# Extreme Anxiety - Selective Mutism in Children as an example



## Dreamer (Aug 9, 2004)

*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."
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*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withdrawn.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


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## ShyTiger (Apr 1, 2005)

I have seen a child treated for this by teaching them to use sign language. Then graduall desensitization to talking in school. Eg. had the child come in to school early with parents and would get her to speak, then adding a known and liked teacher, then another student ect.It was very successfull but was a long process.


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## Dreamer (Aug 9, 2004)

ShyTiger said:


> I have seen a child treated for this by teaching them to use sign language. Then graduall desensitization to talking in school. Eg. had the child come in to school early with parents and would get her to speak, then adding a known and liked teacher, then another student ect.It was very successfull but was a long process.


Interesting. I honestly can relate to this. Though I grew to be very gregarious with friends in school, I was always an anxious wreck, since I can recall. I was also quiet in Pre-K -- "scared" of the teacher. I always had problems giving presentations/reports, answering questions. Hesitant to answer questions, even if I knew the answers. This is still me. And I have done a ton of performing -- acting/singing. Still a nervous wreck.

I know I didn't have this, but man, anxiety can be immobilizing, and I agree, with any child to work with this must be extremely difficult, but it would seem a child can improve greatly with effort.


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## ShyTiger (Apr 1, 2005)

Yep i relate to this as well. I do not speak in some situations. In alot of situations. Mine i think is because of dp issues around my speech and voice and is definatly anxiety related. I don't remember much of when i was young but i do remember not liking to talk-it just got progressivly worse as i got older. It takes me a while to speak in new situations and environments. But when im comfortable sometimes you can't shut me up! I worked a while in a special development school and most with children with autism. Selective mutism was quite commen. I related a lot to these kids and always wondered if dp and autism was related-as it seems to be about the way things are perceived, and fear about how things are percieved? Have i gone off topic??We did a lot of desensitizing work for lots of different things and i think it's a great tool.


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