[Paleopsych] NYT: The Child Who Would Not Speak a Word

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The Child Who Would Not Speak a Word
http://www.nytimes.com/2005/04/12/health/psychology/12mute.html
April 12, 2005

    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    situations, especially at school, they are silent and withdrawn.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."