Alqunaibet, Taghrid; (2021) Ethnographic study of the religious coping forms of mothers’ experiences of bringing up a child with ASD in Saudi Arabia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Autism is increasing in prevalence and has become a global concern. It has been long recognised that the presence of autism can have a significant impact on family members and that autism can result in greater parental stress than other disabilities. A growing recognition in research has emerged about the religious beliefs held by the families of children with disabilities due to the significant role played by religion in shaping parents’ interpretation and understanding of the disability. Therefore, religious parents may draw upon their faith to help them cope, make sense and construct meanings around their child’s disability. A gap exists in the literature regarding the needs, concerns, and overall experiences of Arab Muslim parents of children with autism. A scarcity in the literature examining autism in the Gulf region has been acknowledged with no research to date in Saudi Arabia which has investigated the burden of autism on the family, child and society. What little research there is in this area has predominantly explored the experiences of parents in Western societies and mostly from a quantitative paradigm. We quite simply do not yet know how autism impacts on families in Gulf counties such as Saudi Arabia. Up until this point it has been quite unfathomable to ask about such experiences in this context, particularly of those most involved in their child’s care; mothers. This ethnographic study therefore set out to explore how Saudi mothers caring for a child with autism recognized and understood autism, what their cultural beliefs and understanding of autism were, and how they coped and adapted with their concerns, worries and needs regarding their children. Two ethnographic methods were employed in the study; participant observation and qualitative interviews. Data analysis showed that mothers’ responses clustered around particular themes. Three major themes emerged from the data (Autism invisibility within the wider society and the difficulties of getting and dealing with the diagnosis; Autism causality and the explanatory frameworks used by mothers to understand the condition; Various internalised and externalised stigmas associated with autism and the relationship of the condition to disability and disablement), each of which offered insight into Saudi mothers’ unique experience of coping, adapting and bringing up a child with autism. Mothers’ Unfinished journey, is the overarching global theme within which all three major organizing themes and sub-themes were grouped. The findings of this study are discussed in detail, as well as the implications of the findings and recommendations for future research.

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