‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

Abstract

OBJECTIVES: Social stigma is commonly experienced by parents of children with autism. Our aim was to understand the nature of stigma experienced by Somali parents of children with autism in the United Kingdom (UK), and to consider how they coped with or resisted such stigma. DESIGN: We used a community-based participatory research approach, collaborating with a community organisation of Somali parents. In-depth interviews with simultaneous translation were conducted with 15 Somali parents of children with autism living in Bristol, UK, in 2015. Parents were sampled purposively to capture diversity in children's age, severity of autism and time since diagnosis. Directed thematic analysis used Link and Phelan's model of stigma. RESULTS: Of the 15 participants, 12 were mothers (mean age 36). The 17 children with autism they cared for were 4-13 years' old, and five were girls. Two main themes with sub-themes were identified: the nature of stigma (labelling and stereotyping; separation; emotional reactions, discrimination and power), and coping and resistance (the power of language; faith as a resource; learning, peer support and community relationships). Children with autism were labelled and stereotyped (e.g. as 'sick', 'naughty', 'different') and parents blamed for not controlling them, leading to social rejection and isolation. Stigma was associated with a poor understanding of autism, a lack of vocabulary related to autism in the Somali community, and prejudice against mental illness and disability. There was evidence of enacted and felt stigma and examples of discrimination. Finding their own language to describe their child's condition and drawing on faith, learning and peer support were important resources in resisting stigma. CONCLUSIONS: Findings inform support for this community, highlighting the need to raise awareness of autism, enable parents to speak openly, and ensure appropriate professional services and interventions are available.

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