"It was like walking without knowing where I was going": A Qualitative Study of Autism in a UK Somali Migrant Community.
Fiona Fox, Nura Aabe, Katrina Turner and 2 others
PMID 27858263WHAT IT FOUND
Somali parents in Bristol said autism was a new word, and stigma, faith and family advice made acceptance hard.
They faced confusing diagnosis, language barriers and fragmented services, so help was delayed. Parents asked for Somali link workers and clear explanations.
Key findings
01Many parents said autism was an unfamiliar word, and the lack of a Somali term or visible disability made diagnosis hard to accept.
02Stigma, fear that social services might remove the child, and advice that the child would grow out of autism delayed help-seeking.
03Families struggled to navigate services because of language, jargon, unfamiliar roles and fragmented support, and they asked for Somali link workers.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
This is a small exploratory study of 15 families in one UK city, so it cannot show what all Somali families think or whether any service improves outcomes. The first nine parents volunteered through a Somali parent organisation, so they may have had more information and support than families who did not take part. Few fathers were recruited, and some participants were reluctant to discuss difficulties, so some family and community experiences may be underrepresented. The children were aged 4 to 13 years, so the study did not explore older adolescents or adults. Only two of the four themes are reported, so other findings are not available in this paper. Some participants seemed to mistrust the purpose of the research, which may have limited what they shared.
Declared interests
The funding statement names NIHR CLAHRC West. The supplied text does not show a separate conflict-of-interest declaration. One author founded Autism Independence, the Somali parent organisation that helped design and carry out the research.
The easy way to misread this
Do not read these findings as evidence that Somali parents generally delay autism diagnosis because of culture, or as proof that Somali link workers improve outcomes. The study describes the experiences of families in one city and does not test any service.