“There’s tape in my belly and all the words are stuck there,” my son Declan said to me, after another long day of complete silence. His words had come 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 three, 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 myself. 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. And 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 real mental disorder often associated with social phobia. Despite this fact, teachers, pediatricians, and other people too often dismiss this affliction as mere shyness. “He’ll grow out of it,” we’ve 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 SM requires.
Declan has always had a reserved temperament. As a toddler, he was never one to perform for strangers, refusing to say “hi” or “thank you” 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, and it took a while for me to notice that Declan 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: Declan had started preschool, I was pregnant, we were preparing to move. He stopped talking first to his teachers and classmates, then to his nanny 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, Declan didn’t say a word to anyone for nearly two weeks straight. At the time, record snowfalls were blanketing the Washington, D.C., area where we live. Our house was suddenly unbearably quiet, like the world outside our door. I went nearly mad trying to force my son to talk.
In those rare moments when he was verbal, Declan’s self-awareness 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 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 the condition was once called “elective mutism,” as if children were being willfully defiant with their silence. The psychiatric profession changed the name in 1994 to reflect its current understanding that mutism is actually an involuntary anxious response. 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 Sir 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.
Our son will not have that same fate – not if I can help it. 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 Declan to speak, things have improved. Declan’s words have returned in stages. He resumed talking to us at home, and then to friends on playdates, and eventually to his nanny. With the help of his caring teachers, he’s gotten more and more comfortable at school too, although he’s still not verbal there.
On the bright spring day I gave birth to our baby daughter – a day so weighted, so fraught with change that I was sure Declan 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, he loudly said, “Where’s the baby?” I exhaled.
But we have a long way to go. Declan is still mute in school. He still has a lot of anxiety, more than any four-year-old should. And I still have a hard time getting people to understand that selective mutism is much more than shyness. But I’ll keep talking about it. I am finding my voice, just as Declan is finding his.