Take away your voice, and everything becomes harder. With no way to communicate, it’s challenging to get an education, perform a job, or build the personal relationships that enrich our lives.
This is the reality for millions of people with conditions that make speech difficult or nearly impossible, taking away many of the things that help make life meaningful.
That’s why Janice Light, the Hintz Family Endowed Chair in Children’s Communicative Competence, has spent more than thirty years building a program at Penn State that helps people with conditions like autism spectrum disorder, cerebral palsy, and Down syndrome learn to communicate despite troubles with speech.
Janice Light, Distinguished Professor, Hintz Family Endowed Chair in Children’s Communicative Competence
College of Health and Human Development
Department of Communication Sciences and Disorders
“Communication is the essence of human life. Yet 4 million people in the U.S. and 97 million worldwide live with these complex communication needs and don’t have a voice.”
The Penn State program works with people of all ages to help them learn communication skills and strategies, in a field known as augmentative and alternative communication, or AAC. These strategies can include sign language, communication books with pictures or photos they can point to, and assistive technologies.
Light and her colleagues built the program from the ground up at Penn State. Every part of the program is supported by their research, from understanding motor and cognitive processes to developing new technologies and interventions.
“We also do implementation science, which is looking at whether these interventions and technologies not only work here in the lab or in our clinic, but also out in the real world,” Light said. “We want to make sure our research gets translated into practice so that any individual, not just those getting help here, have access to these high-quality interventions and services.”
These services and interventions have proven meaningful for many families, including Dianne Mayberry, whose daughter has been part of the program for seven years.
“Ann’s speech has improved tremendously. She’s developed an awareness of her communication and the perseverance to slow down while she’s talking with others,” said Mayberry. “The improved speech is definitely very meaningful, but so are all of the connections we’ve made with Janice and her team. Everyone at the clinic has always shown us kindness and compassion.”
“I was very aware of how much was going on in these kids’ heads that couldn’t work its way out. I knew there had to be a way to open the doors of communication.”
A Spark is Born
Light’s interest in AAC was born when, as a schoolteacher in the eighties, she was assigned to teach a class of students who were connected by one common thread: they couldn’t speak. There were a set of twins with autism spectrum disorder, kids with Down syndrome and hearing impairments, and a child who had suffered from abuse, as well as children with various other communication challenges.
“At the time, AAC was such a new field that while we weren’t sure about how exactly to teach these children, I was very aware of how much was going on in these kids’ heads that couldn’t work its way out,” Light said. “I knew there had to be a way to open the doors of communication.”
Light got to work. She taught some of the children to use sign language, and others to use pictures and photos to communicate. As technologies started to be developed, Light incorporated those, as well.
But even though she loved her job working with children and their families, Light found herself asking new questions that hadn’t been answered yet.
“We want to make sure our research gets translated into practice so that any individual, not just those getting help here, have access to these high-quality interventions and services.”
A Grassroots Effort
Light went back to school to finish her doctorate and eventually moved to Penn State, where there was a want and need for AAC teaching and research.
“When I came to the Communication Sciences and Disorders department, there was no coursework, research, or clinical services in AAC yet,” Light said. “But there was a lot of belief and support in the vision, and we were able to build a great program with wonderful faculty who have gone from very little resources to what’s now a large research program, a model demonstration program in our clinic, and a lot of doctoral and masters students.”
Light said one of their biggest successes has been their work with children, some as young as six or seven months old. Light and her colleagues help them learn to use assistive technologies and how to read and write, all with the hope of giving them a leg up when they start school.
“Our society still sometimes looks at children with disabilities and believes that because they can’t talk, they also can’t learn,” Light said. “But when kids enter school and can already read and write, that shows they can learn, and then the whole education experience is different.”
Moving forward, Light is helping to train the next generation of researchers, teachers, and practitioners.
“This is one of the main reasons I came to Penn State,” Light said. “I wanted to make sure that we have a next generation of AAC experts, so we can continue to do research that can be translated into practice so that if you’re an individual with complex communication needs, it’s not the exception but the rule that you will get the services that you require.”
Together, Light and the next generation will continue to work to make sure everyone—regardless of circumstance—has a voice and a way to be heard, now and into the future.
Janice Light and her colleagues received a five-year, $4.6 million award from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to fund the Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC on AAC), a national collaboration of researchers and engineers who conceptualize, research, develop, and train people to use new technologies to support communication (Penn State News, September 24, 2020).
A group of Penn State researchers have received a $1.25 million grant (Penn State News, September 11, 2017) from the U.S. Department of Education to address a shortage of faculty who can conduct research and train speech-language pathologists to provide interventions to improve outcomes for the more than four million Americans who have such complex disabilities that they cannot meet their communication needs through their own speech.