Research That Matters (January 17 - 20, 2008)

This study explores the role of family discourse in delineating and shaping social orientations on childhood disability, difference, and well-being in the everyday lives of children diagnosed with high-functioning autism and Asperger's syndrome. Although the research literature suggests that the social course of chronic illness and disability is shaped within relational contexts of local moral worlds (e.g., Ingstad & Whyte, 1995; Kleinman, 1988; Rolland, 1994, 2003; Walsh & Anderson, 1987), little research to date has directly examined the role of on-the-ground communicative processes in cultivating and shaping culturally relevant orientations towards illness, well-being, normativity, and difference. The current study addresses this research gap, providing a detailed focus on everyday family communicative processes in situ. As such, the study examines how family members take up, contest, adapt, and re-work explanatory principles as culturally available sense-making resources in guiding everyday practical actions, decisions, perspectives, and orientations towards autism and Asperger's syndrome.

METHODS:

Employing ethnographic participant-observation field methodology, the research draws upon ethnographically informed video- and audio-taped data of naturally occurring family interaction in the lives of 17 children, ages 8-13, diagnosed with autism and Asperger's syndrome. The data corpus comprises 276 hours of naturalistic video- and audio-recordings, documenting the children's quotidian lives amidst various family and community contexts. Data were catalogued and then digitized for purposes of transcription, coding, and analysis using Sorenson and vPrism computer software that allow digitized images and audio-tracks to be temporally synchronized with corresponding written transcripts. The data were transcribed according to conversation analytic conventions (cf. Sacks, Schegloff, & Jefferson, 1974), then coded and analyzed along relevant dimensions using discourse and narrative analysis to identify and trace salient actions, stances, and participatory modes involved in mentoring the children's competencies, identities, and worldviews (cf. Ochs & Capps, 2001; Schieffelin & Ochs, 1986) in relation to their autism conditions.

RESULTS, CONCLUSIONS AND IMPLICATIONS:

Close moment-by-moment analysis of family discourse reveals that family members openly grapple to comprehend the children's conditions, limitations, and talents, and to clarify effective ways of encouraging the children's optimal development. Notably, the children, themselves, at times, display an acute awareness of their marked differences and actively attempt to make sense of these differences via conversational activities with others. In particular, narrative co-tellings within the family sphere generate hope regarding the children's potentialities for meaningful inclusion amidst the social surround. Here, the children are mentored in skills of conversational narrative for purposes of establishing and maintaining friendships, resolving conflicts, and engaging in collaborative problem solving tasks. Such processes portray the children in a hopeful yet realistic light, scaffolding and encouraging spheres of capability. Viewing the family as a unit of care, the study underscores how family members serve as providers as well as consumers of mental health care, employing a strengths-based perspective in mentoring the children as valuable, dynamically engaged family and community members. Moreover, the study moves beyond a focus on childhood vulnerabilities to appraise the social competencies and compensatory strategies utilized by children with autism spectrum conditions.