Communication is the key
"Your son is an excellent communicator."
Marie Duggan had never heard those words until 1994 when she took her 4-year-old autistic son, Michael, to visit Howard Shane, PhD, director of Children's Hospital Boston's Communication Enhancement Center (CEC). Doctors told Marie and her husband that their son would never speak, and he would eventually have to be institutionalized, but the Duggans refused to send Michael away, hoping the CEC could help him communicate.
As Marie brought Michael to his first CEC visit, he was hysterical, kicking and screaming as she held him. Used to playing guessing games with their son, the Duggans tried to figure out what he wanted, as Dr. Shane quietly observed. "Right away, I knew he had the goods [to communicate],"
Dr. Shane says. "We just needed to provide him with the tools."
As a pediatric speech-language pathologist, Dr. Shane is very familiar with the situation the family experienced. Since 1977 he has worked at Children's with children who have communication problems. He solved their issues "a la carte" up until 1985, when the hospital developed the CEC at his urging. "More children were remaining at home, who normally would've been institutionalized," he says. "Technology was evolving, and I was interested in finding better solutions for children who couldn't communicate."
The CEC is now internationally renowned for providing comprehensive, state-of-the-art evaluation and treatment. They care for children and adults with congenital or acquired disorders like autism, cerebral palsy, traumatic brain disorders, as well as others that affect hearing, voice and speech. The staff includes speech-language pathologists, occupational therapists and computer specialists with expertise in augmentive communication. They determine communication options for patients with speech impairment and suggest the most appropriate educational technology solutions.
Clinicians at the CEC strive for each patient to be able to organize, understand and express themselves. They go through a systematic process of "feature matching," where each patient is evaluated to determine their language, thinking processes, motor skills and hearing. The specialist then determines which assistive technology will most improve the patient's ability to communicate.
Additionally, CEC clinicians are always searching for new ways to improve communication for their patients. The CEC's innovations include touch-screen activated communication devices, software programs and the use of voice recognition to help patients understand visual language.
Dr. Shane determined that a touch-activated communication device was an ideal assistive technology for Michael. The CEC taught all eight members of the Duggan family to use the device, and Michael's five brothers and sisters have recorded their voices into the system, which he loves.
After years of working with the device, trying other strategies and visiting the CEC, Michael began to speak in 2002. Marie credits Dr. Shane and the rest of the CEC team for her son's progress, and is grateful for all of their help. "Dr. Shane was the only person who always gave me hope," she says. "If it weren't for him, Michael wouldn't be speaking."
"Autism is such an isolating disease," she adds. "It's great to be treated so wonderfully, especially when you are used to being stared at in public. I always look forward to going to the CEC. I feel like everyone there ‘gets it'."
According to Dr. Shane, "Children who are the most successful receive strong support from their families and schools. While [the CEC] can't be all things to all people, we do research, develop assistive technologies and work with other professionals to help our patients communicate to their best ability."
While Michael still needs work with his articulation, he is speaking, which other doctors deemed impossible. "My other sons and daughters get so excited when Michael calls them by name," says Marie. Recently, Michael told his mother, "I love you. I need a hug." She immediately emailed Dr. Shane to tell him what happened. "Thanks to Dr. Shane and the CEC, I'm never giving up on this kid."