March 27, 2006 -- Imagine a world where anyone and anyplace outside the comforts of home elicit fear and anxiety so paralyzing that you shut down and cannot speak.
That's the reality for 7-year-old Morgan Galie, who suffers from a childhood anxiety disorder called selective mutism.
"They feel afraid," said Dr. Elisa Shipon-Blum of the Selective Mutism Anxiety Research & Treatment Center in Jenkintown, Pa. "Many of them say the words won't come out. Their voice box feels like it's closing up. Their stomach hurts. Their head hurts. Their body won't let them speak."
"She describes it as the words get stuck in her toes," said Morgan's father, Vincent Galie. "So, it must be just nerve-wracking to not be able to talk when you want to."
Very Different Than Shyness
At home, Morgan is a different child, her parents say.
"She's the loudest kid in the house, running around, you know, a normal kid, but very loud," Vincent Galie said.
"She's a chatterbox," her mother, Colleen Galie, said. "She loves to talk. She loves to tell me about her day at school, all her friends."
It's not surprising that Morgan acts so differently at home. Selective mutism is the result of extreme anxiety, usually in group settings or around strangers, Shipon-Blum said.
What causes this disorder is not exactly known. What is known is that it has a genetic factor and usually appears when a child is first introduced into the social situation of preschool or school. It is, however, very different than everyday shyness.
"The difference between shyness and selective mutism is ability to function," Shipon-Blum said. "Shy children function. Children with selective mutism have a difficulty socially, emotionally, academically."
Anxiety Mistaken for Defiance
This widely misdiagnosed disorder is often ignored or dismissed as just a phase, leaving kids to suffer in silence. The Galies, who were previously unaware that Morgan suffered from selective mutism, initially saw their daughter's behavior at school as defiance. According to a recent study, selective mutism is almost twice as common as autism.
"It's very frustrating, because how she is at home and then to hear that she's not talking in school," Colleen Galie said. "I thought she was doing it on purpose."
"You feel really bad for yelling at her for not talking, to find that she can't talk."
Although children with this disorder don't speak in public because they are paralyzed with fear, you won't observe them looking panic-stricken. That's because they are coping with the fear by not speaking.
Morgan's mutism makes every class a challenge. In art class, she sometimes responds, but can't ask questions or make her needs known. In reading, she uses occasional gestures to communicate.
"The primary thing that you're working on in first grade and second grade is reading," said Morgan's teacher, Ann Dieter. "And it's difficult to assess where she is in reading, if she's not reading for me."
Treating Selective Mutism
For the last three months, Shipon-Blum has been treating Morgan. The first goal of the treatment is not to get her to talk, but to help Morgan combat her anxiety and begin to engage socially in nonverbal ways. That's because the true problem is anxiety -- not the mutism itself, which is just a manifestation of that anxiety.
Now, when she is out with her mother at a store, Morgan can hand money to the cashier. That's something she could not have accomplished before she began her treatment. But, when her mother pressured her to wave goodbye to the cashier, Morgan shut down.
The treatment aims to reduce Morgan's anxiety, boosting her self-esteem and confidence. The next step is to teach her some nonverbal ways of making her needs known and communicating. Then, hopefully the words will follow. It's a long, slow process.
"It is slow," Vincent Galie said. "It's small steps, a lot of small steps, to equal one big step."
Morgan's painstakingly slow progress hasn't dashed her parents' hopes, though.
"I say maybe by the end of this year you'll be talking, and she just smiles. So, I can see a difference in her like that," Colleen Galie said. "I feel like she wants to start talking."