“There’s tape in my belly and all the words are stuck there,” my son, Matthew,* said to me after another long day of complete silence. His words came forth in a rush, like a flash flood in a slot canyon. Quickly, I tried to understand what he was experiencing, to keep him talking, to stave off that mysterious force that would make the words disappear again. I knew it was only a matter of time.
At the age of 3, my son was diagnosed with selective mutism (SM), a rare anxiety disorder in which people speak comfortably in some places or with some people and are struck utterly mute in other situations. For parents, it is a sad, confounding and frustrating condition. Many times I felt so desperate to hear my son’s voice that I wanted to pry his mouth open and pull the words out. For children, SM can be painfully debilitating and can hinder their ability to advance in school, make friends and participate in activities. If left untreated, it can lead to adult anxiety and depression. In one notorious case, SM may even have contributed to a heinous act of mass violence.
SM is recognized by the American Psychiatric Association as a psychological affliction associated with social phobia. Despite this fact, teachers, pediatricians and other people too often dismiss the condition as mere shyness.
“He’ll grow out of it,” we’ve often been told. “My kid was shy too and he’s fine.”
Dr. Elisa Shipon-Blum, a nationally recognized expert on SM, has written that the disorder is “the most misdiagnosed, mismanaged and mistreated anxiety disorder of childhood. Children with selective mutism truly suffer in silence, and yet most people completely misunderstand the child’s silence.” This patronizing attitude can deprive mute children of the therapy or medication—and even just the empathy—that treating SM might provide.
Matthew has always had a reserved temperament. As a toddler, he was never one to perform for strangers, refusing to say “hi” or wave bye-bye on command. I once hosted a playgroup in my small basement, parents and children jumbled together like rag dolls in a trunk. It took a while for me to notice that Matthew had disappeared.
I found him alone in his bedroom, curled up on the floor. “I like it better by myself,” he said. As an introvert too, I thought little of it at the time. Then his words started to disappear.
It was a period of transition: I was pregnant, we were preparing our house for a possible move and Matthew had just started preschool at Calvary Children’s School in our South Arlington neighborhood. He stopped talking first to his teachers and classmates, then to his babysitter and extended family, and then, terrifyingly, to my husband and me. The periods of mutism lasted longer each time, from one hour to four hours and then 36 hours and longer, while the periods of speech shrank.
At one point, Matthew didn’t say a word for nearly two weeks straight. It was the winter of 2010, with record snowfalls blanketing our area. Our house was suddenly unbearably quiet, like the world outside our door. I nearly went mad trying to force my son to talk.
In those rare moments when he was verbal, Matthew had a self-awareness that was achingly beautiful. “I feel like the words are locked behind a door,” he once said, “and I don’t have the key.”
When he was mute, I would ask him where the words were, and he would usually point to his feet. If they were up to his belly, it was a good day. They were never near his mouth.
As an antidote to my own anxiety, I educated myself about selective mutism. I learned that SM is usually diagnosed during the preschool years, when children face the first real performance pressure of their lives. I learned that while SM is not on the autism spectrum, the one is often confused with the other, and behaviors and treatments can be similar. I even found a little ditty about SM written by Paul McCartney that goes partly like this:
She’s given up talking
Don’t say a word
Even in the classroom
Not a dickie bird
What disturbed me most, however, was the story of Seung-Hui Cho, who killed 32 people and wounded 25 others at Virginia Tech in April 2007. Along with schizophrenia and depression, Cho suffered from selective mutism. He was treated with medication and therapy but apparently never cured. On his dormitory wall, he had written telling lyrics from the song “Shine” by the band Collective Soul: “Teach me how to speak, teach me how to share.” He ultimately made his voice known in the most gruesome way possible.
I was determined that our son would not have that same fate. Our pediatrician referred us to a wonderful psychologist who specializes in childhood anxiety and SM. Through therapy, and by changing our parenting style and removing all pressure on Matthew to speak, things improved. His words returned in stages. He resumed talking to us at home, and then to friends on playdates, and eventually to our babysitter.
On the spring day I gave birth to our daughter—a day so weighted, so fraught with change that I was sure Matthew would lose his words again—I was relieved to hear from my in-laws at home that he was still talking. When my husband brought him to visit me in the hospital, Matthew loudly said, “Where’s the baby?” I exhaled.
This past September, Matthew started the pre-K class at his school, where he had been completely mute for nearly two years. I had high hopes for the school year—not that he would talk, necessarily, although that hope was always there, but that he would be happy. Loose. Unbound. I dropped him off on the first day with a kiss and a wave. He gave me a tight-lipped smile.
A half-hour after I got home, my cellphone rang. I was alarmed to see that it was Matthew’s teacher calling. “What happened?” I answered. “What’s wrong?”
“Guess who just had a whole conversation with me in class?”
“Who?” I asked, clueless.
“Matthew!” she said. “He’s talking!”
It was a moment to savor, one I’ll never forget. Even better, he’s talked in school every day since.
But Matthew still has anxiety, more than any 5-year-old should. He’s starting kindergarten this fall, with new challenges that will test all of us. Will he talk? I can’t help but wonder. Whatever happens, my hopes remain as they ever were—that he be happy and unbound, ready to give voice to all the unexpected joys that life will bring his way.
*Name has been changed for privacy. A version of this essay first appeared on Babble.com.
From her home in Aurora Highlands, Kim O’Connell writes a blog about selective mutism, social anxiety and parenting sensitive children at www.bloomingboy.com.