‘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 UK

Background:  Children of migrant parents living in western countries are more likely to have an autism diagnosis than the general population, particularly autism with intellectual disability. Somali migrant populations carry a particularly high burden. Social stigma is commonly experienced by parents of children with autism, and can be more challenging for some parents than their child’s impairments. There has been no previous in-depth exploration of autism-related stigma within a Somali community.

Objectives:  To explore 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.

Methods:  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. Some parents isolated themselves and withdrew emotionally to protect themselves and their children, while others felt they were avoided and excluded. 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. The disruptive behaviour associated with autism and the invisibility of the condition were identified as particularly difficult for others to understand. There was evidence of enacted and felt stigma and examples of discrimination. To resist stigma, parents countered negative labelling by finding their own language to describe their child’s condition, learnt about autism, and drew on their religion and peer support from other parents.

Conclusions:  Somali parents of children with autism experienced considerable stigma, in the form of labelling and stereotyping, as well as more overt forms of discrimination, leading to social exclusion and isolation. Supporting Somali parents to deal with stigma requires raising awareness of autism within the community, facilitating peer support, building on parents’ existing coping resources and ensuring appropriate professional services and interventions are available.