If you hang around the autism community for any length of time, you’re bound to hear plenty of phrases you’re NOT supposed to say to autism parents. Which begs the question, what do you say? What should you say?
For the longest time, I didn’t have an answer. I didn’t know what I wanted people to say to me when I said, “He has autism.” I didn’t want to hear platitudes. Why do you think I want to be consoled? I don’t. Acknowledged? Yeah, maybe it would be nice to have the statement acknowledged in some way, but what way? Today, it happened. I said, “He has autism,” and she said, “Oh, I’m kind of ignorant to autism. What is that like?”
I was so blown away by her genuine interest, I didn’t have an immediate answer. I smiled nervously and exhaled, “It’s parenting.” I waited a moment, and said, “Every child has their unique set of characteristics and traits. He does too. If you’re asking what autism is…well, it’s a neurological disorder. He’s wired differently. His senses, perception, understanding of the world around him, it’s very different from the average person. What’s it like? It’s a rollercoaster,” I laughed. “But, honestly, it feels very normal to me, now. Of course, that wasn’t always true. It’s amazing what can become your normal…”
“Oh, that’s true. I feel like I was born to be a taxi cab driver. I’m here to cheer from the sidelines. I go to sleep at night hoping their childhood isn’t a smear of a memory– that I’m not messing them up in some monumental fashion… And, if I am, I probably won’t know about it until their twenties. At which time, a therapist will send them to tell me what a piss poor mother I was for all those years,” she laughed. “Is there a cure for autism?”
I flashed an uncontrollable smile, knowing the impact that simple question continues to have on the autism community. “No, there are no known cures for autism. There are a lot of therapies and interventions, which can help people with autism live more productive lives.”
I stood there, soaking up the moment, realizing how unique and comforting it was to find some common ground with a mother whose world (before this moment) appeared drastically different from mine. I found myself holding my breath. It was kind of like being picked first at recess. The excitement of feeling important, included, and part of something. I realized while I was thinking all these things, I was still sort of holding my breath. Maybe, she thought I was thinking of her cure question. She had an inquisitive look, waiting for me to explain further. “It’s so funny you mentioned your endless shuttling. I feel the same. Except, instead of sporting events or conventional activities, I’m shuttling him to therapies. Still cheering, still wondering to what extent I’m screwing up. I console myself with cookies.” And, we laughed some more.
She continued to ask questions, and I inquired about her children. I was awestruck. For a few moments, a mom of typical children and a mom on the spectrum with an autistic son shared a gift, a moment, something similar, and it was priceless to me. To her, it may have been just another conversation, another few minutes of mommy talk, but to me it was a rare occasion, a moment to remember—it was something worth writing about. We talked autism, neurotypical, meltdowns, tantrums, perseveration, common core, exhaustion, and ended it with talk of caffeine addiction. It felt pretty normal, genuine, and she never apologized. She didn’t have sadness for me or my child in her voice. She didn’t give a knowing nod of pity or sympathy. We chatted– two moms waiting in line for coffee. It occurred to me after I left– say this. This is what I want when I tell someone we have autism. Say this.