I Haven't Told My Closest Friends About My Son's Autism Diagnosis, Here's Why
One evening several months ago, I met a friend and former colleague for drinks. As we stood at the bar waiting to place our order, she asked me something that made me feel uncomfortable, embarrassed, and also a little bit guilty.
"Do you know anything about IEPs (Individualized Education Plans)?" she asked. Her bright brown eyes clouded over with concern as she continued, "I just found out my daughter may have some delays. Her teacher says she's struggling with reading, and her inability to pay attention is causing some behavior problems."
Though we'd worked together for several years, we live in different states. While we'd shared a lot—complaints about bosses and husbands, misgivings about career trajectories, and general musings on the inherent challenges working moms face—we'd never visited each other's homes. Her daughter, 7, and my three sons, 16, 13, and 11, haven't met. Chalk it up to the difference in their gender or their ages, but we spoke very little about our kids outside of their quirky food aversions and elaborate bedtime avoidance strategies, which I hated to tell her, some never outgrow.
"Do you know anything about special education?" she asked, frowning. "This is all new to me. It's like a whole other language."
Though I hadn't had a single sip of wine yet, my cheeks flushed as I thought about the ways I might answer her question. How could I say, "Yes, I'm well-versed in the IEP process," without it derailing what was meant to be a carefree evening? Would I be able to adequately explain that although we'd been friends for almost a half-dozen years, I'd never told her my son has autism?
My youngest's diagnosis isn't new. He received it eight years ago. While that may sound like ample time to come to terms with it, in many ways, it feels like it was both yesterday and a lifetime ago. When I think back to that day, I can see the nurse practitioner repeatedly trying to get my then-toddler's attention, calling"Charlie! Charlie! Charlie!" and it still catches my breath. I picture him so close to me yet so far away, locked in his own world, singularly focused on spinning the wheels of a toy train, and all over again, I feel the pit form in my stomach, the tears spring to my eyes, the swell of fear and rush of hope battling it out within me as we finally put a name to the thing that seemed to have stolen my child.
My son's condition wasn't something I'd intentionally hidden from my friend. But in that moment, it felt like an awfully big thing to not have mentioned earlier.
"I do know about IEPs," I said, hoping my awkward pause didn't feel as eternally long to her as it did to me. "I'd be happy to try to help you."
She looked grateful, confused, but also eager to hear more.
"My son—my youngest—has one," I stammered. "He's had some significant speech delays and sensory issues."
While that's true, it's not the whole story. Not even close.
Still, I shared what I thought would be helpful, and promised her to send her links to books, articles, and blogs that had been invaluable to me as I'd attempted to navigate a world filled with acronyms and seemingly arbitrary rules and deadlines.
And yet, if I could've found the words that night, there's so much more I'd have shared. But I held back. As strange as it may sound, she isn't the only friend who doesn't know my son has autism. These are the reasons why.
It's Not an Easy Conversation to Have
Because autism is a spectrum disorder, characterized by varying degrees of challenges with communication, social skills, and repetitive behaviors, it means something different to everyone. When you share that your child has autism, often people conjure scenes from Rain Man or The Good Doctor and extend their congratulations: "Maybe you're raising the next Einstein!" Or, they recall heartbreaking news stories of kids who've wandered away from school or home only to have met a devastating end. They offer sympathy: "You must worry all the time. Does that mean he'll live with you forever?"
Neither extreme is helpful.
Others don't know what to say, and I get it. Naturally, I want to be an advocate and champion the need for acceptance and inclusion, but there are moments when the weight of discussing it all feels too heavy to bear.
Sometimes Mom Needs a Break
As anyone who cares for a loved one with autism knows, there are days (and often weeks or months), when it feels all-consuming. Sometimes it's nourishing to shed that mantle of responsibility and savor a few hours of camaraderie with people who aren't aware of what's going on at home.
By not telling certain friends about my son's diagnosis, when we're together, I slip back to a simpler identity. (It's surprising how cathartic it can be to take a break and discuss something as mindless as bell sleeves or the latest Netflix series.) And, because they don't know, these pals don't feel obligated to ask the right questions or withhold their excitement about their kiddos' progress. It's not that I don't trust them to be sensitive, but this way I know they're not censoring themselves.
I Don't Have the Answers
When you tell people that your child has autism, most have questions. Unfortunately, I don't have answers. Many will ask what I think caused it. I wish I knew. I'd love to be able to explain it, to pinpoint the exact moment Charlie began to drift away from us, lured into an isolated world though physically present. I wish that I could tie it to one mistake I made along the way because I know that would allay other parents' fears and serve as a roadmap to safer terrain.
But I can't offer any absolutes, and I don't want to engage in verbal sparring over vaccines or therapies. I don't have the time or the energy. I am fumbling my way through each day armed with love, hope, and the support of family and amazing teachers. Some days that is all I know for sure.
Advice Isn't Always Appreciated
Though it's offered with the best intentions, there are times when I unsolicited advice isn't welcome. Friends who forward emails about the latest stem cell research, supplements, diets, and detoxes mean well, but it's exhausting and disheartening to write back: "Saw it," "Read it," "Considering it," "Tried it."
The subtext of these messages is that my child is a problem to be solved. That hurts.
I still haven't told my former colleague about my son, and I still feel awkward about it. But I also imagine I'm probably not alone. If there's someone in your life who hasn't told you about her child's diagnosis, maybe she will when she's ready. Perhaps she won't. If you're a parent who feels conflicted about sharing your child's diagnosis, know that there's no proper timeframe, and you don't have to justify your decision to anyone. Ever.