Communication abilities and Rett syndrome.
Eye gaze is the main way girls with Rett syndrome talk, and challenging behavior is often their back-up voice.
01Research in Context
What this study did
G et al. watched 120 girls with Rett syndrome at home, school, or the clinic.
They wrote down every pre-linguistic act: eye gaze, sounds, body moves, and challenging behavior.
The goal was to see which acts the girls used to ask, refuse, greet, or call for help.
What they found
Eye contact and looking were the top tools—every girl used them.
Between 10 and 41 percent also used hitting, biting, or screaming to send a message.
No girl used words, signs, or pictures; all signals stayed at the pre-linguistic level.
How this fits with other research
Repp et al. (1992) tracked one child and saw the same eye-gaze lead after skills returned—this big list backs up that small story.
Wilkinson et al. (1998) later found 30 girls who kept some words, showing the classic picture in G et al. is not the only path.
Taylor et al. (1993) showed that hits or bites can work to escape tasks—G et al. now tells us such acts are common communicative tools, not just biology.
Why it matters
If you serve a girl with Rett, treat eye gaze as her first voice.
When you see self-hits, test if they serve a talk function before you call them purely medical.
Start intervention by shaping looks, sounds, and calm body moves into clearer signals instead of waiting for speech that may never come.
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02At a glance
03Original abstract
In the present study we assessed the forms and functions of prelinguistic communicative behaviors for 120 children and adults with Rett syndrome using the Inventory of Potential Communicative Acts (IPCA) (Sigafoos et al. Communication Disorders Quarterly 21:77-86, 2000a). Informants completed the IPCA and the results were analysed to provide a systematic inventory and objective description of the communicative forms and functions present in each individual's repertoire. Results show that respondents reported a wide variety of communicative forms and functions. By far most girls used prelinguistic communicative behaviors of which eye contact/gazing was the most common form. The most often endorsed communicative functions were social convention, commenting, answering, requesting and choice-making. Problematic topographies (e.g., self-injury, screaming, non-compliance) were being used for communicative purposes in 10 to 41% of the sample. Exploratory analyses revealed that several communicative forms and functions were related to living environment, presence/absence of epilepsy, and age. That is, higher percentages of girls who showed some forms/functions were found in those who lived at home, who had no epilepsy and who were relatively young.
Journal of autism and developmental disorders, 1992 · doi:10.1007/BF01058148