Adult autism in the Sylheti family: a qualitative exploration of sibling and parent experiences over time

This thesis reports on a practitioner research project examining the experiences of Bengali, specifically Sylheti, families living in the UK who have an adult family member with autism spectrum disorder (ASD). While there is extensive research exploring the experiences of parents and siblings of children diagnosed with autism, there is a lack of research concerned with the experiences of South Asian families, and specifically, the experiences of Sylheti families with an adult autistic family member. The study reported in this thesis was qualitative and interview-based. Four families were involved, including the parents (three mothers, one father) and the siblings of the autistic adults (two brothers and three sisters), with sixteen interviews completed in total. A narrative-based interview methodology was used, and the interview accounts were analysed thematically. Six main themes were identified regarding the experience of living with an autistic family member over time. These related to accepting autism, family cultures and the role of culture in the family, sibling identity and relationships, the experience of different forms of adversity, the emotional reality of life with an autistic family member and navigating external support. This thesis contributes to the broader professional field in helping to deepen understanding of the experiences of Sylheti families with autistic family members and how these families make sense of their experiences in a specific sociocultural context. This has practice and policy implications regarding how members of the Sylheti community can engage with local authority support for autistic persons and how the process of engagement with help can be articulated on their terms.