Parenting
By: Sarah Thompson
Dec. 3, 2015
It’s more complicated than it seems. As a former child psychologist, I prided myself on being direct and honest. No one left my office without a clear diagnosis. I often judged parents who hesitated to disclose their child’s autism diagnosis, fearing the stigma of a label. I thought they were being cowardly.
Then, my own child was diagnosed with autism, and I found myself doing the very same thing.
I only uttered the term “autism” when absolutely necessary—on insurance paperwork, during discussions with specialists, or while searching for resources online. Otherwise, my son was simply “our Alex.” When pressed for details, I would refer to him as having “special needs” or “developmental delays.” Most people accepted that without further inquiry.
I was well aware of what autism encompassed, but I couldn’t be sure how others would react. I effectively confined Alex to what I call the “autism closet,” where he shared space with many others. Take, for instance, a public figure like Jamie Lee, a talented actor who has spoken about staying in the shadows regarding her autism diagnosis, saying, “For me, it has often felt safer to keep such matters private.”
Now that I’m a parent, I find myself reluctant to lead with the term autism. It’s just one facet of who Alex is, much like my own extreme nearsightedness. The analogy works to some extent; both of us face challenges we didn’t choose, and there’s no blame attached. Acceptance is key. However, my glasses make a tangible difference in my life, while current autism treatments offer limited benefits to Alex. Plus, my eye condition is apparent, while Alex’s autism often isn’t visible at first glance.
When Alex was five and about to start private kindergarten, we visited a whimsical play space in Washington, D.C., filled with themed rooms for imaginative play. Dressed in a sparkly black outfit complete with a cape and boots, Alex took to the mini-stage with a toy guitar, singing and dancing with abandon. I captured the moment with my baby daughter on my lap.
“Isn’t he adorable!” said another mother nearby. “He’s got some serious rock star moves!”
“Thanks,” I replied, beaming with pride. “Not just cute, but cool.”
Then, in a gravelly voice, Alex belted out, “He killed his grandmother and tortured his mother’s dog. My kinda guy. Carnage!” The other mother’s face turned pale as she quickly whisked her daughter away. I immediately felt compelled to clarify, “I’m so sorry. He has autism, and he’s quoting a line from a Broadway show,” hoping to dispel any assumptions that my son was anything but innocent.
In that moment, I felt like a traitor. When Alex’s behavior took a dark turn, I rushed to label it as autism. Yet, he had been just as autistic moments earlier when he was charming, and no one else knew the truth.
By avoiding the A-word, I was doing something far worse. Instead of allowing Alex to be his multifaceted self, I slapped a label on his behavior to shield myself from judgment.
Yes, society has become more aware of autism. People understand there are successful individuals, unique interests, and many positives that come with the diagnosis. But is it fair that my awareness campaign seems to only focus on making excuses for less-than-ideal behavior?
I’m not advocating for a campaign that shouts, “This is my autistic son, Alex.” In brief interactions, I often let it slide. But many people interact with Alex without any context about his autism. The neighbors who trust him to care for their pets, the man who plays football with him, the dry cleaner staff who admire his politeness, and his sister’s piano instructor—none of them have a full understanding of Alex’s diagnosis.
If I want people to grasp the full spectrum of autism, I need to articulate it. I recognized this before becoming a mom, but now I’m relearning the lesson.
What benefits everyone on the autism spectrum ultimately benefits Alex too.
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Summary:
Navigating the complexities of autism can be challenging for parents. From my experience as a child psychologist to becoming a mother of an autistic child, I’ve grappled with the struggle of openly discussing my child’s diagnosis. While I’ve witnessed societal shifts in understanding autism, I recognize the importance of embracing and sharing Alex’s full identity. This journey has taught me that awareness and acceptance are essential, not just for my child but for everyone on the spectrum.
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