As the mother of a young adult on the autism spectrum I am grateful for this month’s effort to spotlight this ubiquitous neurological disorder. But I hope more than t-shirts, wristbands, marches and calls to wear blue, the biggest take away is an understanding of its complexity – and a heightened sensitivity to the challenge and joy of difference.
Just like the rest of the population, no two people with autism are alike. Autism claims a host of renowned scientists, artists, writers and musicians. Bill Gates suggests in his recent biography that as a child he would have likely been diagnosed with autism.
On the other end of the spectrum, there are people with autism who lack the language skills to speak, the motor skills to care for themselves, the sensory skills to self-regulate, and the cognitive skills to navigate the world alone.
My daughter, Erin, falls somewhere in the middle of the spectrum, but closer to the second group.
While I and those who love her perceive moments of uncanny recall and insight, she struggles with everyday tasks. When she was two, my father-in-law, trying to wrap his head around her diagnosis, wondered if she might one day be able to walk to the corner and buy herself a cup of coffee. I had no idea, but I hoped so.
Erin will always need someone to help her navigate the world. At one time this reality would have felt cataclysmic. Today, possibly due in part to months like this, it’s just the way it is and it’s ok. It’s more than ok.
Parenting a child with a disability is a process of trial and error, opening every door and window to find therapies and solutions, setting goals and pivoting, hoping for one thing, readjusting, learning to redefine hope. Today, I hope the world will be kind to Erin.
I recently compiled a collection of essays about Erin and our family. Reading through my stories about a mom discovering and navigating an unexpected world of difference, two themes surfaced again and again: joy and gratitude.
Erin has taught us to appreciate and to celebrate small things many take in stride: we must pause before getting into the car to listen to birds “tweeting,” this morning’s chocolate muffin elicited a round of applause. Erin actively seeks out moments of joy.
Her enthusiasm is contagious, only eclipsed by my gratitude for the people who have helped us get this far. Some days they are people we know well – doctors, caregivers, friends. Many days they are strangers who offer patience, kindness, a smile.
Last fall in an effort to garner job and social skills training, Erin (and I) took on the task of delivering our town newspaper to local businesses. Many stops turned into a small celebration as Erin bounded into each store with her bag of goods. Barbers, bank tellers, restaurant and bookstore owners reached for lolli-pops, stickers, pens – something they could give back as she handed them their paper.
As I watched this exchange and instinct to give and to give back play out again and again, I felt like I was getting to see behind a curtain, that this is what we are wired to do, how we are wired to be. I often feel that way with Erin. She barrels in, breaks down the façade, and begs people to be themselves – open, welcoming, kind.
However brief – an encouraging nod, a word – a reply to her endless question – “What is your name?” – means more than anyone could ever know.
So to celebrate Autism Awareness Month, please be on the lookout for difference in all if its many forms – and when you see it let your heart be full, let down your guard, and see where it takes you. I’ve spent the past twenty-three years there – and guarantee it’s somewhere good.
Erin O’Connor is a participant in the Greenwich-based ABILIS Inc. program which provides a broad spectrum of support services to individuals of all ages that have special needs and disabilities. Eileen O’Connor’s collection of essays: eating, pizza backwards and other adventures will be available later this spring.
