Communicative rate, form, and function in CHARGE syndrome

CHARGE syndrome is a rare and complex disorder that often involves significant expressive communication delays caused by a combination of sensory, cognitive, and physical impairments. For educational purposes, CHARGE is considered to be a deaf-blind syndrome. Little is known about the characteristics of communication in CHARGE syndrome because the assessment of speech and language in this population requires special observational skills and because standard tests and evaluation procedures are typically not appropriate. The purpose of this study was to describe the communication skills of individuals with CHARGE syndrome and to analyze their communication in terms of communicative rate, form, and function. The participants in this study were 21 individuals with CHARGE syndrome who ranged in age from 1:8 to 20:5 and whose communicative abilities ranged from early pre-symbolic communication to conversational language.Analyses of intentional expressive communication were made using 15-minute video-taped communication samples of each participant interacting with a deaf-blind specialist. The rate of intentional communication for each participant was calculated. The communicative form and function of each intentional act was specified on a two-dimensional coding schema for communicative form and function. Expressive communication was specified in terms of (1) communicative forms divided into two groups (pre-symbolic or symbolic) with 22 component forms and (2) communicative functions divided into three groups (behavioral regulation, social interaction, and conversational acts) with 20 component functions. As with studies on other aspects of the disorders that present in CHARGE, the primary value of these analyses was to show the range of abilities that were present and how the schema could be used to differentiate the communicative acts of individuals.In the present study, intentional communication ranged from the lowest level, in which communicative forms were pre-symbolic and functions were behavioral regulation, to the highest level, in which communicative forms were symbolic and functions were conversational acts. The results provide preliminary evidence that the development of intentional communication in CHARGE syndrome is related to the following factors: development in the use of forms and functions, communicative rate, chronological age, and the ability to walk independently.