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situations, especially at school, they are silent and withdrawn.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
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
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
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
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
"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
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
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
Many clinicians now prescribe fluoxetine, the generic version of
Prozac, for selective mutism, usually combined with cognitive or
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
"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
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,
"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
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