By Nicole McLaughlin
Times Staff Writer

Anxiety disorders have always fascinated Dr. Elisa B. Shipon-Blum. They fascinated her so much that after she graduated from the Philadelphia College of Osteopathic Medicine, she decided to specialize in that area.
In the late 1990s, when a friend was diagnosed with an anxiety disorder called selective mutism, she knew she had found her calling.
“Someone very close to me had selective mutism and I was trying to help her,” she explained. “I was flabbergasted with how little the psychological and medical community knew about this disorder.”
Determined to find out more about the condition, which causes an inability to speak, primarily in social settings, she decided to devote her career to researching and treating the anxiety disorder.
“Basically, I’ve given up my medical practice to devote my life to helping selectively mute children, to help them get the words out,” she said.
On July 13, she hosted the first Selective Mutism Group-Childhood Anxiety Network (SMG-CAN) retreat. More than 200 people from as far as Canada, Colorado and Arizona came to the Philadelphia area to participate in the event.
Shipon-Blum, who lives in Meadowbrook, Montgomery County, is the executive director and medical director of SMG-CAN, a primarily on-line support group that is devoted to selective mutism and related childhood anxiety disorders.
According to Shipon-Blum, it is the most comprehensive organization of its kind. Within the last year, the network’s Web site, www.selectivemutism.org, has received more than 3.6 million visits.
As the voice behind the site’s “Ask the Doctor” link, she answers questions on selective mutism from parents and health-care professionals around the world.
According to the Web site, selective mutism is characterized by consistent failure to speak in social settings where a person is expected to speak. In most cases, children do speak in settings where they feel comfortable, such as at home and with family members. However, they are unable to speak in settings outside the home, such as school or at the playground — hence the term “selective mutism.”
For that reason, children with the disorder are often misdiagnosed. Teachers and professionals often attribute their behavior to anything from being shy to having a learning disorder.
Because those with selective mutism often “freeze in social situations,” they are sometimes diagnosed as autistic, Shipon-Blum said.
“It’s very important that people realize that these children cannot speak. They don’t choose not to or refuse to, they can’t,” she stressed. “They just can’t do it and that’s why they’re misunderstood.”
Children with the disorder are typically diagnosed soon after they start school, as in Jackie Weinberger’s case.
The Weinbergers traveled from Oakdale, N.Y., to attend last weekend’s retreat. Jackie, who was a talkative toddler at home, would not speak in school, which came as a surprise to her parents.
“I couldn’t believe she wouldn’t talk to her teacher, who to me seemed like a warm, outgoing, loving woman,” the youngster’s mother, Marie, remembered. “She wasn’t mean or anything, and my daughter just wanted nothing to do with her.”
Jackie would participate in activities, but she did not interact with the other students. The Weinbergers originally attributed it to being shy.
However, after a few months with no sign of improvement, they took her to a psychiatrist.
Jackie, who is 6, was diagnosed with selective mutism in the winter of 2000. Behavioral therapy is commonly used for children with the condition. Weinberger attends the sessions with Jackie, where she works on being comfortable with her feelings, understanding how to react in social situations and learning to express how she feels.
Marie Weinberger said SMG-CAN has been a great source of support.
“This group seems to be very caring and kind and willing to help,” she said.
The youngster is slowly making progress. Last year, if she was asked a question, she wouldn’t respond. She will now nod her head “yes” or ”no,” which is a big step for the little girl.
“It’s a little improvement, but to me, it’s everything in the world,” her mom said.
The Weinbergers were just one of many families that attended the event, which was held at Willow Grove Picnics. The all-day picnic featured workshops and a variety of activities, including swimming, pony rides, paddle boats and plenty of food.
Emily Mallon was enjoying some of the food. Despite nursing a broken leg, she seemed to be having a good time.
The 13-year-old Downington resident was diagnosed with selective mutism when she was a kindergarten student.
The Mallons noticed their daughter’s unwillingness to speak when she was about 3.
Emily would talk to her parents, her brother and a few relatives. But once she was in school, she’d freeze up.
“Her preschool teacher thought she was being controlling and stubborn, and that made us really angry,” her mom, Gina, recalled. “There was a real lack of education as to what this disorder was.”
Eventually, Gina Mallon came upon the SMG-CAN site and found out about Dr. Shipon-Blum. For the past year, Emily has been seeing her.
The youngster works on understanding what makes her feel nervous, why she feels that way, and how to react to those feelings.
Although she still isn’t comfortable speaking to teachers, Emily is making progress. She answers the telephone and will order a meal at McDonald’s.
“When she went into seventh grade, she was only talking to about five people. Now she’s increased that to about eight or nine, so we’re very excited about that,” Mallon said.
And even though she wouldn’t say it, Emily’s smile indicated that she’s happy about it, too.

For more information about the Selective Mutism Group-Childhood Anxiety Network, visit www.selectivemutism.org