Autism, familial wellbeing, and first-person research methods

Year: 2021

Author: Baird-Bate, Kirsten

Type of paper: Individual Paper

Positive partnerships with parents and primary caregivers are a key premise of quality education.  Part of our efforts to reimagine Education must also then be to reimage these relationships.  Foundational to this reimagining process is the need for better understanding.This research used an innovative combination of survey and visual narrative methods to deliver new, more comprehensive perspectives on autism, caregiving, and wellbeing. Primary carers play a pivotal role in the lives of children with autism across their lifespan with the effectiveness of supports hinging on the wellbeing of primary carers. Current understandings of wellbeing within autism spectrum literature tend to be limited within a negative, dyadic, reductionist narrative, yet wellbeing, autism, and caregiving are multidimensional, complex constructs that shift according to context and time. Wellbeing of primary carers may be influenced by many factors not directly associated with caring for a child with autism. Rarely are socioecological factors considered and rarely has the primary carer been asked what they believe influences their wellbeing experiences.  More complete understandings are essential to better supporting children with autism and those who care for them.This study surveyed n~90 primary carers from across Australia with 6 of these carers further participating in a visual narrative process.  In this second phase of the research, primary carers took a photograph a day for 21 days before discussing the results in a 1-hour semi-structured interview. The results were thematically analysed.This presentation will deliver preliminary quantitative and qualitative findings from this research to allow insight into how primary carers conceptualise wellbeing.  The findings contribute to the development of reflective, strength-based, and family-centric supports and policies for children with autism and those who care for them.  The presentation will also touch on the benefits of using innovative research methods to help reimagine education and bring new perspectives to complex issues such as autism, caregiving, and wellbeing.