Seach, Diana; (2021) Transculturalism in parents' experiences of caring for an autistic child. Doctoral thesis (Ed.D), UCL (University College London).

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Abstract

In the UK there has been a marked increase in children from minority ethnic families receiving an autism diagnosis but there continues to be a dearth in research that has explored the diversity of families’ lived experiences. The research sought to address this under-representation by using a transcultural approach to understand how families are drawing on multiple cultural influences in response to having an autistic child. Eleven parents from nine families who lived in one London borough were interviewed using a non-directive narrative approach. The families included two parents who were born in the UK, five who migrated to the UK as children and four who came to the UK as adults. All the families had a child with autism aged between four and seventeen years old, who attended either a special school or a mainstream school in the same London borough. Combining transculturalism with a narrative interview approach made it possible to pay attention to the ways in which families’ lives are transformed when they have an autistic child, how parents develop multiple identities in their interactions with professionals and family members across different social and cultural contexts and the impact this has on their sense of belonging to the community and networks of support. Analysing the interviews followed a case-based approach with themes examined within and across all cases. A thematic analysis of the families’ transcultural experiences showed that there were commonalities in their experiences of parenting children with autism as well as distinct and relevant cultural values and resources which influenced their individual responses to having an autistic child. The families wanted teachers in mainstream schools and those in their community to have more understanding and knowledge about how autism affected their lives and positive recognition of the solution-focused strategies that they were using to advocate for their autistic child’s healthcare and education. The findings from this research supported the development of a transcultural model that will be of value in developing culturally responsive pedagogical practice in autism education. The recommendations are that there is a need to further address culture and ethnicity in research on autism and special education, encouraging teachers to think about how they work with autistic children and the social and cultural realities that are an essential aspect of families’ transcultural lives.

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