Mental Health

Anxiety disorder can rob children of their voices

The disorder still is referred to as “rare,” but the latest figures from the American Academy of Child and Adolescent Psychiatry show that about seven in 1,000 children are believed to suffer from selective mutism.

MANSFIELD, Texas – Emily Chapline loves books and the color pink. She bosses her 5-year-old brother, Blake. She can tear into a McDonald’s Happy Meal with the best of them. The 9-year-old is both typical and enigmatic.

When asked about her favorite book, Emily’s chocolate eyes dance behind her eyeglasses. She leans into her mom, and with her small hands cups Jana Chapline’s ear and whispers. There is silence.

  
The disorder still is referred to as “rare,” but the latest figures from the American Academy of Child and Adolescent Psychiatry show that about seven in 1,000 children are believed to suffer from selective mutism.

 MANSFIELD, Texas – Emily Chapline loves books and the color pink. She bosses her 5-year-old brother, Blake. She can tear into a McDonald’s Happy Meal with the best of them. The 9-year-old is both typical and enigmatic.

When asked about her favorite book, Emily’s chocolate eyes dance behind her eyeglasses. She leans into her mom, and with her small hands cups Jana Chapline’s ear and whispers. There is silence.

“Nancy Drew,” mom repeats for my benefit. “I love those books!” I reply. Emily warms up a bit.

But, still, she hasn’t uttered a word to me.

I had been hanging out with Emily for a few days this spring – at school, in occupational therapy and during dinner with her family. I selfishly was hoping to hear what I imagined to be the sweet voice of innocence, curiosity and joy to match the personality of the spirited little girl before me.

But Emily doesn’t speak – not to me, not to her teacher, not to her occupational therapist, not to most of her classmates. From the time she was able to, Emily has spoken only to a select few, including her mom, dad, brother and grandparents. She also has two “talking friends,” peers she converses with.

Emily was diagnosed five years ago with an extreme form of shyness called selective mutism after her mom had fought endlessly to get help for her daughter, who had encountered medical and emotional issues since birth.

“I did not want her to go through school being labeled as a dumb child,” Jana says.

Selective mutism is a complicated childhood anxiety disorder distinguishable by a child’s inability to speak in social settings, such as school. Youngsters with the disorder speak normally in settings where they feel secure and relaxed.

The disorder still is referred to as “rare,” but the latest figures from the American Academy of Child and Adolescent Psychiatry show that about seven in 1,000 children are believed to suffer from selective mutism.

Only within the past 10 years has selective mutism attracted the attention of scientists and doctors. It is recognized by the American Psychiatric Association and listed in the psychiatric diagnostic manual.

“Child anxiety in general has just recently been recognized, and selective mutism is even lagging behind the rest of the field,” says Dr. Lindsey Bergman, associate director of the University of California, Los Angeles Child Obsessive-Compulsive Disorder and Anxiety Program.

Experts recommend treatment as early as possible, although it is unclear how untreated children function and cope as adults, Bergman says.

Neither of Emily’s parents is shy, and, in fact, mom Jana appears to be much the opposite. As the North Texas coordinator of the Childhood Anxiety Network, Jana has tirelessly networked for understanding and change. The group held its first Texas meeting in April.

“So many have never heard of the disorder,” she says. “We had difficulty with our school district at first because schools simply don’t know what services to offer an anxiety-ridden student.”

Emily has come a long way but still has far to go.

The third-graders at Mary Jo Sheppard Elementary in the Mansfield Independent School District host a tea for their parents this May morning to celebrate their first storybooks.

Emily loves to write and enjoys reading. When teacher Lee Ann Brothers told the class they would create their own storybooks at the end of the year, Emily became excited.

She worked hard on her tale, The Two Hungry Bunnies. The children wrote and drew their stories in sturdy board books for the big event. They would read their stories at the tea. However, as the time neared, Emily became scared.

“She got more and more anxious. She asked me to read her story if she could not,” Jana explains.

Now, at the tea, the class sits on the floor in the school library. Jana sits, at Emily’s insistence, on the floor next to her daughter, who squats next to Asha Smith, a talking friend she has known since first grade.

One by one, Brothers calls on students to sit in the grown-up rocker and read their stories. After a third of the class has had a turn, Brothers asks, “Emily, you want to go next?” Emily shakes her hung head. No.

Other classmates read about dangerous storms and shrinking machines. Emily claps enthusiastically for each.

“When are you going to read your story?” A classmate sitting nearby asks politely. Emily doesn’t respond.

After a number of private exchanges with Jana, it is clear that Emily won’t be reading. The last student vacates the rocker. It’s Emily’s turn, but it’s Jana who goes up to read.

“The Two Hungry Bunnies by Emily Chapline,” Jana begins.

Emily lowers her head and hugs Asha as Jana continues.

“They found some carrots, but they were rotten. So they kept looking. …

“Next, they went to the farm … they found some fresh grass and flowers. Yay, finally! …

“The bunnies went home and went to bed. … The End.”

Emily doesn’t look up once, not even when her classmates clap wildly.

Brothers rallies the young authors, and Emily comes to life when the teacher says, “Next year, you’ll have to write a story for your TAKS test, so we are off to a great start.”

At party time, Emily regroups and even enjoys the celebration, sitting at a table with classmates eating cookies and giggling at Asha’s jokes.

In five years, she has come a long way with therapy and has been able to overcome the social phobia part of the disorder, her mom says.

Emily joined the class this spring and in a short period made notable progress. She had attended nearby Alice Ponder Elementary since kindergarten.

Earlier in the school year, Jana successfully lobbied the school district for a formal session to determine how her daughter could be better mainstreamed in the classroom. The school and Brothers were a good fit for Emily. “There has been a world of difference since she’s been in this class.”

