality of caring for a disabled child, who is perhaps not a savant, or given to touchingly odd descriptions of the world, but may have seizures, tics, trouble sleeping through the night, fits of rage, or a host of other troubles. I wanted to write a portrayal of a family dealing with this far-from-glamorous reality.
I should say that I’m not (yet) a parent, and no one in my close family has autism. However, I’ve seen up close how my brother’s disability (he has the eye condition retinitis pigmentosa, which has left him blind and learning-disabled) has affected everyone in our family. Recently, a niece was born with a club foot, cleft palate, and a host of related conditions, and I’ve watched her parents struggle heroically to care for her and give her the best chance in life. Yet for all parents of disabled children, some level of guilt is part of the package. Inevitably, they find themselves asking if they could have done anything differently during the pregnancy, or if they could be doing something more to improve their child’s situation. This guilt can be incredibly toxic, and in some families it’s complicated by religious and cultural beliefs which suggest that disability is a ”punishment” for past actions, or is related to transgressive actions such as marrying outside one’s caste or community. In Gods Without Men, Raj’s parents, Jaz and Lisa, have done precisely this. Jaz comes from a rural Punjabi Sikh background, and Lisa is a secular Jew. For Jaz’s superstitious family, Raj’s condition is proof that someone has put “the evil eye” on him. Floating around this is the suggestion that Jaz has caused this by repudiating his religion and marrying a non-Sikh.
Gods Without Men revolves around a series of mysteries, and for Raj’s parents there is no greater mystery than their child: they are trying to love and care for him, but in the face of his profound non-communicativity, they feel like failures. His disappearance out in the desert changes them deeply, forcing them to ask questions about their own beliefs. The lack of understanding about autism leaves caregivers particularly vulnerable to quackery. The desperate hope for a cure leads people to become prey to unscrupulous peddlers of miracle cures, as well as sincere but misinformed proponents of medically null stories about possible causes of the condition. Lisa, Raj’s mother, tries such things as chelation and special diets, and gets angry that her skeptical husband isn’t supporting her. One has only to look online at the vehement arguments about such topics as the mercury preservative in vaccines to see how anger and frustration at being unable to solve their child’s problems leads parents to sublimate their hopes for a cure into quasi-religious beliefs in the efficacy of a particular therapy.
As a novelist, I don’t write for polemic reasons, and in the end Gods Without Men is just a story, but writing it has led me to a better understanding of the issues that face caregivers of disabled children. I hope that it finds readers who feel the same.
Learn more about Hari Kunzru