Like other migrant groups, the Somali community have high numbers of children with autism, many of whom are likely to be severely affected. More than 70 families in the Bristol Somali community have one or more children with autism. They are supported by a community organisation, Autism Independence (AI), led by Nura Aabe.
Our collaborative research with AI identified the challenges these families face in getting support for their children. There is no Somali word for autism, making it hard to understand and accept. Cultural stigma surrounding mental health, challenging behaviour and disability means that families often hide their child and don’t seek help early. Parents often feel isolated and do not engage with support services for their child.
The research findings highlight that service providers need to understand cultural views of autism in order to support Somali families. Within the Somali community, there’s a need to raise awareness, reduce stigma and provide support to encourage families to seek help for their children.
When we shared our findings from the collaborative research project with AI, many organisations asked for information, resources and training to help them work more effectively with Somali families affected by autism. We are producing a short film to meet this need. The film aims to increase awareness in the Somali community itself while being a resource for professionals supporting families with autism.
Nura’s community theatre project ‘Yusuf can’t talk’ showed us that story-telling is a powerful way to communicate this kind of sensitive information. It can demonstrate families’ lived experience, from assessment and diagnosis through to engagement with services.
AI and CLAHRC West are producing the film with the Therapeutic Media Company, which specialises in films for the health and social care sectors. They have a strong track record of fostering inclusive, creative partnerships using participatory techniques.
The film will be used:
- as a stand-alone resource
- in conjunction with AI’s existing training
- to train healthcare professionals at university
This project is funded by the Economic and Social Research Council (ESRC) Impact Acceleration Account.
For the Somali community, the film will help challenge the stigma surrounding autism and families will benefit from more understanding about autism and the support that is available. The film will be accessible to Somali communities internationally, who share common experiences in terms of their understanding and acceptance of autism.
Making this film available to professional groups and trainees should help improve understanding and communication between service providers and Somali families who are affected by autism, potentially enhancing support and services for families.
AI will benefit through exposure to important issues within their community, as the film will provide clear evidence of how involvement in research can have lasting impact and benefit for their community. AI will be able to use the film when talking to or training health, social care and education professionals.
We hope that both Somali and English versions of the film will be available in April 2019 and that it will be widely used.
- Nura Aabe, Autism Independence
- Matthew Hemson, Therapeutic Media Company
- Dheeraj Rai, University of Bristol