The New R Word
It was particularly cold in the mall, as the A/C worked its way through the end of peak back to school season. My daughter and I stopped at the espresso kiosk for a hot chocolate and a latte in our efforts to warm up. Behind me I heard the echoing vocalizations bouncing off the two-story interior. It was loud, but not alarming … for those of us in the know. I glanced over my shoulder and saw a gangly young man of impressive height—I’d say over six feet tall—ambling behind a caregiver, or perhaps it was his parent. I chided myself for looking their way, but sometimes I think others sense when they’re being looked at by someone who’s been there and done that versus gawked at by someone insensitive to what life is like with a disability.
A young woman and her small daughter joined the line at the espresso bar, and though they were mid-conversation, I could tell they were discussing the young man who had just passed. The daughter, no more than 6 years old, had apparently asked her mother about the man making the strange sounds.
I heard the mother say, “… he has autism.”
“What’s that?” asked the daughter.
“It’s a sickness in your head that makes you do strange things.”
“Does it make you tall?”
This overheard conversation stuck with me throughout the afternoon. A “sickness”? And why did the mother assume the young man had autism? That’s not the first conclusion I would’ve come to upon seeing the young man, and I’m an expert armchair diagnostician. I think it’s fair that the daughter was curious about the young man, and fair that she asked her mother about him. But the mother’s response left me bristly.
This feeling was echoed by my daughter on our way home from the mall.
“Mom, did you hear that woman behind us when we were getting hot chocolate?”
“Yes I did.”
“Didn’t you think her description of autism was a little unfair?”
“Actually I felt it was wildly inappropriate.”
If my 10-year-old daughter understands that the mother’s description of autism was unfair, I suppose I wasn’t being overly sensitive after all.
This incident has led me to wonder, now that society is becoming aware of the inappropriateness of the “R word,” might “Autism” be the go-to substitute word? As I type this, I remember the stab of pain I felt when reading my (NT) teenage nephew’s Facebook comment regarding a goofy picture of himself: “I’m autistic.” I backspaced over my responding comment, “No, but your cousin is, and it’s nothing to joke about.” I chalked it up to kids being kids. For those of us inside the disability bubble, we forget what ignorance is like. We forget that there are people that still don’t understand intellectual and developmental disabilities. We’ve been up to our eyeballs in early interventions and behavior management and whatever the crisis of the day may be for so long that we forget that those around us might not be aware of what’s going on inside our bubble. We hear the growing numbers of diagnoses and think that surely there’s no one left untouched by a disability of a loved one. But then again, there seems to be frequent news reports of tragic incidents involving people with disabilities that are victims of bullying and abuse for no reason other than their disability and the ignorance of the aggressor. Maybe “Ignorance” should be the new R word.