The way my son explained his brother's autism

January 25, 2017

This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism, at Kim is also the author of "Raising Autism: Surviving the Early Years."

Justin comes barreling out of the house onto our patio with sitter in tow, and I turn in time to see Zach follow his unerring path toward the pretzels, then watch him swivel back to his friend. “That’s my big brother Justin” he says. He continues with “He has autism. His brain isn’t broken, it’s just different.” Zach’s buddy shrugs in response, and the two boys head back to the pool and are soon in deep negotiations regarding our array of supersoakers.

I look around me, but all the adults are deeply engrossed in conversation. No one has witnessed the fact that my six-year-old has just described his sibling as simply “different”, not “wrong”.

It’s a quiet victory, but I’ll take it.

We’ve worked hard in this house to explain the disorder to Zach, to demystify Justin’s obsession with the same three sentences on a DVD, his utterances of “eeeeee” when he’s excited, his ritualistic adherence to routine. Zach has been pretty receptive to all of it, I think in part because he is the younger child, and living with a sibling with autism is all he’s ever known. We have him in an autism sibling group at Justin’s school, and I bring up the concept of acceptance whenever possible (these dialogues take place mostly in the car, which is where most of our deepest conversations seem to take place these days).

He will occasionally say he wishes Justin would play with him, which of course breaks my heart, and then I remind myself he has two forty-something playthings who bend over backwards to accommodate his every creative need, and I feel better. Zach still calls Justin his best friend though, which eases the ache in my heart. I know one day this will change, but for now I cling to his declaration, let it warm me through. He is okay with how his brother was created, at peace with how he diverges in development from his more typical path.

On days when autism sometimes seems impossible, I remind myself I can learn a thing or two from my youngest son.

Zach rushes by me and dramatically announces “I need juice!,” but before I turn to go into the house I grab both ends of his towel and pull him toward me, embracing his wet and slightly clammy form. “I love you and I’m proud of you for what you said about Justin” I say, and he wriggles away from me, but I can see the wheels turning in his formidable brain. “I love you too Mommy, now can I have some juice?” he responds, and I release him back to his friends to do his bidding.

I savor the moment, because all too often things here are just so damn difficult. I need to continue working on recognizing the gifts, to let them fill me and in turn, empty out the darkness. I watch the tableau before me, one child happily engaged in play, one happily munching carbs, and smile.

For once, we’re all at peace.

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