How I Hesitated to Embrace My Child’s Autism Journey

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You might think it couldn’t get any more complicated, but oh, it really can. In my previous career as a child psychologist, I was all about being straightforward. I made sure that every family who walked through my door left with a crystal-clear diagnosis. I used to look down on parents who shied away from revealing their child’s autism diagnosis, thinking they were just avoiding the “label.” I thought I was above that.

Then, life flipped the script, and I found myself as the mom of a child with autism. Suddenly, I became one of those parents I had once judged. I only uttered the word “autism” when absolutely necessary—on paperwork, with teachers, and when scouring the internet for resources. Most of the time, my son was just “our little Ethan.” If anyone pried, I’d mention his “special needs” or “some developmental challenges.” That seemed to suffice.

I fully understood the nuances of autism, yet I hesitated to share that knowledge with others. I tucked Ethan away in my mental “autism closet.” Interestingly, I came across a story about Alex, a talented musician who also has autism. He once said, “For me, it feels safer to keep these things private.”

Now that I’m a parent, I don’t want to lead with the A-word. Autism is just one piece of who Ethan is, much like my own struggles with extreme nearsightedness—something that defines me but doesn’t entirely sum me up.

The comparison to my vision issues makes sense because we both face challenges we didn’t choose, and neither of us is to blame. However, my glasses help me navigate daily life far better than any current autism treatments support Ethan. Plus, my thick lenses are visible to everyone, while Ethan’s autism is not something people can see right away.

One memorable day when Ethan was five, we visited a quirky play space in the city. He dressed up in a flashy black outfit, complete with a cape, and took center stage with a toy guitar. As he rocked out, I couldn’t help but capture the moment on my phone, with my little girl cozily perched on my lap.

“Isn’t he adorable?” another mom exclaimed. “He’s got some serious rock star moves!”

“Thanks!” I replied, beaming at my son. He was more than cute; he was downright cool.

However, things took a turn when Ethan belted out a line from a musical he loved, stating, “He killed his grandmother and tortured his mother’s dog. My kinda guy. Carnage!” The other mother’s face went pale as she hurriedly gathered her child and left before I could explain.

I quickly turned to the remaining mom, who looked too pregnant to move, and blurted, “I’m so sorry! He has autism, and he’s just echoing a line from a show.” I felt a wave of guilt wash over me. Why did I feel the need to label Ethan’s behavior as “autistic” right then? Just moments earlier, when he was charming everyone with his cuteness, I hadn’t mentioned his diagnosis.

Instead of letting Ethan be the complex individual he is, I hastily slapped a label on his darker moments to avoid judgment from strangers. Sure, people know more about autism than ever before, and they’re aware of the incredible individuals who thrive with it. But my awareness campaign seemed to focus solely on apologizing for the not-so-great moments.

I’m not advocating for a T-shirt that says, “This is my autistic son, Ethan.” With brief encounters, it’s often difficult to explain. However, there are many people in our lives who don’t know Ethan has autism—like our neighbors who trust him with their pets when they’re away, the friendly guy who tosses a football with him, or his sister’s piano teacher who admires his kindness. I haven’t made Ethan’s diagnosis clear to them.

If I want others to grasp the full spectrum of autism, I need to find the courage to share. I understood this before becoming a parent and am learning it all over again. What benefits the larger autism community ultimately benefits Ethan as well.

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In summary, navigating the world as a parent of a child with autism is complex, and I’ve learned the importance of openly discussing my son’s diagnosis to foster understanding and acceptance.