Sunday, Jan. 29, 2006   WITHIN FEB, 06 TIME Magazine.
Why Abby Won't Talk
She has a condition called selective mutism that is neither as rare nor as hopeless as experts believed. But the right help is hard to find
By WENDY COLE / PHILADELPHIA

Abby Barnes' hand shoots up nearly every time her teacher asks the 19 squirmy first-graders in her suburban Philadelphia public school to match letters of the alphabet to the sounds they make. Sitting up front with her pinchable cheeks framed by long blond hair, Abby, 7, looks as eager as any of her classmates to blurt out an answer. But every time the teacher calls on her, Abby freezes. Her face tightens. She strains to respond. And even if an answer manages to get past her lips, her words are inaudible. She's effectively mute throughout the school day--even at recess, where the closest she will come to open communication is words whispered to a trusted girlfriend.

At home, however, Abby is a different child. She loves to play cards and board games and frolic with her brother Jack, 5. "She speaks loudly--sometimes too loudly--and can be bossy toward her brother," says mother Lisa Barnes, who runs the trading desk at a money-management firm. Abby is, in every other way, a perfectly normal child who has no shortage of extracurricular activities, including horseback-riding lessons and dance classes that she's been attending since she was 4. "Performing in public is fine," says her mother. "She likes people to look at her and applaud."

So why doesn't she speak up in class? What may at first glance look like shyness or obstinacy is actually something far more complex--and much more interesting. Abby, like hundreds of thousands of kids across the U.S., is suffering from a little understood but increasingly recognized childhood disorder called selective mutism.

The key to selective mutism, or SM for short, is the seemingly incongruous behavior Abby exhibits: voluble in private, silent in public. According to the official psychiatric diagnostic manual DSM-IV, a child who has developed normally at home but has not talked at school or in other social situations for at least a month is a strong candidate for a diagnosis of SM. Experts once believed that fewer than 1 in 1,000 kids developed the disorder, but an influential study three years ago in the Journal of the American Academy of Child and Adolescent Psychiatry put the prevalence at closer to 7 in 1,000, making SM almost twice as common as autism.

SM can strike at any age, even among children who once talked in public, but it usually becomes obvious by age 3 or 4, when peers are happily jabbering away. About 30% of kids with SM also have a developmental speech impairment, which can exacerbate the problem but is generally not the cause. In the past doctors often recommended speech therapy, but treating the physical or neurological issues alone will probably have little impact on the underlying psychological factors behind SM.

The root of the problem in most cases is an extreme form of social anxiety or phobia. "It is a fear that can literally make it impossible to speak," says Dr. Elisa Shipon- Blum, a Philadelphia-based clinician who specializes in treating selective mutism. As with most social anxieties, SM is more common in girls and is believed to have a strong genetic component. About 70% of kids with SM have an immediate family member who also struggles with social anxiety.

Compared with childhood disorders in which children are disruptive and disorderly-- such as attention-deficit/hyperactivity disorder (ADHD)--selective mutism gets less attention and considerably fewer research dollars. "These children are ignored because, let's face it, they aren't causing anyone trouble. They are literally left alone and forgotten about," says psychologist Lindsey Bergman, associate director of the UCLA child and adolescent OCD [obsessive-compulsive disorder] and anxiety disorders program.

But that's changing, thanks largely to specialists such as Bergman and Shipon-Blum. Trained as an osteopathic family physician, Shipon-Blum had a pressing personal interest in the condition. Finding almost no good research on the subject, she had to resort to trial and error in order to help her daughter Sophie, now 11, overcome a paralyzing mutism. Today Shipon-Blum runs an SM clinic with a two-year waiting list and travels the U.S. speaking in hotel ballrooms packed with concerned parents, teachers and clinicians. She also founded the nonprofit Selective Mutism Group--Childhood Anxiety Network, which has become the major national advocacy group for SM. The group's website, www.selectivemutism.org gets 450,000 hits a month, and its call center hears from several hundred people a week seeking treatment or information.

Shipon-Blum's treatment approach involves a range of cognitive-behavioral techniques aimed, at least at first, at increasing nonverbal interaction. In her office in Jenkintown, Pa., wedged into a strip mall along with a Dunkin' Donuts and a beauty salon, Shipon-Blum has taped colorful Popsicle sticks together into a pointer, and kids use it to respond to questions by indicating either a YES card or a NO card. The amount of homework Shipon- Blum assigns surprises many parents. When shopping with their parents, for example, kids are encouraged to hand the money to merchants. And in restaurants, children are supposed to give their order to the waiter by pointing out what they want on the menu, rather than have parents do the talking for them.

Young children with SM may be expected to have a playdate with the same peer every week, whether or not the child speaks to the friend. "We have to build them up inside before we even talk about talking. I need to give them back control within themselves," says Shipon-Blum.

The treatment is a marked departure from what until quite recently was standard practice in the field. Many doctors either offered parents hopeless-sounding diagnoses, such as autism or mental retardation, or dismissed their concerns as neurotic, telling them that their children would simply grow out of it. That message infuriates specialists like Shipon-Blum, who agrees that children with untreated SM may eventually manage to communicate in social situations but insists that without addressing the precipitating factors behind the mutism, debilitating anxieties are likely to persist into adulthood. "They may develop methods of coping, but are they happy and functioning?" she asks.

It was a subtle semantic change in the official diagnosis of this form of mutism that helped change doctors' perceptions, says Dr. Bruce Black, a psychiatrist in Wellesley, Mass., who conducted some of the first empirical studies on SM in the early 1990s. Until about 15 years ago, children were routinely considered to have "elective mutism," which suggests the silence is willful and controlling. "It was seen as a power struggle that manifested as a refusal to speak," says Black. "Now it is characterized as a failure to speak."

Another popular misconception was that students with SM suffered from emotional or physical abuse and that their silence stemmed from an effort to keep the trauma secret. "That was presented as fact until the late 1980s," says Black, "even though there was no proof." There is still a dearth of scientific literature in the field, he says, in part because the people in the best position to offer insights into the disorder's crippling effects--the affected kids--have so much difficulty communicating.

Abby Barnes joined Shipon-Blum's waiting list last fall, and her parents are buoyed by the hope that they have finally located someone who understands their perplexing daughter--even if they have to wait another year or more for help. "Her preschool teachers ignored the situation and just thought she was timid," recalls Lisa. When Abby was 3, a well-meaning speech therapist taught her sign language, but her fear of speaking in public didn't go away. Friends tried to make Lisa feel better, telling her that Einstein didn't talk until he was 7, but she still felt helpless and so guilt-ridden she was ready to believe almost anything. Says Lisa: "Abby was an in vitro baby, and I wondered if that had something to do with it."

But Lisa feels even worse about the emotional agony her daughter must go through every day. "When someone outside her immediate family compliments her on her pretty dress, she looks at the ground and clenches her fists," says Lisa. And because Abby couldn't tell her teachers that she had to go to the bathroom, she used to be very worried about having accidents at school.

But in Kim Russell, her first-grade teacher, the child has found a sympathetic ally. The teacher periodically sends small groups of children to the bathroom together, alleviating Abby's stress about asking for breaks. And rather than lose patience with Abby for the false starts, she praises her for trying. Indeed, the most striking thing about the well-managed classroom is what this perpetually smiling teacher doesn't do: she doesn't command Abby to speak up, nor does she stop calling on her.

It's an approach that seems to be paying off. When a photographer from TIME showed up to take her picture in class recently, Abby not only worked out the answer to an arithmetic question but also accomplished something she has just started to do: she shared it out loud, in her own quiet but unwavering voice.