Discussing autism in the Somali community in Bristol

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.

• Saturday 15 October 10.30-11am at the Wellspring
  Healthy Living Centre, BS5 9QY
  This event is part of the Bristol Healthy City Week launch
• Wednesday 19 October 10.30-11am at Junction 3
  Library, BS5 0FJ

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.