Previous research on the expressive communication abilities of people with Rett syndrome (a rare, neurodevelopmental disorder occurring 1 in 10,000 female births; Neul et al., 2014) has mostly utilized experimental and quasi-experimental approaches. These reports reveal that people with Rett syndrome intentionally communicate, often using their eyes (Bartolotta et al., 2011) and with other forms of unconventional communication (e.g., body movements, facial expressions, vocalizations, gestures; Didden et al., 2010). Although at least some people with Rett syndrome are reported to use conventional symbolic communication using various forms of augmentative and alternative communication (Grether, 2018; Urbanowicz et al., 2018; Vessoyan et al., 2018).
The literacy abilities of children with Rett syndrome are mostly unknown, with some reports of children reading at the single word level (Bartolotta et al., 2011) and other reports of children identifying letters and segmenting words into syllables (Fabio et al., 2013). However, parents report that their children with Rett syndrome have greater abilities than are recognized by others (Bartolotta et al., 2011; Urbanowicz et al., 2016), and professionals who work with this population report that the potential for children with Rett syndrome to communicate is largely underestimated (Townend et al., 2020). To understand the inconsistency between the published reports of the abilities of people with Rett syndrome and real-time observations, I designed a qualitative study to interview three young people with Rett syndrome on their self-perceptions and experiences with communication, reading, and writing.
Guided by the United Nations Convention on the Rights of the Child (1989) and the Convention on the Rights of Persons with Disabilities (United Nations, 2007), there is a growing expectation that research about children with disabilities offers them the right to express their views. No known research on the communication and literacy abilities of people with Rett syndrome has sought to directly gain their perspectives or self-reports. Therefore, this study investigated the preferences of people with Rett syndrome around modes of expressive communication, reading, and writing activities using a multiple case study.
Results of Talking Mats interviews, direct observations of the participations, field notes, and detailed case histories revealed that the participants have clear preferences and self-perceptions about expressive communication and literacy. Convergent themes across the three participants included adaptable multimodal communication, incongruent views of communication and literacy abilities, and resilience. Specifically, the three participants demonstrated strategic use of both systematic and idiosyncratic communication (Doak, 2023) which has not previously been explored in this population. Lastly, across the cases, all participants responded in ways that suggest that although they are skillful symbolic communicators who use high-tech augmentative and alternative communication systems, they may prefer that communication partners attend to their embodied communication attempts.
Within the three cases, themes reflecting unique communication abilities were revealed. This work has implications for clinical decisions for speech-language pathologists and educators who provide language and literacy interventions for people with RTT. This session will describe a novel approach to understanding the expressive communication and literacy abilities of young people with Rett syndrome. Participants will learn how a Talking Mats (Murphy & Cameron, 2008) approach was used to adapt traditional interview procedures. Detailed descriptions of findings across and within participants will be presented to fully appreciate the heterogeneity of abilities represented in Rett syndrome. Results of the interviews, including salient video clips, will be presented along with clinical implications of the findings.
