Diagnosis Day

I know you are hurting.

I know you are worried.

I know your whole body is trembling, and clammy with sweat.

I know, because I once heard the very words you heard today.

Yes, it is Autism Spectrum Disorder.

I heard them fifteen years ago, when I was a New Autism Mama.

Now, I am an Old Autism Mama.

Take a deep breath. Just breathe.

It is a diagnosis, that’s all.

Yes, it is life-changing. Yes, it is official, and important.

It is also momentum, and possibility, and a chance to discover.

You’ll just have to believe me about this.

Believe me when I tell you this is same child you had yesterday, before the appointment.

It is the same child as before the doctor, and the words, and the forms, and the receptionist’s soft smile behind the desk.

This is your child.

My son Jack was diagnosed on a gray afternoon in November. It was drizzling outside.

I’ve never had what you might call a light bulb moment, or an instance of clarity so hot and powerful, it rendered me speechless.

But on our Diagnosis Day, I did.

See, the kind doctor and I were talking and reviewing the reasons why I was concerned—very little speech, no eye contact, the sort of thing—while Jack spun and whirled around the small office on chubby toddler legs. He wore overalls, because they were the only kind of clothes he hadn’t learned to wriggle out of yet.

He lost his balance and slammed his shin into the corner of a metal filing cabinet. And like he always did when he got hurt/frustrated/scared/angry, he sank to the floor, and he screamed like the earth itself was on fire.

The doctor looked at me, and gently asked a question.

“Does he ever come to you for comfort?”

And that’s when I knew. I knew there was no turning back. I knew my life as I knew it was balanced on the edge of a precipice, and if I wasn’t careful, I might plummet to the bottom.

Jack is sixteen now.

All day, we work on communication skills and practice skills and cooking skills.

We work on how to put the wet clothes into the dryer, and when to turn the oven off, and the best way to ask for extra cheese when you order a pizza.

At sixteen, he does laundry. He writes grocery lists. He packs his lunch for school.

He is capable of many things, so it might surprise you to know that I still make his bed. Every morning, I walk into his room after he’s left for school, and I pull up the sheets and smooth out the blankets.

I arrange his six pillows just so, and place his special stuffed bunny in the center.

I don’t always know how to show my son I love him. That’s the thing.

I can’t hug him because he doesn’t like it if I touch him.

I tell him I love him twenty-nine times an hour but I’m not sure what—if anything—it means to him.

So, I make his bed.

This is a small big thing I can do.

I love him fiercely.

For now, this means a neatly made bed, and pillows stacked high.

Don’t be afraid of the diagnosis, is what I am trying to tell you here.

It means everything and it also means nothing.

I know what you’re wondering. You’re wondering if he ever comes to me for comfort.

And I will tell you that sometimes he does.

Trust me, you have everything you need within you for the journey ahead.

Breathe, and enjoy the ride. And on the days when you doubt yourself, all you need to do it arrange the pillows, and pull the blankets smooth.

Love you lots,

Carrie

Written by, Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. 

Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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