The pearl in the middle: A case study of social interactions in an individual with a severe intellectual disability HILARY JOHNSON 1 , JACINTA DOUGLAS 2 , CHRISTINE BIGBY 3 & TERESA IACONO 4 1 Communication Resource Centre, Scope, and La Trobe University, Victoria, Australia, 2 Human Communication Sciences, La Trobe University, Victoria, Australia, 3 School of Social Work, La Trobe University, Victoria, Australia, and 4 La Trobe Rural Health School, La Trobe University, Victoria, Australia Abstract Background People with severe intellectual disability have limited communication skills, small social networks, and may experience isolation. Little is known about how interactions occur with social network members and the role of social support. Method An adult with a severe intellectual disability was observed in her daily environments. Her social network members were identified and interviewed. Data were analysed using a grounded theory approach. Results Fourteen social network members were identified. People with severe intellectual disability interact in different ways, which may not be understood by network members or conform to normative expectations. Still, network members experienced enjoyment, personal satisfaction, and love in their interactions. Conclusions Social interactions with people with severe intellectual disability are challenging. The results point to the benefits of a focus on learning that makes interactions meaningful for each individual, sharing that information with network members, and considering ways to increase interactions and extend the social network. Keywords: severe intellectual disability, communication, social networks, adult, interaction Introduction Social inclusion is an important aspect of Australian government policy (Australian Government, 2009). Various pieces of legislation and policies have been enacted to encourage the inclusion of marginalised groups, particularly those with intellectual disability, but with limited success (Department of Health, 2001; Department of Human Services, 2002; Lecompt & Mercier, 2007). For example, in a recent national report, over half of 750 submissions received from people with disability and disability organisa- tions stated that social inclusion and community participation were still unrealised goals (National People with Disabilities and Carer Council, 2009). Facilitating the social inclusion of people with severe intellectual disability presents complex issues. As Finlay, Antaki, Walton, and Stribling (2008) sug- gested, inclusion is not only about presence but also about ‘‘respectful, mutual exchanges between in- dividuals, which are rewarding for both parties’’ (p. 532). Such exchanges or interactions are often underpinned by successful communication. Success- ful interactions may be difficult to achieve when one or more of the communication partners have limited communication abilities associated with physical and/or intellectual disabilities (Johnson, Douglas, Bigby, & Iacono, 2009). People with intellectual disability have been esti- mated to comprise 3% of the population (Wen, 1997) and many experience difficulties with communica- tion (Australian Institute of Health and Welfare, 2003). The more severe the intellectual disability, the greater the likelihood of other associated disabilities, such as limited speech, epilepsy, and autism spec- trum disorders (ASD) (Arvio & Sillanpa ¨a ¨, 2003). It has been suggested that a combination of diagnoses results in specific and distinct subgroups, such as people with ID and ASD (Matson & Shoemaker, 2009). The greater the severity of intellectual disability, the more complex the process of ascribing communication or behaviours to a specific diagnosis. People with severe or profound intellectual disability fall along a spectrum of communication ability, from Correspondence: Hilary Johnson, Scope Communication Resource Centre, 830 Whitehorse Road, Box Hill, Victoria 3128, Australia. E-mail: hjohnson.crc@scopevic.org.au Journal of Intellectual & Developmental Disability, September 2010; 35(3): 175–186 ISSN 1366-8250 print/ISSN 1469-9532 online ª 2010 Australasian Society for the Study of Intellectual Disability, Inc. DOI: 10.3109/13668250.2010.501026