“Poppa, Do You Have Autism?”

I am sharing an excerpt from my keynote address at the HANd Autism & Neurodiversity Conference at Appalachian State University in North Carolina on Sept. 27, 2019. I shared it on social media recently, as well. It is a story that helped frame my understanding of autism, my son’s understanding of autism, and, I think, both our feelings about it:

Some of my son Nicholas’ hardest years were between when he experienced that early regression in his communication and connection through about third grade. His frustrations around expressive communication, his social deficits and consequent loneliness, his sensory integration issues, his anxiety, and his severe OCD fears and interests made life hard for him much of the time.

My son Nicholas in 2010

Each year, he realized a little more consciously that he was different from other children, and he wanted to know why. He didn’t understand why he couldn’t do some of the things other children did. He wanted to do them. He wanted friends. He was largely isolated. His self-esteem suffered.

I think the concept of autism helped. “Autism is part of who you are,” I’d say, “and it makes some things easier for you—you’re so good at math, and you never get lost and can always tell me which way to turn when we’re driving—and it makes some things harder, like talking and not feeling okay unless everything is ‘just so.’”

Nicholas would “loop” on the idea of autism conceptually and ask why. That was hard. I’d say, “It’s one of those things that just is, like having dark hair or blue eyes, or being tall or short. Some people are autistic, and some people aren’t.”

He was still searching from his very soul for a better understanding of who he was and why.

We always had a nighttime routine before bed, usually involving singing songs and sometimes involving a game or two. We still do that. When Nicholas was 10 or 11, I had this idea to try to build his verbal communication skills by having him practice asking me questions—three questions each night after singing and before he went to sleep.

Nicholas in 2014 (pic by Sarah Farmer)

The first couple of nights he had no idea what I was talking about. With his typical echolalia, he mimicked back questions I demonstrated for him as examples: “What’s your favorite ice cream, Poppa?”; “What games do you like, Poppa?”; and so on.

But then he got it, and the very next night, he was ready.

When it came time to ask a question, he rushedly asked, “Poppa, do you have autism?”

In addition to being a question, it was such a completely original thought from Nicholas, like nothing I’d ever suggested to him. It was a profound question, advanced and intelligent but also almost an exclamation—of identity, of belonging, of longing—while he was on some level clearly trying to frame his autism’s meaning for himself.

It was aching, too, and and I ached for him.

And I had to tell him the truth: “No, I don’t have autism, Nicholas. But I’m so glad you do. You are wonderful, kind, and smart, you have taught me so much, and having autism is a part of who you are.

“I wouldn’t change a thing about you.”

Not every autistic has to embrace that aspect of their identity, their autism, as primary or even at all. There’s a choice, as we all have a choice about how we see ourselves and define ourselves and what we regard as important.

I wondered then, and I wonder still, in what ways Nicholas wrestles with his sense of identity and what his autism means as part of it. I wonder if it’s something he would change about himself. I hope he embraces his identity, and I also know many autistic adults—like many nonautistic adults—struggle with questions of identity all their lives, often in the context of a lack of acceptance from others, including the people closest to them.

Nicholas in fall 2019

I think getting to know some autistic children and, especially, going to autism camps helped him a great deal and made him feel less lonely and more confident about himself. Later on, having an autistic mentor and a much larger circle of autistic friends helped, as well.

The autism diagnosis matters toward services. It matters toward perception. It might matter toward identity and self-understanding. It might give family or professionals or friends information about how to best support a person in her or his life.

But it doesn’t change who a person is. It’s a label. And ultimately autism doesn’t need support.

Autistic people do—just like everyone else.

 

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I invite you to read some of my other articles about autism and intellectual disability here, including:

 

 

One thought on ““Poppa, Do You Have Autism?”

  1. Beautiful and informative essay. My daughter Emily Rubin works internationally in this field as a consultant and is coauthor of the SCERTS model. You are on the same page.Thank you.

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