April is Autism Awareness Month. And as the mother of a young adult “on the spectrum,” I am grateful for the effort to spotlight this ubiquitous neurological disorder.
But I hope more than t-shirts, wristbands, marches, and calls to wear blue, the biggest takeaway is an understanding of the complexity and wide spectrum that is autism and a heightened sensitivity to the challenge and joy of difference.
As with the rest of the population, no two people with autism are alike. Autism claims a host of renowned scientists, artists, writers, and musicians who may have trouble reading social cues or whose passion for their work inspires hyper focus. Bill Gates suggests in his recent biography that as a child he would likely have been diagnosed with autism.
On the other end of the spectrum, there are those 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 brilliance and insight, she struggles with everyday tasks. When she was two-years-old my father-in-law, trying to wrap his head around her diagnosis, wondered if she would ever be able to walk to the corner and buy herself a cup of coffee. At the time I had no idea — but I certainly hoped so.
Today I know, and have come to accept, the answer is no — not alone.
Erin, 23, will always rely on someone to help her make her way through 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.
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. Last fall this hope was realized tenfold on the streets of Rye.
To get her some job and social skills training, Erin (and I) took on the task of delivering The Rye Record to local businesses. Many stops turned into a small celebration, as Erin happily bounded into each store with her bag of goods. Barbers, bank tellers, and restaurant and bookstore owners reached for lollipops, stickers, pens — something they could give back as she handed them their paper. She regularly left one home décor store with a handful of Hershey Kisses.
As I watched this exchange, and the 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 lean into their most natural instinct to be open, welcome, and kind.
However brief, an encouraging nod, a word, a reply to her endless questions — “What is your name?” — means more than anyone could ever know, and my gratitude knows no bounds.
So to celebrate Autism Awareness Month, please continue to 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 23 years there — and guarantee it’s somewhere good.
