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Page 1: Coaxing Children With Selective Mutism to Find Their Voices - The New York Times

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HEALTH

Coaxing Children With Selective Mutism toFind Their VoicesBy CATHERINE SAINT LOUIS AUG. 17, 2015

DORAL, Fla. — Talking is a skill most children take for granted. But not in thisclassroom.

A dozen young children sit in a circle, dressed for pajama day. Some clutch theirknees or a stuffed animal. A boy in Spiderman sleepwear looks worried but eager ashe musters the courage to speak aloud.

“Who can be the first person to tell me what day it is?” asks Alejandra Golik, astudent therapist leading the session. All the children, ages 6 to 10, know the answer.

After an achingly long pause, a 10-year-old girl mouths, “Thursday.” Herresponse is barely audible.

Still, it’s progress, and here the faintest whisper is applauded. It has beenmonths, sometimes years, since these children have talked to anyone apart fromfamily.

The children have selective mutism, an anxiety disorder, and they are terrifiedof talking in social situations. They may be chatterboxes at home, but at school oraround unfamiliar faces, they are stone-faced and silent.

Experts estimate that roughly one in 140 children are selectively mute; mostelementary schools have at least one student with the condition. Selective mutismcan impede academic achievement and socialization, and lead to isolation and

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withdrawal from rituals like birthday parties and playground friendships.

The problem usually begins before age 5, and early intervention can help.Treatment usually involves cognitive behavioral therapy, with modifications forchildren who don’t talk to unknown adults — therapists included. If C.B.T. fails,drugs like Prozac may be prescribed in low doses.

But now researchers are taking a different tack: intensive, weeklong immersionprograms, like this one run by Florida International University, in which selectivelymute children are put through a variety of exercises to practice what frightens themmost.

Classroom immersion may work more quickly than standard therapy, someexperts say. And it exposes children to the need to speak in front of and with theirpeers.

“With six-hour days, they have time to process, adjust and practice multiplesituations with repeated exposure,” said Jami Furr, director of the selective mutismprogram at Florida International’s Center for Children and Families. “The idea is totranslate gains to a real school setting, where they have the most limited speech.”

Last month’s program run by Florida International enrolled 26 children whowere split into two classrooms, one for elementary school patients and one for thoseyounger than age 6. Out-of-town families arrived days before the classroomimmersion for several three-hour sessions.

Each child was assigned an adult counselor called a “brave buddy,” and the firsttask was to try to speak to him or her. A parent was present until the listeningtherapist could slowly be brought closer. Later, during immersion sessions withoutthe parents, counselors helped each child to navigate days of board games, scavengerhunts and other exercises gradually requiring them to answer questions and speakup. The classes culminated with a trip to a diner for hamburgers.

“We think of it as a bravery ladder where each rung represents a step ofincreasing difficulty, say, speaking to a new person, speaking in a louder voice, ormaybe speaking in full sentences instead of one-word replies,” said Rachel Merson, a

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psychologist at the Center for Anxiety and Related Disorders at Boston University,which runs a similar program to treat selective mutism.

Dr. Yulia Perch, a psychiatrist from Long Beach, Calif., brought her son Leo, 9,to the Florida program. From the first through third grades, she said, he never spoketo his teacher or classmates.

“When he interacted with other children, he couldn’t share himself,” she added.“He couldn’t make jokes. He couldn’t reciprocate. It was just limited intimacy.” Afterhis first individual session, Dr. Perch took Leo to a beach, where he and another boydiscovered a raccoon and ended up talking about the bandit-masked animal andeventually Minecraft.

After the conversation on the beach, his mother said, “he understood the humanreward.”

During the second session, Dr. Perch was astounded when Leo managed awhisper to his counselor. On his fourth day of the immersion program, he was askedthe date in front of the group.

“The 30th,” he said distinctly, abandoning the modest whisper he had used justthree days ago.

“He’s had this so long that I wasn’t sure he would talk at all,” Dr. Perch saidafterward.

Children with selective mutism are often misdiagnosed; pediatricians, parentsand teachers sometimes mistake mutism for shyness. But there are importantdistinctions.

A shy child is always reserved, even at home, but may warm up to a new personafter a few minutes. A child with selective mutism may be outgoing at home andnever warm to strangers.

Delayed treatment can exacerbate the problem, experts say. “Every day you arenot better you are getting worse and getting better at being an avoider,” said StevenKurtz, a psychologist in Manhattan who treats selective mutism.

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Melissa Shattuck, of Huntsville, Ala., was shocked to discover that her chatty6-year-old, Lily, hadn’t spoken a word to classmates at a holiday party. The girl’steacher had assumed Lily was withdrawn at home, too, Ms. Shattuck learned.

“We saw two different Lilys,” she said. Only after the party did Ms. Shattuckrealize that her daughter needed treatment for selective mutism.

Immersive programs now exist in several states. Dr. Kurtz helped start one atNYU Langone Medical Center and another at the Child Mind Institute in New York.Richard Gallagher, a director of the selective mutism program at NYU Langone’sChild Study Center, said weekend sessions would be held this fall at a campus inHackensack, N.J.

In October, Dr. Kurtz plans to post free online educational videos for parents,teachers and caregivers who wish to help children with selective mutism.

Even after intensive help in the Florida program, some children weren’t able tospeak audibly. By week’s end, four of the 26 were still struggling to speak aloud.“Some take it and run with it, and for others, it’s baby steps,” Dr. Furr said.

On the last day, many of the children were able to order burgers and fries ontheir own at the diner. But Elizabeth, a 6-year-old redhead from Texas, onlywhispered her order to her counselor, who relayed it to the waitress.

When the food arrived, Elizabeth was unable to tell another counselor that thechicken nuggets were hers. Given an iPhone that held recordings of her saying “yes”and “no” captured by her parents, Elizabeth pressed the yes button, then dug in.

“It’s definitely frustrating that we didn’t see more progress,” said Jonathan, thegirl’s father, who asked that the family’s last name be withheld for privacy’s sake.

“On the other hand, with just four lead-in sessions and a week of school, she’stalking to someone she had never met,” he added, brightening a bit. “It’s huge.”

A version of this article appears in print on August 18, 2015, on page D1 of the New York edition with theheadline: Scared Into Silence, Little Voices Learn to Speak.

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