On a sweltering August day, I decide to spend the afternoon with J, my 3-1/2-year-old, riding the trolley that cruises around our city. J is autistic with limited speech, but his smile tells me he agrees with my idea.
"Should I follow you in the car?" my husband, Karl, asks worriedly.
"We'll be fine," I say confidently. J's waiting patiently at the trolley stop.
Karl's worries aren't unfounded. Because J can't communicate functionally, he gets frustrated easily. Add to that his hypersensitivity to stimuli, and we never know what will happen.
J boards the trolley: no problem. Reluctantly, Karl drives away.
Today's ride is free because it's so hot out, but that also means it's crowded. The clanging of the bell, which sounds so quaint on the outside, is much louder on the inside.
Almost as soon as the doors swing shut, J shouts, "No! No! No!" and jumps off my lap. "OK, let's get off, then," I say at the next stop. But J grabs onto a pole and resists with a howl. He's descending into the "point of no return," where his brain short-circuits into an unstoppable outburst.
By the next two stops, he's causing such a ruckus that I carry him off like a flailing bag of potatoes. We've had the misfortune to debark at Thayer Street, the bustling center of the neighborhood around Brown University. We're in front of a restaurant that has metal sidewalk tables, and J is flinging himself to the filthy ground as I do my best to keep his head away from the sharp edges of the tables.
"Bring him over here!" A white-haired man sitting at one of the tables motions severely to me. Older folks often see a child who "just needs a good lickin'." I ignore him, but J's siren-like screams have now attracted a crowd. Some parents with toddlers in tow shake their heads; I can hear them speaking smugly among themselves: "Glad our kids know how to behave."
In the meantime I'm on my knees, trying to get J to stand upright. He pulls my hair, tears my favorite necklace from my neck. When he realizes I'm trying to get him on his feet, he twists like Houdini and kicks off both of his sandals. I put him in a modified jujitsu hold, scooping him up by his bottom. He wails even louder. A few people openly glare, hands on hips. One woman even has her cell phone out--is she debating whether to call 911 because she thinks I must be abusing this child?
A homeless man approaches. "Hey, you got some kinda problem here," he giggles, obviously finding our situation hilarious.
"Marie? Is there anything I can do?" I look up, sweat streaming, to see my friend Deborah, a Brown professor.
"Tell these people to stop staring at me," I say. Deborah turns, but the crowd, seeing that an elegantly dressed professor has stopped to address the bad mother, is dispersing. Deborah helps me get organized and gracefully disappears.
I offer J his water bottle, making him ask for it properly. This mental activity of finding the word "water" distracts him enough that I can buckle on his sandals, get up--my knees blackened and bleeding--and hustle him away. When we arrive home, Karl asks how the trolley ride was. I burst into tears.
This is life with an autistic child. J looks like a healthy, beautiful little boy, but his autism diagnosis at the age of 3 is not the most dramatic thing that's happened to him. At 18 months he was diagnosed with a spinal tumor, and he spent the better part of a year in a body cast and a wheelchair.
I think back almost wistfully to that wheelchair. Then, people went out of their way to help us. "Oh, the poor brave little boy with cancer!" But no one looks at J in the midst of a tantrum and offers to help the brave little boy with autism.
My urge during J's fits is always to scream, "My son has a neurological disorder!" But I've decided whatever satisfaction I might get isn't worth what it could do to J: who knows how much he understands, and despite what doctors tell us about the incurability of autism, who knows if he'll always be this way?
Those out there who are so certain we are bad parents should take heed of the alarming rate of autism: a Centers for Disease Control study found that as many as one in 150 children had it in one community. That translates to one in 68 families, according to the Autism Autoimmunity Project. The next time you are inclined to judge a parent, stop and think. There might be more to it than "bad parenting."