What do family narratives reveal about parental perceptions of societal attitudes towards autism and how does this impact upon family functioning?

Smith, Lynda (2023). What do family narratives reveal about parental perceptions of societal attitudes towards autism and how does this impact upon family functioning? University of Birmingham. Ph.D.

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Abstract

Relatively little is understood about the lived experiences of parents who have a child with a dual diagnosis of autism and learning difficulties (autism and LD). Understanding these experiences is important, as parents are pivotal in influencing the quality of life and longer-term outcomes for their children. One dimension of parental experiences, where there is a gap in UK research, is societal attitudes towards autism. A qualitative study was conducted with Interpretative Phenomenological Analysis (IPA) to explore the experience of eight parents of children with autism and LD and other co-occurring conditions, living in Southeast England. Semi-structured interviews were used with parents to collect data at two different points in time. In the first interview, parent narratives were captured about their daily experiences and individual stories were co-constructed. In the second interview, parental perceptions of attitudes towards autism were explored.

This study used a conceptual framework, which drew upon the Bio-ecological systems theory, this situated the parent/child dyad in their world to understand the societal impacts on their experiences. A drawing of the conceptual framework was used as a visual tool in both interviews, enabling parents to visualise their interactions. From this, parents decided which individuals or organisations, for example grandparents, they wished to explore in relation to their experiences of attitudes. Parents gave examples of how unsupportive and supportive attitudes presented in these contexts.

The findings provide insights into the unique experiences of parents in this group. Unsupportive attitudes were identified as having a significant effect on family life, which often compounded parents feelings of loss for their expected child. Attitudes were often subtle or hidden. Parents particularly highlighted how grandparents’ attitudes were related to social expectations. Notwithstanding these challenges, parents also conveyed their experiences of supportive attitudes, these contribute towards a positive model of attitudes. Implications for practice include the need for professionals to better understand autism and how unsupportive attitudes impact upon families, and for providers of autism training programmes to find ways of engaging grandparents.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):