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added Apr.12

The Child Who Would Not Speak a Word
by Harriet Brown

 

Christine Stanley will never forget the call. Two weeks after her daughter Emily started kindergarten, the teacher phoned in a panic. Emily would not color, sing or participate in any classroom activities; in fact, she would not say a word to anyone.

It was not the first time Christine had received such a call. Emily had not talked at preschool, either. She did not make eye contact with store clerks or talk to nurses at the pediatrician's office. She ran off the playground if another child approached.

Mrs. Stanley asked her sister, a special education teacher, what she thought. Mrs. Stanley had to explain the problem because at home and with family Emily's behavior was perfectly normal. Her sister mentioned something called selective mutism, but quickly said that couldn't apply to Emily.

"She told me, 'Those children are emotionally disturbed and have been abused,' " Mrs. Stanley recalled. But once she started reading about the condition, she said, "I knew it really was selective mutism."

Experts say that Emily's story is typical of children with selective mutism. At home, they behave like typical children, but in social situations, especially at school, they are silent and withdrawn. They might talk to grandparents but not to other relatives; they might whisper to one other child, or talk to no one. Some do not point, nod or communicate in any other way.

Fifteen years ago, these children were known as elective mutes, and their silence was seen as willful and manipulative. "If you look at psychiatry textbooks from around 1994," said Dr. Bruce Black, a psychiatrist in Wellesley, Mass., and an early researcher on selective mutism, "you'll see stated as a fact that these were stubborn, oppositional kids, and their refusal to speak was a manifestation of that."

Another popular belief was that selective mutism was a form of post-traumatic stress disorder - what Dr. E. Steven Dummit, a staff psychiatrist at the Children's Village in Dobbs Ferry, N.Y., calls the"Tommy rock opera" theory of the disorder.

"It's an appealing story, that these kids are keeping some secret about something terrible that's happened," he says. "None of the children I've seen became silent as a result of trauma. But I can't tell you how many families have told me they were suspected of abuse because their child was not talking in school."

The diagnosis was changed to selective mutism in the fourth edition of the American Psychiatric Association's diagnostic manual. The semantic change reveals a fundamental shift in how these children are perceived and treated.

Most researchers now agree that selective mutism is more a result of temperament than of environmental influences. In the early 1990's two studies, one by Dr. Dummit and one by Dr. Black, showed that children with the disorder were not just shy; they were actively anxious. "We ended up concluding that the kids had social anxiety disorder, and the selective mutism was a manifestation of that," Dr. Black said.

Everyone has some level of social anxiety, he noted. "I'm quite comfortable in front of a group," Dr. Black said. "But if I went into a party full of famous older psychiatrists, I might stare at my feet for five minutes before I started talking. It might look like I had selective mutism."

Until recently, the disorder was thought to be extremely rare, affecting about 1 child in 1,000. But a 2002 study in The Journal of the American Academy of Child and Adolescent Psychiatry put the incidence of selective mutism closer to 7 children in 1,000, making it almost twice as common as autism.

Selective mutism, experts say, probably represents one end of a spectrum of social anxieties that includes everything from a fear of eating in public to stage fright and agoraphobia, a fear of open spaces.

Despite its prevalence, selective mutism is still widely misunderstood and often ignored. Even after realizing that Emily had the disorder, Mrs. Stanley was not able to get her daughter help. Before Emily started kindergarten, she asked the principal what to do, and was told, "A lot of kids are shy; she'll grow out of it."

Mrs. Stanley recalled, "We figured, O.K., maybe it's not as bad as we think." But two weeks into the year, Emily's kindergarten teacher phoned. "She said, 'Emily can't color or do anything; she just sits there and reads a book,' " Mrs. Stanley said. "She had no clue what to do. And neither did we."

One of the most puzzling aspects of selective mutism is the fact that children stay silent even when the consequences of their silence include shame, social ostracism or even punishment. This paradox may be explained by the fact that at the heart of the disorder is the instinct for self-preservation, the natural urge to avoid frightening situations.

"They become very avoidant of social interactions," said Dr. Elisa Shipon-Blum of Philadelphia, a physician who has treated hundreds of children with the disorder. "They don't know how to engage. They learn to avoid eye contact; they learn to turn their heads. They learn not to communicate."

Experts say that may be because the children in a state of physiological defensiveness brought on by the perception - real or imagined - that they are in danger.

