Unlocking Emily’s World
Cracking the code of silence in children with autism who barely speak
Emily Browne is laughing, and nobody really knows why. The 14-year-old with a broad face and a mop of curly brown hair has autism. She drifts through her backyard in Boston’s Dorchester neighborhood, either staring into the distance or eyeballing a visitor chatting with her dad, Brendan, and her 15-year-old sister, Jennifer, on the nearby patio. That’s where the laughter started—a conversational chuckle from somebody on the patio that Emily answered with a rollicking, high-pitched guffaw. Then another, and another, and another.
Emily can’t join the conversation. She is among the 30 percent of children with autism who never learn to speak more than a few words—those considered “nonverbal” or “minimally verbal.” Emily was diagnosed with autism at two, but Brendan and his wife, Jeannie, knew something was wrong well before then.
But why? What is it about the brains of “minimally verbal” kids like Emily that short circuits the connections between them and everyone else? And can it be overcome? That’s the research mission of Boston University’s new Center for Autism Research Excellence, where Emily is a study subject.
Partly because of the expanding parameters of what is considered autism, the number of American children diagnosed with autism spectrum disorder has shot up in recent years, from one in 155 children in 1992 to one in 68 in 2014, according to the Centers for Disease Control and Prevention. And Helen Tager-Flusberg, a BU College of Arts & Sciences professor of psychology who has studied language acquisition and autism for three decades and heads the Autism Center, says minimally verbal children are among the most “seriously understudied” of that growing population.
Backed by a five-year, $10 million grant from the National Institutes of Health awarded in late 2012, her team includes researchers and clinicians from Massachusetts General Hospital, Harvard Medical School, Beth Israel Deaconess Medical Center, Northeastern University, and Albert Einstein College of Medicine in New York City. The researchers are focusing on the areas of the brain used for understanding speech, the motor areas activated to produce speech, and the connections between the two. They’ll combine functional magnetic resonance imaging (fMRI), electroencephalography (EEG), and neural models of how brains understand and make speech. The models were developed at BU by Barbara Shinn-Cunningham, a professor of biomedical engineering in the College of Engineering, and Frank Guenther, a professor of speech, language, and hearing sciences at BU’s Sargent College of Health & Rehabilitation Sciences. They’ll also run the first clinical trials of a novel therapy using music and drumming to help minimally verbal children acquire spoken language.
Ultimately, Tager-Flusberg and her colleagues hope to crack the code of silence in the brains of minimally verbal children and give them back their own voices. Getting these kids to utter complete sentences and fully participate in conversation is years away. For now, the goal is to teach words and phrases in a way that can rewire the brain for speech and allow more traditional speech therapy to take hold.
“Imagine if you were stuck in a place where you could not express anything and people were not understanding you,” says Tager-Flusberg, who is also a professor of anatomy and neurobiology and of pediatrics on Boston University’s Medical Campus. “Can you imagine how distressing and frustrating that would be?”