There is no word for ‘autism’ in the Somali language, but research suggests that children whose parents have migrated from Somalia to western countries, including the UK, may be at greater risk of developing autism than children from other groups. The needs of these families aren’t well understood, and local health services may not be supporting them in the best way.
NIHR-funded researchers at the University of Bristol teamed up with local community group Autism Independence, to work closely with people from the Somali community on a research project looking at the experiences of these families. It aimed to find out about the experiences of Somali families, living in Bristol, who have a child with autism and to understand how autism is understood in their community, and how health and social care services can be best delivered to support them.
Autism Independence, which supports Somali families in Bristol who are affected by autism, is led by Nura Aabe, who came to the UK from Somalia aged 8, and is the mother of a child with autism herself. Nura initially approached University of Bristol with this research project, and was encouraged to collaborate with the NIHR Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West) as part of their open call for research ideas in 2014.
The project approach, method and plan were all developed in partnership with Autism Independence, and the research team interviewed families, including mothers and fathers, as part of the research. All materials and interviews were translated by Nura, who was a co-researcher on the project and also acted as a ‘cultural interpreter’ between the researchers and participating families.
Nura Aabe said:
“My own experience of having a child with autism, and the contradicting advice I got from family members and professionals, inspired me to get this project off the ground with CLARHC West. Working on this project with the team has been a revelation, both in terms of what it has uncovered about attitudes to and experiences of autism in the Somali community, and the research process itself. I have found the experience fascinating – so much so that I am now a Community Researcher for Up Our Street! I would like to thank the research team for undertaking this project and hearing the voices of an often overlooked group of people.”
Dr Fiona Fox, a researcher from NIHR CLAHRC West and University of Bristol, said:
“We have been very lucky to work with someone as passionate, committed and capable as Nura on this project. Her drive and determination have been key to the success of our collaboration with members of the Bristol Somali community. It has been a true partnership between us and the community, and I hope that what we have found can inform policies and support services for these families, as well as informing further research and collaboration.”
Simon Denegri, NIHR National Director for Patients and the Public and Chair, INVOLVE, said:
“For the NIHR's research to be relevant to the UK's health and wellbeing its work must reflect the nation's increasingly diverse population in terms of ethnicity and background.
“This is a wonderful project demonstrating how the NIHR is approaching this challenge, in this instance working with the Somali community. Involvement with the community is essential to the success of such research and this project underlines CLAHRC West's particular strengths in public involvement and engagement.”
The team will present their findings at two special events during Bristol Healthy City Week. The events are informal discussions of the research findings, where everyone, including children, will be welcome and refreshments will be provided. There will be a Somali translator at both events.
They are also appearing on Healthwatch Bristol’s monthly wellbeing show, which focuses on Healthy City Week, on BCfm at 3pm on 11 October.
Nura has developed a play exploring the experiences of these families, which she has performed with others from the local Somali community. The research team will be presenting this work and talking about the play to MPs in Parliament on 2 November.Read more about how the study was designed and managed.