It’s more complicated than it sounds. When I was practicing as a child psychologist, I took pride in my ability to provide clear and honest diagnoses. No child left my office without a proper understanding of their condition. I often criticized parents who shied away from using the term “autism,” fearing their children might be “labeled.” I thought they were being cowardly.
Then I became a parent to my own child with autism, and I found myself falling into the same pattern of avoidance.
I only uttered the word “autism” when absolutely necessary—on medical forms, during conversations with therapists, or while searching online. Otherwise, my son was simply “our little Sam.” If anyone probed further, I’d refer to his “special needs” or “some developmental challenges.” Most people didn’t seem to seek more details after that.
I understood the depth and intricacies of autism, yet I felt uncertain about how others would interpret it. I essentially placed Sam in an “autism closet,” where he shared space with many others. Upworthy once spotlighted Alex Johnson, a talented musician with autism, who stated, “On a personal level, it feels safer to keep these aspects of myself hidden.”
As a mother, I hesitated to lead with the A-word. Autism is just one aspect of Sam’s identity, much like my own struggles with severe astigmatism. The comparison illustrates that we both face challenges beyond our control, and neither of us is to blame. Yet, my glasses provide me with clarity that current autism treatments don’t offer Sam. Plus, my thick lenses are visible; Sam’s autism isn’t always apparent.
When Sam was 5 and about to start kindergarten, we visited a play center in Washington, D.C., filled with themed play areas. Sam donned a sparkly black outfit and took to the mini-stage with a toy guitar. As he performed, I captured the moment with my phone, our baby daughter nestled in my lap.
“Look at him!” another mother exclaimed. “He has such rock star moves!”
“Thank you,” I replied, beaming at my son, who was not just adorable but undeniably cool.
Then Sam sang a line from a show in a gravelly voice, “He killed his grandmother and tortured his mother’s dog. My kinda guy. Carnage!” The other mother paled, quickly gathering her daughter and leaving before I could clarify. I turned to the other mother, who was too pregnant to move, and said, “I’m really sorry. He has autism and is just repeating a line from a show.” I felt compelled to make excuses for his behavior, so she wouldn’t think he was a budding criminal.
In that moment, I was betraying Sam. When he exhibited quirky behavior, I rushed to label him as autistic, even though he had been just as authentically himself moments before—playful and charming, without anyone knowing his diagnosis.
I wasn’t merely avoiding the A-word; I was doing something worse. Instead of allowing Sam to be his whole self, I hastily affixed a label to his behavior, fearing judgment from another parent.
Sure, there’s greater awareness of autism today. People know about individuals who have thrived, those with unique talents and interests. But it appears my awareness campaign seeks to apologize for negative behavior.
I’m not suggesting I need to wear a T-shirt declaring “This is my autistic son, Sam.” In brief encounters, I often choose to let it slide.
However, many people around Sam aren’t aware he is autistic. The neighbors who depend on him to care for their pets, the man who enjoys tossing a football with him, the dry-cleaner staff who praise his manners, and his sister’s piano instructor who admires his encouraging nature—they don’t know his diagnosis.
To foster understanding about the full spectrum of autism, I must be more forthcoming. I was aware of this before becoming a mother, but motherhood made me hesitate, and now I’m learning that lesson again.
What benefits the autism community ultimately benefits Sam too.
For more insights into parenting and fertility, check out this exceptional resource on pregnancy and home insemination or explore options available at Make a Mom.
In conclusion, embracing our children’s identities fully, including their challenges, is crucial for their acceptance and understanding in society.