Fanous, Marianne; (2024) ‘Caught in the middle’: a multi-perspective qualitative study on the understandings and experiences of autism among Middle Eastern and North African families and their autistic youth in the UK. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

The cultural and religious needs of autistic people and their families is a neglected area of research in the United Kingdom (UK) and around the world. This is despite a shift in the field towards more ecological understandings of autism and increasing recognition that autistic people from ethnic minority backgrounds face ‘double disadvantage’ in accessing timely support and are exposed disproportionately to stigma. Families from the Middle East and North Africa (MENA) region represent a growing proportion of the UK population but have often been overlooked in Western research. This conceptual introduction aims to review the literature regarding how culture impacts autism-related experiences, and its construction, with a particular focus on those from the MENA region residing in the UK. Emphasis is placed on caregiver experiences due to limited research with culturally diverse autistic individuals. Ecological theories of autism are explored, along with literature from MENA countries and research on MENA families in Western nations. The importance of a holistic family approach is underscored within the cultural context. Gaps in the literature are identified, emphasising the need for culturally sensitive research with MENA families in Western settings. The conceptual introduction concludes by justifying the empirical paper and outlining the research aims.

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