Understanding and awareness of autism among Somali parents living in the United Kingdom.
Somali families in the UK may use 'autism' as a blanket term for any atypical development—assess cultural understanding before labeling.
01Research in Context
What this study did
Researchers talked with Somali parents living in the United Kingdom. They wanted to learn how these parents understand autism and other developmental differences.
Parents looked at short stories describing children with autism. Then they shared what they called each behavior and how they felt about it.
What they found
Parents knew the autism stories, but they also labeled other odd behaviors as 'autism.' They used the word for any child who seemed different.
Religious ideas and fear of shame shaped how they talked about services and schools.
How this fits with other research
Hewitt et al. (2016) counted kids in Minneapolis and found Somali and White children get autism labels at about the same rate. The new UK study does not clash; it shows parents may over-extend the label, yet clinics still catch real cases.
Ataro Adere et al. (2024) asked Ethiopian and Eritrean parents in the United States about services. Both papers show Horn-of-Africa families meet cost, language, and stigma walls. The UK work adds the detail that parents lump several delays under one word.
Duerden et al. (2012) reviewed UK records and saw South Asian families use fewer learning-disability services. The Somali parents’ mix-up may help explain why: if everything is 'autism,' other needs can be missed.
Why it matters
Before you teach a Somali family, ask what the word 'autism' means to them. Clarify which behaviors belong to autism and which do not. Use neutral language and link support to religious values when appropriate. This small step cuts stigma and builds trust, so your intervention starts on solid ground.
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02At a glance
03Original abstract
Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361318813996