"These children pick up cues in the environment that trigger an adaptive response, which puts them either into a fight-or-flight situation or leads to a shutdown," said Dr. Stephen Porges, director of the Brain-Body Center at the University of Illinois at Chicago."Their bodies have said, 'This is not the place you should be in.' Their behavior is not defective, just adaptive in the wrong setting."

Few doctors are willing to treat selective mutism, and fewer still achieve results. When Emily Stanley's school insisted on an official diagnosis, the family wound up traveling from their home in Atlanta to a doctor in Connecticut. "Every local psychologist I called said either they'd never worked with a child like this before, or they had and hadn't been successful," Mrs. Stanley said.

When the school pressured the Stanleys to do more, the Connecticut doctor recommended antidepressants. In the early 90's, Dr. Black did one of the first studies of Prozac for selective mutism, when he was a researcher at the National Institutes of Mental Health. It was a success.

One subject was a seventh-grade girl who had never said a word in school. "The principal had known her for eight years and had never heard her voice," Dr. Black said. "After three weeks on Prozac, she started talking in school." (Dr. Black said that he had been a paid consultant for Eli Lilly, the maker of Prozac, and for SmithKline Beecham, but that the pharmaceutical industry had not financed any of his research.)

Many clinicians now prescribe fluoxetine, the generic version of Prozac, for selective mutism, usually combined with cognitive or behavioral therapies.

Fluoxetine and other antidepressants in the class known as selective serotonin reuptake inhibitors, or S.S.R.I.'s, can loosen inhibitions - a factor in explaining their usefulness for social anxiety. This also means that they are not for everyone. After starting on antidepressants at the end of kindergarten, Emily Stanley began talking in school. But she also began exhibiting inappropriate behaviors, which ended when the medication was withdrawn.

Behavioral and cognitive therapies that rely on classic desensitization techniques - gradual exposure to frightening situations, with a lot of positive reinforcement - can also be successful, either on their own or combined with antidepressants.

"Everybody says to these kids, 'Say goodbye to your teacher,' " said Dr. R. Lindsey Bergman, associate director of the University of California, Los Angeles, Child O.C.D., Anxiety and Tic Disorders Program.

"That's way too hard to be the first step," Dr. Bergman said. "They might start with something nonverbal, or with making a sound, and work up to face-to-face communication. I have one child who's working on saying 'mmm-hmm' instead of nodding."

Most of these therapies require heavy involvement on the part of parents. Mary Egan-Long, a financial analyst in Bergen County, N.J., took a year off from her job to work with her 6-year-old daughter.

"I have Jackie exposed to every extracurricular activity I can find," she said. "We go to school early two mornings a week to feed the animals so she can bond with the science teacher. Every place she goes, I need to smooth the way."

Pediatricians often tell parents not to worry, their children will outgrow the problem. That reassurance is well-meaning but misguided.

"If a child still has this at age 7, and it's moderately severe, chances are it's going to be a lifelong struggle," said Sue Newman-Mercado of Fort Lauderdale, Fla., who also has twin daughters, 23 years old, with selective mutism.

In 1991, Ms. Newman-Mercado and Carolyn Miller of Charleston, W.Va., founded the nonprofit Selective Mutism Foundation. They remain the foundation's co-directors.

In fact, most experts say, the earlier the intervention, the better the outcome. The family of Robbie Fishman, now 4, learned that he had selective mutism just before his third birthday. The pediatrician wanted to refer Robbie to a developmental psychiatrist, but his mother, Anne Fishman, a special education language teacher in Yardley, Pa., refused.

"I had a feeling they would diagnose him with something on the autistic spectrum, and I knew he was not," Ms. Fishman said.

Robbie began weekly visits to Dr. Shipon-Blum of Philadelphia, who put him on a low dose of antidepressants. "She told me to set up a consistent play date for Robbie," Ms. Fishman said. "She told me he needed a classroom aide. We learned to have the teachers and preschool director not force him to talk, or force eye contact. We were all doing the wrong thing. I was always forcing him, and I was making his anxiety worse."

A year later, Robbie is off the drug and functioning well at school.

"He's not Mr. Social Butterfly," Ms. Fishman said. "But at least he can make eye contact and respond to the teacher. Before, people assumed he was autistic. Now they just think he's a little shy."


Copyright 2005 The New York Times Company

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