Communication Skills in Girls With Rett Syndrome

Abstract

Rett Syndrome (RS) is an X-linked, neurodevelopmental disorder that occurs primarily in females and causes significant impairment in cognition, motor control, and communication. Teachers and speech-language pathologists (SLPs) encounter girls with RS with increasing frequency as awareness of the disorder increases, yet the literature on clinical interventions with this population is limited. Parents, teachers, and SLPs were surveyed regarding the communication abilities of these girls. Respondents reported that girls with RS use multiple modalities to communicate, with eye gaze the most frequently used modality, followed by picture/symbol systems and body movements. This study provides clinical information for professionals working with girls with RS, and supports the need for additional research on strategies to improve communication in RS.

Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

“…Further, clinical reports suggest a higher linguistic and communicative level than formerly believed no children or adults with Rett syndrome were reported to use communication aids as a means for communication [57], whereas in another survey study, one-third of Swedish parents reported that their children used some sort of communication aid [58]. An even higher rate of communication aids was reported in an international survey from 2010 [24]. Picture or symbol communication boards were used to communicate by 61% of girls with Rett syndrome and over 40% reported unspecified devices.…”

“…However, it would be of interest for further research in that an increasing number of studies involve people with Rett syndrome from several countries [24].…”

Interlocutors and Interactions: Examining the Interactions Between Students With Complex Communication Needs, Teachers, and Eye-Gaze Technology

“…Eye gaze was reported as the most commonly used modality for expressive communication for individuals with RS (Bartolotta et al, 2011;Urbanowicz et al, 2014), which raises the opportunity to explore eye-tracking technology as a means to enable communication and improve communicative capabilities for individuals with RS. In a study of nonverbal cues, eye gaze was identified as a key feature in following conversational sources including in mediated exchanges (Vertegaal, 1999) and in an analysis of conversational attention in multiparty conversations, eye gaze was found to be an excellent predictor of conversational attention (Vertegaal et al, 2001).…”

“…In a survey distributed to 141 parents, teachers, and health care professionals, the majority of respondents believed that people familiar to individuals with communication disabilities can better interpret their communication than unfamiliar people (Bartolotta et al, 2011). While familiarity offers more comfort in a social environment, in special education where there is greater likelihood that a nonverbal student's needs require some assistance and interpretation, there is a risk for the student to lose degrees of agency and self-determination.…”

Development of a tool to assess visual attention in Rett syndrome: a pilot study

“…One common feature is severe communication difficulties. In particular, expressive communication is severely affected, and approximately 80% of individuals diagnosed with Rett syndrome lack speech (Bartolotta, Zipp, Simpkins, & Glazewski, 2011;Didden et al, 2010;Urbanowicz, Downs, Girdler, Ciccone, & Leonard, 2015). Even so, a number of studies have found that people with Rett syndrome enjoy social interaction (Fabio, Giannatiempo, Oliva, & Murdaca, 2011;Sandberg, Ehlers, Hagberg, & Gillberg, 2000;Urbanowicz, Downs, Girdler, Ciccone, & Leonard, 2016), and that the most efficient form of communication is eye pointing (Bartolotta et al, 2011;Didden et al, 2010).…”