This guest post is from Stasia Ward Kehoe, author of the book "The Sound of Letting Go," which was released today that you can find here. Stasia holds a BA in English from Georgetown University and an MA in Performance Studies from New York University.
A neurotypical girl who loves to play music
An boy with autism who cannot stand loud noises
A family, caught between sound and silence, struggling to stay together.
How would you write the story of these people?
This was the challenge I faced writing my young adult novel, "The Sound of Letting Go". Many experts I contacted told me, “If you’ve met one person with autism, you’ve only met one person with autism.” Yet, despite the truth of this phrase, my research also uncovered an abundance of stereotypes about what it means to be or know a person on the spectrum. I found a dark space, a wall where definitions and distinctions ended. And, ultimately, I challenged myself to write a story about family living in that “ending” place.
I began with the stereotypes. Despite its removal from the DSM-5, “Asperger’s Syndrome” and the shorthand adjective “Aspie” have entered our lexicon. They describe people with autism deemed “quirky,” “nerdy” or “weird” who nonetheless manage everyday life: the kind of individuals neurotypicals likely encounter in schools or workplaces. In literature like Mark Haddon’s, "The Curious Incident of the Dog in the Nighttime" and Francisco X. Stork’s, "Marcelo in the Real World", they even solve crimes!
Another stereotype, “autistic savant,” suggests less mainstream folks who nonetheless have remarkable talents. You see features on savants, and on people with aspie quirks and savant-like intelligence, such as scientist Temple Grandin and musician Matt Savage, in documentaries and news programs. A silver screen equivalent might be Dustin Hoffman’s character Raymond in the 1988 film "Rain Man."
These stereotypes indicate that autism comes with redemptive attributes, and these autistic people can share their unique perspectives with the greater world. While this is often the case, an estimated 25% of people with ASD never acquire significant language ability and will never be able to live independently. For people on this end of the spectrum, tags like “aspie” and “savant” are identifiers their parents, siblings and caregivers wish they could use but never will. This is the dark space. The wall.
Stereotypes of autism can lead outsiders to question those who care for severely-affected people with autism. Why can’t you try intensive therapies, social stories, or specialized diets to help your child reach the point of Rain Man’s loveable Raymond? It is hard to think of stereotypes as impossible dreams, but sometimes they are. For one fourth of the people on the spectrum, no uplifting novel has been written. This is a thing that is hard to admit, hard to think about, hard to discuss.
My novel features a severely-affected character with autism: Steven, the brother of neurotypical teenager Daisy. Writing Steven was scary because he did not have any aptitudes that seem to make people more comfortable encountering autism. In my story, there is no deus-ex-machina to rescue Steven from his muteness, to make his parents less exhausted and afraid, nor to help Daisy truly understand her brother.
Is it all right to wish Steven wasn’t so violent? To wish Steven could tell others what he wanted? To wish someone didn’t have to stay home watching him and that the rest of the family could go to the movies together? Is it all right to wish Steven wasn’t there?
We all have guilty, unspoken wishes and fears. Families living with autism know this probably better than most. They combine these secrets with the endless stress of trying to balance caring for their autistic family member with the lives and future plans of everyone else. And, here’s another cliché for you: If you have met one person who cares for a person on the autism spectrum, you have met one caregiver. Being a caregiver can also be a dark place in which individuals can feel deeply alone.
I hope that, in The Sound of Letting Go I open a small door into a safe space that is not so lonely. I hope my words may helpcaregivers and families give themselves permission to express their thoughts and fears, to weigh these worries, and perhaps to have a conversation that needs to be had about a part of the autism community that is underrepresented—even in stereotypes.