When I Heard the Word 'Autism' I Only Knew Stereotypes. Here's What I Know Now.
“I’m 100 percent certain she’s on the autism spectrum.”
As the doctor said the words, I felt her eyes on me, waiting for a reaction. Instead I found myself sitting perfectly still with a smile frozen on my lips as I watched her play with my 3-year-old daughter.
We were there because Mae had been having stomach problems and seemed to be in pain. When we’d walked in the door it’d seemed like a minor appointment. I wasn’t even sure if we should be there, but it had been going on for a while, and when I called they told me to bring her in.
I didn’t realize that before we walked out of the tiny exam room, I’d hear words that would rock the foundation of our little world.
Autism. I knew stereotypes. I knew nothing.
We stepped outside the doors to find that the world hadn’t come to a screeching halt because of our news. I called my husband. I called my mom. I called the number the doctor had given me. They could see us next week.
In the days that followed I began to keep a list of things to talk about at our appointment. What worries did I have?
Well, she was 3 and didn’t speak. When we were outside, if I let go of her hand she would start to run… and run… and run… without looking back. I was terrified of losing her. She was fearless. She climbed everything. We’d built special baby gates to keep her off the stairs. One was five feet high. It took her about ten seconds to scale it. One day I came into her room to find her hanging from the curtain rod, smiling at me. Oh… and she didn’t seem to feel pain. She’d run into another child while swinging high on the swings at the park and had been thrown a good six feet. My heart was in my throat as I ran to her, but she jumped up and started to giggle before I reached her.
The tests came and went in rapid succession.
I waited for the call that promised to tell me her results. When it came I was standing in the kitchen making lunch. She qualifies for therapy, the voice told me. What’s that mean? I asked. She was undoubtedly on the spectrum, they said.
I leaned against the counter and thanked the person on the other end of the line for delivering the news.
I’d known. But knowing deep down and officially being told are two different things. Suddenly the unknown loomed, larger than life.
People told me nothing had changed. I knew what they meant. My daughter was the same little adorable ball of energy she’d always been. But at the time it felt like everything had changed. I was an introvert, a homebody and suddenly we had doctor appointments and therapy sessions six times a week. What would the future hold?
Fourteen months have passed since we received her diagnosis. Sometimes it feels like no time at all, and sometimes it feels like a lifetime. I still don’t know what the future will hold for us. But that’s OK. No one does. I’ve learned a few things though, since the doctor first said those words that set us off on this path.
If I could go back in time, I would tell myself that it’s going to be better than OK — that it’s going to be amazing. I’d tell myself that there will be days that seem to stretch on forever, but that there will also be days when your heart will feel like it’s going to explode in your chest because you’ll appreciate the wonder of the simplest moments in ways that you never knew were possible.
When she looks at her newborn baby brother and says, “love, love, love” over and over again while touching his cheeks, his mouth, his nose with careful fingers, you’ll savor every touch, every word. When she holds your hand as you’re tucking her in and says, “Happy. Mama.” your heart will overflow with the wonderfulness of the moment.
You’ll also learn that words aren’t the only way to communicate and that sometimes they aren’t even the best way. A word, look, a sign, a gesture — life and the way we communicate will take on the richness of a sort of dance.
If I could tell myself one thing, it would be that you’re going to do so much more than survive. You’re going to love and laugh. And perhaps most of all, you’ll learn that the ordinary will take on an added sweetness and become extraordinary as the smallest moments take on the luminous glow of a hard-won triumph as you watch her grow into the person she is meant to be.
Follow this journey on A Woman’s Place…
For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.