Behold, the Autism Mama

My son Jack has autism. 

He was born on Mother’s Day, in 2004. 

Over the past sixteen-almost-seventeen-years, I have had to tell and re-tell his diagnosis so many times, I’ve lost count. 

By now, I’m pretty sure I’ve heard it all when it comes to autism.

I’ve heard about the vaccines, and the poor maternal bonding, and the gluten and the horse therapy. 

One kindly older woman even suggested Windex could be to blame. 

Windex? I thought.

The problem is, can be hard to know what to say, or how to respond. I get it, I really do, so I thought I’d make a list of things that I found helpful.

If your friend/cousin/neighbor/sister confides her child has autism, stand tall. Do not crumple your shoulders forward or clasp your hands over your heart. Try not to gasp.

You see, we know it’s a big deal, this news. We don’t necessarily need to see it written all over your face too. We don’t feel like consoling you at the same time our own heart is breaking wide open.

To keep it simple, I thought I’d offer a few go-to responses. 

What is this like for you?

Help me understand what this means.

Tell me what you need right now. 

Things not to say:

Everyone has autism these days!

Are you sure? He doesn’t look like he has anything wrong. 

I’m sure it will all work out in the end. 

Listen to understand, instead of to respond. This is key. It is important.

You might find the listening part is the hardest work. It takes a lot of patience. 

You will feel tempted to respond with weak and hollow assurances that everything will be okay. 

It may never be okay. 

It will be hard and ordinary and beautiful and breathtaking, but nothing will simply be okay again.

At one point in the conversation, you may be moved to share an autism story of your own—the wonky Uncle who has many cats, the half-cousin twice removed who grew a third eye from medication. 

Don’t do this. I beg you.

If your friend/cousin/neighbor/sister tells you how she is grappling to come to terms with this new diagnosis, ask her flat-out what she needs. 

What do you need right now?

And when she says she needs nothing—because she will say that, you know—nod your head. Wait a few minutes, and offer to:

Watch her other kids while she brings her complicated child to occupational therapy/speech/sign language/IEP meetings.

Make some food, because food is important and good and has special healing qualities.  

Make a date to meet for coffee. Spend an hour over hot, delicious cups of lattes listening to her every worry. Share her tears. Embrace her heartbreak.

For a few short moments, don’t brag about the honor roll. Don’t bring up the trophies on the mantle, or the late inning home run.

It’s not that she won’t delight in the accomplishments and success within your own family. She will, of course she will. But in this bubble of time, she is tender, and raw.

She is coming to terms with the possibility that there may be no honor roll, or trophies, or game -saving runs in her future.

Her victories will look different from now on—getting through dinner without a meltdown, a tentative hug in the late afternoon sunlight, a full night of sleep.

Celebrate her triumphs, no matter how small.

She needs you.

She needs you as—one step at a time—she begins to rebuild a new kind of normal. 

Learn from her.

Learn about social stories and advocacy and weighted blankets. 

Learn about life stripped to the bare essentials—sleep, mealtimes, and the tender care of a complicated child.  

Then, after the listening and the learning and the good words and warm coffee, behold.

Behold her strength, her spirit, her patience, her tenacity, her courage. 

Her love is fierce, and fiery. It cannot be contained.

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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