Jane Fraleigh always thought her daughter, Kerry, was shy. But as Kerry began her second year of preschool at 4 years old, her mother noticed she was silent in class. Even talking to a classmate or waving goodbye to a teacher was impossible for Kerry.
Kerry is not alone. Her condition, known as selective mutism, is nearly twice as common as autism. According to the Journal of the American Academy of Child and Adolescent Psychiatry, about seven in 1,000 children are diagnosed with selective mutism each year.
The fifth annual international Selective Mutism Conference and Retreat will be held in Chicago July 13-15. More than 200 people are expected to attend. The retreat, for parents and children, will be at the Sheraton Gateway Suites O’Hare in Rosemont and feature forums, workshops and a kid’s camp.
Not many people understand the condition.
"People think the child is refusing or choosing not to speak," says Dr. Elisa Shipon-Blum, who has many titles in her role as head of the Selective Mutism Group Childhood Anxiety Network. But "children with selective mutism are really debilitated. They feel scared and are literally stuck."
Children who have the condition are engaging and able to communicate freely at home but find it difficult or impossible to communicate in social settings. It happens most often when the children are in school or at parties.
That’s how Kerry, now 6, felt.
"I was told by her teacher that she’s shy and she’ll grow out of it," says Fraleigh, of Kenilworth.
Fraleigh, however, knew her daughter’s lack of communication in social situations was more than shyness. At home, Kerry easily communicates with her parents and three siblings.
Then, Fraleigh stumbled upon an article in the New York Times about selective mutism.
"A giant light went [on] over my head," she says. "I had never heard of it. These kids in the article were identical to my daughter."
Selective mutism can be treated in different ways. Shipon-Blum uses what she calls "a whole child approach," where she works with the parent and school to help the child understand his or her feelings and learn how to cope. In 30 to 40 percent of her patients, Shipon-Blum prescribes antidepressants as well.
Kerry is seeing a therapist and has "been making tremendous progress," her mother says.
For more information, visit www.selectivemutism.org.