Imagine growing up and knowing there’s something wrong with you. You feel different; you are different. You’re fine physically, but socially you’re an outsider, alone and sad. Then imagine the relief decades later when a name is given to how you feel, and do, and act. Asperger’s Syndrome.
This mirrors the childhood of author John Elder Robison whose memoirs Look Me in the Eye and Be Different examined his life of knowing but not really and truly. His latest, Raising Cubby, is the realization that his own son has followed in his Asperger’s footsteps.
Lori: April is National Autism Awareness Month. What sort of misconceptions do you think the public has about autism?
John: One of the biggest misconceptions is that people tend to overlook the breadth of the autism spectrum. They see one autistic person and assume we are all alike. We aren’t. Some people with autism experience constant stomach troubles or sleep problems; others are perfectly healthy. Some of us have exceptional verbal abilities; others can’t talk at all. Some of us act just like anyone on the street; others have obvious impairments.
People speculate that some of the most successful people in the world – folks like Microsoft founder Bill Gates – are on the autism spectrum. At the same time, many people with autism are homeless, unemployed, or institutionalized.
There is as much diversity in autistic people as there is in the rest of the human population. Just hearing that someone has autism tells you very little about how they may look, act, or feel.
Why was it important for you to write Raising Cubby?
I’ve written two first-person accounts of living with Asperger’s, Look Me In The Eye and Be Different. In Raising Cubby, I wanted to show what it’s like raising a kid with Asperger’s. As a parent of a kid with special needs I know how the struggles can wear you down. Yet there is a fun side to any kid, and I wanted to show that to families today. I wanted to share our story in an entertaining and inspiring form, and to offer parents the answers to some of life’s great questions: How do you keep maternity nurses from swapping your baby with someone else’s? Where does Santa get Christmas coal? And where can you take your kid for a good adventure (I bet you didn’t think of hydroelectric power stations, but you’d be surprised)? All those questions – and more – are answered in Raising Cubby.
How much of your own childhood did you see in Cubby as he grew up?
Lots. As soon as Cubby was old enough to be with other kids in daycare I saw him sitting alone – not playing with the other tykes – just as I had done. I wondered if he was alone by choice or because he didn’t know how to engage, and I reflected on my own time as a little boy. Later, when Cubby became fixated on chemistry, I saw the same drive, focus, and passion that had taken me to the top of the music world with my own passion – electronics.
All of my life I’d seen my social failures, and assumed I was defective. – Elder Robison
You were around the age of 40 when you were able to put the Asperger’s name to why you were different. How did that make you feel to have that diagnosis?
I found it very liberating. All of my life I’d seen my social failures, and assumed I was defective. Finding out I was not defective – that I just had Asperger’s – was a huge relief. The knowledge of how I differ from most people allowed me to change my behaviors and find social success at last. That, in fact, is what led me to start speaking and writing about Asperger’s.
Most Aspergians my age grew up without a diagnosis. The Asperger diagnosis did not enter the language of mental health professionals in America till the mid-nineties, so anyone born in the fifties or earlier grew up in an undiagnosed, “free-range” state. The feeling that we were defective was very common as a result.
What is your writing routine? Are there challenges you face as a writer with Asperger’s? Advantages?
I don’t really have a routine. I either write in my office at my car company or in my library at home. At work, I’m interrupted constantly by staff and customers, and it’s hard to get anything done. At home I can get more done, but I have to remember that anything I print out might fall victim to our Imperial War Pug, who guards the house but has a fondness for manuscript paper.
How instrumental was your brother, author Augusten Burroughs, in getting you to begin writing?
I am eight years older than my brother, and taught him to walk, run, and read. Given that I knew how to write before any of that took place, I would say he was not instrumental at all. What my brother did do was write Running With Scissors, which exposed what I believed to be our shameful past for the entire world to see. The positive reception of his story gave me the courage to speak out myself.
You work with Beth Israel Deaconess Medical Center and other organizations in the pursuit of researching and sharing information about autism and Asperger’s. What is the latest news with regard to understanding the symptoms of autism and the ability to function in a world that is so complex?
I am a member of the Interagency Autism Coordinating Committee, the top-level autism committee of the U.S. government. One of the things our committee does is produce an annual summary of advances in autism research and understanding, and a list of pressing questions that remain to be answered. Rather than try to answer that complex question here, I encourage you to download and read our annual report. You can find the 2012 Strategic Plan for Autism and other valuable information on this website.
You describe yourself as a “world-class champion eater.” Can you elaborate? Favorite foods?
When I was in sixth grade I won the Shutesbury Elementary School Eating Contest by consuming seven plates of spaghetti. I will concede that there was another kid who out-ate me, but he threw up and was therefore disqualified.
Most of the time when I drink, it’s iced tea. I prefer fresh-brewed stuff from the Harney people, to be specific. They are masters at the art of catching wild teas and extracting the leaves as one might shear a sheep. When I eat, it’s fresh plants and fish, for the most part, with the occasional predator shot and tossed in the pot for variety. We grow our own vegetables here at home, in a well-lit and heavily defended garden in sight of the house. Fish are wild caught, at least while we still can.
Where is your favorite place to go hiking? Where does your mind go during this activity?
I like to hike where the animals have not mutated, and humans are still at the top of the food chain. When I hike, my mind goes out to the world around me, to sense the wonder of nature and hopefully pick up any threats before they consume me. Because the aminals (as Cubby used to call them) will take back the world. It’s just a matter of time.
Lori M. Myers is a New York-based award-winning writer and Pushcart Prize nominee of creative nonfiction, fiction, essays, and plays. Her work has been seen in more than 45 national and regional magazines, literary journals, and anthologies. Her plays have been produced overseas, in Canada, and across the US, three are published, and one was a Broadway World Award nominee. Lori has a masters in creative writing from Wilkes University and currently teaches at Dominican College in New York.