Having friends and Rett syndrome: how social relationships create meaningful contexts for limited skills

Abstract

Purpose : The experiences of a teenage girl with Rett syndrome who was being educated in an inclusive middle school are described to provide a better understanding of how social relationships create meaningful contexts for individuals with limited skills. The case example is used to illustrate the principle that contexts (including expectancies, acceptance, philosophical principles) can be designed to support meaningful social relationships, despite social and intellectual disabilities. Method : Naturalistic observations of social interactions over a two year period are reported to illustrate the possible types of social relationship between this young person and her adolescent friends and peers. Results / Conclusions : While someone with this syndrome might be judged objectively to have minimal social skills, an accepting social environment willing to read minimal communicative cues provided the context for many typical social interactions. Since contexts require subjective judgement, the post-modern concept that disability represents a social construction can be viewed as a metaphor compatible with the reality that careful planning and structuring of the environment is in some instances the most appropriate intervention focus rather than the person with a disability. The sorts of positive friendship experiences described in this paper did not occur spontaneously, or by chance alone, nor were they the result of social skills instruction. Instead, they were associated with observable social behaviour by caregivers and peers who were extending their own repertoires to accommodate someone objectively determined to have a severe disability.