The Stories of Parents who have an Adult Child with High-Functioning Autism or Aspergers' Syndrome - a Narrative Study

Abstract

Background and Aims: Although existing research has begun to explore the experiences of parents who have an adult child with Autism, there are limited studies available that explore how a parent makes sense of this experience over time and how they story that experience. In line with the gaps in the research, the aim of the present study is to hear what stories the parents who have an adult child with HFA (High-Functioning Autism) or AS (Aspergers Syndrome) tell and further understand how these stories may reflect changing parental roles over time. The parents constructions of their role within that experience are considered as well as the wider and social contexts of those stories told. This is considered an important area of research, to enable a rich exploration of this area with parents who have adult children with a diagnosis of HFA/AS.

Methodology: This study utilises a qualitative approach. A total of seven participants were included, all of which were parents who have an adult child with a diagnosis of HFA/AS. All parents were interviewed with a semi-structured interview guide to elicit storied experiences over time. Six individual stories and one joint story are included in the analysis. A Narrative analysis approach is utilised within this study to transcribe, analyse and interpret the findings.

Analysis and Findings: Global impressions of each interview are presented initially with reference to both performance and structure of each storied experience. The performances of the narratives are varied and include performances aimed to deliver understanding and awareness to a wider social audience and some that aim to connect emotionally. Individual stories are analysed for content, identifying storylines. Collective storylines are then presented as a result of shared storylines emerging through the data. The strongest narratives are identified by three main plots which include the first plot of ‘Losing, Questioning and Ultimately Attempting to Strengthen One’s Sense of Self’ which captures the negotiation of the parent role, questions of self-blame and the loss of an alternative life. The second plot of ‘The Making, Breaking, yet Ongoing and Painstaking Relationships with Services’ identifies the on-going challenging relationships with a variety of service provisions, including educational, health and social care, with an overwhelming parental sense of having to advocate on behalf of their child. The final main plot of ‘Nurturing a Past, Present and Future Relationship with My Son’ is also storied, encompassing narratives related to identifying positive attributes within their son over time, the changing nature of their relationship and the future for their adult child. The context and broader narratives of gender, ‘normal’ family-functioning, role of the parent and independent living were also present in the parent’s stories. These findings are discussed with reference to the strengths and limitations of the methodology, clinical implications and directions for future research.