It’s more complicated than it seems. As a child psychologist, I took pride in my straightforward approach; no one left my office without a precise diagnosis. I often frowned upon parents who shied away from openly discussing their child’s autism, thinking they were doing them a disservice by avoiding the label.
But then I became a parent to a child on the spectrum, and I found myself doing the same thing.
I mentioned the “A-word” only when necessary—on insurance forms, in conversations with professionals, or when searching for resources online. Otherwise, my son was simply “our little Max.” If anyone pressed for more information, I’d refer to him as having “special needs” or “some developmental delays.” That usually sufficed, and most didn’t ask for further clarification.
I understood the complexities of autism intimately, but I couldn’t be sure how others would react. I placed Max in what I now think of as the “autism closet.” He wasn’t alone there; Upworthy featured an actor named Alex, who also kept his autism under wraps, stating, “On a personal level, for me it is much better to keep these things secret.”
As a mom, I was hesitant to lead with the A-word. Autism is just one facet of Max’s identity, much like my own struggle with severe nearsightedness. This comparison makes it clear that both of us face challenges we didn’t choose, and there’s no blame or cure. Just accept and adapt. However, this analogy quickly falters; my glasses provide me with immediate assistance, while the current treatments for autism don’t quite measure up for Max. Moreover, my thick lenses are visible, whereas Max’s autism isn’t as easily recognized.
When Max was 5 and preparing for private kindergarten, we visited a local play center filled with themed rooms—everything from cooking to rock ‘n’ roll. Dressed in a sparkly outfit, he took center stage with a toy guitar, striking poses that made me proud. I snapped photos with his little sister resting on my lap.
“Isn’t he adorable!” a fellow parent remarked. “He’s definitely got the rock star vibe!”
“Thank you,” I replied, feeling proud. Not just adorable but undeniably cool.
Then, out of nowhere, Max belted out, “All the weirdos in the world are here right now in New York City.” He threw his arms up, looked skyward, and shouted, “He killed his grandmother and tortured his mother’s dog. My kinda guy. Carnage!” The other mother turned pale, scooped up her daughter, and hurried away before I could explain. I quickly said to the remaining mother—who appeared too pregnant to move—“I’m really sorry. He has autism, and he’s quoting a line from Spider-Man: Turn Off the Dark,” hoping to clarify that Max was not, in fact, a budding criminal.
In that moment, I felt like a traitor. When Max’s behavior turned dark, I rushed to label it with autism to shield myself from judgment. But he had been just as autistic moments before, when he was charming and the other parents were none the wiser.
I wasn’t leading with the A-word; I was doing something worse. Instead of allowing Max to be the multifaceted individual he is, I reduced his complex identity to a label to protect myself from scrutiny.
Yes, awareness of autism has grown; people are more informed about those who thrive with it, showcasing their unique skills and interests. But my awareness campaign seemed to only highlight the negative aspects.
I’m not suggesting that I walk around proudly declaring, “This is my son, Max, who has autism.” With brief interactions, it’s tricky to navigate. However, many people in Max’s life—like our neighbors who rely on him to care for their pets, the man who enjoys tossing a football with him, or the dry cleaner staff who praise his manners—remain unaware of his diagnosis.
If I want others to grasp the full spectrum of autism, I need to be open about it. I realized this before I became a parent, and now motherhood is teaching me that lesson all over again.
What benefits everyone with autism will ultimately benefit Max too.
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In summary, navigating the complexities of parenting a child with autism requires courage and honesty. We must embrace the full identity of our children, including the aspects that society may find challenging to understand.