It has been win-win, says Brothers, who offered the otherwise outgoing Emily nonverbal ways to enjoy class participation.

“When we’re having group instruction, I tend to ask questions that I can say, `Class, raise your hands if you think this. Or, in math, `Show me your answer on your fingers.’ Emily raises her hands, nods and shakes her head no, or she points.”

Emily flourishes in her after-school occupational therapy sessions, flying high in the hammock or whirling around on the platform swing.

The routines help develop fine and gross motor movements that many selective mutism patients seem to lack.

Occupational therapist Stephanie Patterson at Our Children’s House at Baylor in Waxahachie, Texas, gives Emily a push on the platform swing. Emily lies on her stomach and, with her legs and feet, thrusts her body from one side to the other.

“Oh, Em, I don’t know how you get your body to lay like that. How many more days before school’s out?” the therapist asks.

Emily shows seven fingers.

“You get out early Thursday?”

Emily nods.

“Great,” Patterson says.

The two have been communicating this way for almost a year. “She has ways of indicating her needs, and I don’t pressure her. I want to remove all the anxiety so that it will be comfortable one day for her to talk,” Patterson says.

The session ends with a hug and a sweet treat from Patterson.

“We had no idea until a year ago why all the motor stuff mattered,” Jana says.

Last summer, at a national Child Advocacy Network conference, an expert explained the impact of the disorder on the motor areas. “Things we used to think were just Emily quirks were actually sensory system development issues.”

Jana has had an exhausting day with kids’ doctor’s appointments, after-school pickup and Emily’s therapy. She is ready for husband Kent to join her and the kids so that she can have a short respite.

“They are so different when he’s around, calmer,” she says.

In the play area at a McDonald’s restaurant, Emily bites into her hamburger and scoots off to find brother Blake. Kent, who has come from work at Dallas’ KTVT-TV (Channel 11), walks in.

He and Jana chat for about 15 minutes before Emily spots him. She rushes to him and literally gets in his face.

They go nose-to-nose as she talks about the day, especially swinging during therapy.

“How do you go so fast, Em?” he asks in a commanding voice.

“Practice,” he says, repeating out loud what she has whispered.

The father-daughter time is precious. He relies on Jana to keep him up on the latest selective mutism advancements and Emily’s day-to-day progress. It frees him to “just be Daddy,” Jana says. “The kids need that.”

“I don’t know nearly as much as Jana does,” Kent admits.

But he knows that his daughter has made tremendous strides since his wife has dedicated all her free time to finding resources and answers for selective mutism that will benefit many families.

“I’ll be honest, I worry about the future,” Kent says. “I worry about her in college. I worry about her finding a job that she can do that’s going to require the kind of communication that’s so difficult for her.”

Jana has a different take. She has developed confidence that her little girl will find a place in the world. She hasn’t always felt that way.

“I have met adults who grew up with this who are amazing professionals in all kinds of careers – teachers, psychologists, authors.

“Emily has come a long way. She is going to find her way. She wants to please people. She has such incredible desire to connect with people and such a need for that.”

WHAT IS IT?

Selective mutism is a disorder in which a child who speaks in settings such as the home is unable to do so in social or public situations such as school, in playgroups or at a doctor’s office. It is seen most often in children younger than 5 in school settings.

It differs from mutism, which renders a person unable to speak in any situation.

Parents initially may think the child is refusing to speak, but experts say a child suffering from selective mutism has a social anxiety that prevents him or her from talking in some settings.

Selective mutism is not caused by a communication disorder such as stuttering and does not occur as part of a mental disorder such as autism. It also should not be confused with a situation in which a child is hesitant to speak because his or her native language is not used.

Sources: Selective Mutism Group-Childhood Anxiety Network, UCLA Child OCD and Anxiety Program

SIGNS OF SELECTIVE MUTISM

Parents who suspect their child may have selective mutism should look for these signs:

_The child fails to speak in school or other social settings, but can speak normally in comfortable settings such as home

_Selective mutism persists for at least one month

_The difference between a shy child and one with selective mutism is that the shy one will warm up to you after an hour and the other will not.

HOW TO RESPOND

If you encounter a child with selective mutism, a few simple courtesies can help put the youngster at ease:

_Talk to the child in a normal way but don’t expect an immediate response.

_Get down and play at the child’s level and find out what interests him or her.

_Minimize eye contact if it appears to make the child uncomfortable.

_Phrase questions and comments so that a nonverbal response is possible.

_Don’t insist that the child speak, and don’t ask why he or she is not speaking.

_Don’t make a big deal if the child speaks. Such a reaction could cause a setback.

_Enjoy and get to know this child who probably has a lot to say but needs more time and help saying it.

TREATMENT

Treatment of children with selective mutism typically involves behavior modification, family support and school participation. A doctor may recommend medications to treat symptoms of anxiety and social phobia. If the disorder goes untreated, symptoms can become worse.

“Many times, parents will wait and hope the child outgrows their mutism, but without proper treatment most do not and end up going years without speaking, interacting normally or developing proper social skills,” says Dr. Elisa Shipon-Blum, an expert on the disorder and a clinical assistant professor of psychology and family medicine at Philadelphia College of Osteopathic Medicine. Shipon-Blum also is executive director of the Selective Mutism Group-Childhood Anxiety Network, a national nonprofit group that has helped raise awareness. Her daughter suffers from the disorder.

“When the disorder is not treated, it’s hard to clinically say what will be the outcome of the child in adulthood,” says Dr. Lindsey Bergman, associate director of the University of California, Los Angeles Child OCD and Anxiety Program.

By Jean Nash Johnson
The Dallas Morning News
SOURCE:- University of California, Los Angeles

Reviewed by Lindsay 02-10-10

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