Measure the communication ability of people with intellectual and developmental disabilities who have no or limited speech

Nancy Brady led the team that produced a beta version of the Communications Complexity Scale (CCS) in 2012. The CCS is a unique measure for researchers and clinicians to assess the communication status of children and adults with disabilities as diverse as autism spectrum disorders, Down syndrome, deaf-blindness and cerebral palsy, including those who are nonverbal or have very limited speech.

This year Brady received support from NIH to take the promising measure to the next level over five years. She will be collaborating with LSI assistant scientist Kandace Fleming, LSI assistant research professor Kathy Thiemann-Bourque and Connie Kasari, professor of psychological studies in education of the UCLA Center for Autism Research and Training to hone the validity of the CCS.

“With current measures, an intervention could make a big difference in an individual’s social communication, but that would never show up in the data if an individual wasn’t talking yet, said Brady. “The CCS may be able to show progress much earlier.”

The CCS is based on well-established “presymbolic” stages of communication development in typically developing children from birth, beginning with an infant crying or smiling, followed by eye gaze, gesturing and vocalizing directed at another person, to using “symbolic” communication, typically, spoken words.

Brady says that clinicians and family members sometimes give up on people who are nonverbal making any progress after early childhood. “But it is not unusual for someone to start doing new things as an adult when they have a need to communicate.”

The CCS may also be able to measure degeneration in communication as in the case of individuals with Down syndrome who start aging early.

“The CCS will help clinicians describe an individual’s current communication status, much like the Rancho Los Amigos Scale does for people with traumatic brain injury,” Brady said. “Then, appropriate therapies can be selected based on that level.”