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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.