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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, 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.