Promoting culturally sensitive services to support Somali families affected by autism
Dr Fiona Fox, Therapeutic Media, and Autism Independence together won ESRC Impact Acceleration Account (IAA) funding to produce a film that supports both the needs of the families and the practitioners trying to help them.
Internationally the Somali community, like other migrant groups, have high numbers of children with autism who are likely to be severely affected. Autism Independence (AI) was formed by members of the Bristol Somali community in 2013, all of whom have a child with Autism, and currently supports 80 families. A collaborative research project involving AI and CLAHRC West/ Bristol Medical School identified the challenges they face in getting support for their children.
The findings also highlighted the importance of service providers understanding cultural views of autism, as well as the need to raise awareness within the community, reduce stigma and provide support to encourage families not to delay seeking help for their children. For example, there is no Somali word for autism, making it hard to understand and accept. Existing cultural stigma related to mental health, challenging behaviour and disability reinforces families' tendency to hide their child and to avoid seeking help early. Parents often feel isolated and do not engage with support services for their child.
When the findings were shared, many organisations and agencies asked for further information, resources and training to help them to work more effectively with Somali families affected by autism.
Together Therapeutic Media, AI and the Bristol team led by Dr Fiona Fox won ESRC Impact Acceleration Account (IAA) funding to produce a film that would support both the needs of the families and the practitioners trying to help them.
The project team decided to continue working with the model of co-production that had proved successful in the earlier, research phase. Even so, planning, making and launching the film took time and effort – community meetings to discuss the project, introducing the filmmakers to the AI families, careful planning of the film content, and finally securing the footage. This last was handled extremely sensitively, involving as it did both adults and children as well as professionals who work with Somali families affected by autism.
Intensive editing and voice-over work produced one version with English voice-over for the Somali speaking parts and another with Somali voice-over for the English-speaking parts. To deliver the right mix of perspectives from Somali parents and the professionals who work with them, the first 7 minutes of the film features only the voices of the Somali parents.
Overcoming Barriers:Autism in the Somali Community premiered at Watershed Bristol in April 2019 to a diverse, maximum capacity audience. Feedback indicated that many people found the film ‘moving and inspirational’.
Within 24 hours on YouTube, it had been viewed over 250 times in English and 90 times in Somali. And a month after, 150,000 times. The Somali version of the film has also been viewed internationally, in USA, Somalia, Sweden, Kenya, Canada, Germany, Norway, Netherlands, Australia, Denmark, Austria, Saudi Arabia, United Arab Emirates and India.
https://www.youtube.com/watch?v=Osr8qFLy3CM&feature=youtu.be - English version
https://www.youtube.com/watch?v=71fnc1z1tQc&feature=youtu.be - Somali version
The benefits and impacts continue to emerge over time. For example, the YouTube comments section is stimulating discussion among Somali communities, providing AI with further opportunities to increase understanding and tackle stigma about autism within this community.
The film is also proactively used among practitioners. It is part of AI’s Intersectional Autism Competence training for professionals in health, social care and education sectors: a resource for medical students at the University of Bristol and a joint resource in Interprofessional Learning with UWE, as well as being shared across UK University networks. Professional networks in relevant sectors are also actively disseminating it across Health, Social Care, Education, and Bristol City Council. The film is being shared with key research organisations such as the Royal College of Psychiatrists and the International Society for Autism Research and is featured on an NIHR blog.
Therapeutic Media described working on it as “an outstanding project…. Working with Fiona Fox (CLAHRC West) and Nura Aabe (Autism Independence) has been inspiring.…their level of knowledge regarding the subject matter of autism meant that interviews and footage were highly focussed. This enabled the collective wisdom of the Somali community and the service providers to be captured [and] create an easily accessible resource, in two languages, that is already making a positive difference.”
And Autism independence said “Working on this film in partnership has been extremely empowering for all AI members. In particular, the launch event was a real opportunity to share families’ concerns and challenges on the same platform as service providers. This also meant we were able to share solutions.… The film will also demonstrate how being involved in research can have lasting impact and benefit for both voluntary sector organisations and the communities they serve.”
Image credit: University of Bristol