Date of Award

2016

Document Type

Chapman access only

Degree Name

Doctor of Philosophy (PhD)

Department

Education

First Advisor

Dianne Ferguson

Second Advisor

Jeanne Anne Carriere

Third Advisor

Laura Parra

Abstract

The focus of this dissertation was to gain a better understanding of how families construct autism. Studies have overwhelmingly used the medical model or the institutional narrative to interpret how autism is understood in families. More recently, a counter-narrative has emerged resisting this medical model. Both narratives, however, simplify the intricate nature of the disability construct within families. Additionally, the term “family” has been used euphemistically to refer to mothers, fathers or siblings of children who have autism. This study explored the constructs of the whole family through shared stories of their day-to-day lives.

Through a narrative inquiry, this study used semi-structured interviews and participant observational data collected in homes and communities of three families who have elementary school-aged children diagnosed with autism. Selection criteria consisted of English-speaking families who completed a university-based early intervention program. Attempts were made to select multidimensional or diverse families. Resulting data were analyzed using NVivo software. Five findings emerged. First, contexts and the interactions held within them played a significant role in the type of narrative that was used to construct disability. Second, constructs of disability were in process and fluid. Third, families held competing constructs of disability at both the group and individual levels. Fourth, the dominant cultural narrative of disability founded upon the medical model was used by families; however, its use was predicated on the desire to protect family members (i.e., child with disability as well as siblings) from perceived and directly-experienced exclusions from mainstream society. Fifth, a dominant construct of disability existed within families and was contingent upon the strength of that construct within various contexts with which the family engaged.

Knowledge was added to the current literature on the complexity and fluid nature of the disability construct at the group and individual levels. In addition, these constructs were argued to be influenced by the interactive contexts and the embedded narratives of disability. Knowledge generated by this study can be used to integrate different lenses within professional training programs, and help to re-imagine the methods and aims of research that explore families who have children with disabilities.

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