My son Jack was diagnosed with autism in 2005.
I didn’t know a single person with autism.
I didn’t know anyone who was shuttling their toddlers to speech therapy or sitting through evaluations in small, windowless rooms.
Sensory processing disorder was a phrase you might find in a medical textbook, not on a questionnaire for preschool.
Every once in a while I’d wonder how and when we’d tell him of his own diagnosis, but the idea usually scuttled quickly to the recess of my brain. I couldn’t bring myself to reach my fingertips toward the proverbial fire.
After all, there is no handbook for any of this.
There is no handbook that gives instructions how to tell your son he has a lifelong diagnosis without cure.
I couldn’t figure out a good way to explain how anxiety, Robin to autism’s Batman, slithered in one February like a thief in the night, threatening to steal his joy, his happiness, the very smile on his face, and how the teeny-tiny white pill he swallows before bed keeps the thief at bay and the occasional giggle in his voice.
Or the way his father and I are constantly sifting through the flood of information and advice about hyperbaric chambers and gluten-free pretzels and advanced behavior therapy—sifting and sorting to focus on the boy beneath the diagnosis.
It’s not as though it was a secret. He must have heard me use the word a hundred times a day.
Hi, I need to make an appointment for my son, he has autism.
He has autism, he might not answer you right away.
This is Jack. He has autism.
Yet still I was unsure how to tell him myself, or if I even should.
So I didn’t. We waited.
When he was eight, Jack started to notice things.
He noticed he was the one who left the classroom for speech therapy while everyone else worked on their science project.
He noticed he had a paraprofessional accompany him throughout the day, while the other kids ran unencumbered and free.
He noticed the way they talked about birthday celebrations, and sleepovers, and pool parties.
It was like following the slow burn of lit fuse. I knew we were getting closer and closer to the flame.
It was a Sunday morning in late September—the day after my birthday. I was sipping my coffee while Jack perched at the counter flicking the top to the syrup open and closed.
Out of nowhere, he asked, “Why was I. Born with autism.”
Carefully, we answered his questions. We told him it’s a natural part of himself, like his blue eyes or the freckles on his arm. We said yes, grown-ups have it too, and no, it will never go away. We kept our tones calm and neutral.
After a few minutes, he hopped off the stool and went upstairs.
Jack is seventeen now, and autism remains an ongoing conversation in our house and our family. We honor it, we acknowledge it, we talk about it.
Ours is not a story of the kind of autism you find on television or in the movies.
He is not a savant.
He doesn’t write brilliant symphonies or paint masterpieces. He is not particularly great at math.
He understands he’s different from his peers. He understands there is a chasm separating him from kids his age, but he has no idea how to bridge it.
Knowing the name of your diagnosis, it seems, does little to alleviate the loneliness and isolation that are its core attributes.
As much as I hoped it might, the long fuse didn’t end one September morning. There have been many other instances where I longed for a handbook to help explain a life that’s been altered by a diagnosis.
In less than two months, we will stand before a judge and appeal for guardianship. This boy Jack will have to state his full name, and agree that he is not able to handle his own financial and medical needs.
We are taking away everything he has ever hoped for—independence, sovereignty, choices.
It may break him.
It might break me.
The hard part isn’t over yet. It may never be.
I don’t know if I did it right.
I never know if I’m doing any of it right.
But looking back, I wish I’d moved beyond simply answering his questions. I wish I’d taken his hand in mine, or gently put my arm around his shoulders. I wished we’d told him, as we have so many times since, that autism is simply what he has. It is not who he is.
And when he turned to climb the stairs, I wish I’d followed him one step a at a time, if only to occupy the same space for a moment.
“For Mom. Does everyone with autism. Have to see the judge.”