I really believe that anxiety, which can be good for us in terms of survival, "the fight/flight mechanism" is our enemy ... those of us who are OVERLY sensitive, and I think that includes many of us here w/DP being a manifestation of "overload" of some sort.
This NYTimes article on selective mustim in very young children with severe social anxiety is fascinating. Didn't know where else to post it as we are so anxiety ridden I thought it would be lost in the "other medical forum."
Curious re: any comments. Anxiety is an integral part of our lives and I believe we are on a spectrum. I consider myself at least, overstimulated by events that wouldn't bother others... I certainly was as a child. Overly anxious, though my mother's technique was "shut up and don't complain if you feel weird."
----------------------------------------------------------
New York Times
April 12, 2005
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withdrawn.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
Best,
D
This NYTimes article on selective mustim in very young children with severe social anxiety is fascinating. Didn't know where else to post it as we are so anxiety ridden I thought it would be lost in the "other medical forum."
Curious re: any comments. Anxiety is an integral part of our lives and I believe we are on a spectrum. I consider myself at least, overstimulated by events that wouldn't bother others... I certainly was as a child. Overly anxious, though my mother's technique was "shut up and don't complain if you feel weird."
----------------------------------------------------------
New York Times
April 12, 2005
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
Best,
D
