How I turned my life experiences into a NIHR-funded research project
I came to the UK at the age of 11 with my family, fleeing civil war in Somalia. My first-born son began to show unusual signs, such as laughing at himself and observing objects for a long time. He had little sleep and no eye contact. At his two-year development check, the health visitor referred him to a local nursery.
I was plunged into a world I didn’t understand. I met a string of professionals, all with different job titles that I’d never heard of before. I had no idea what the meetings were about. I got reports in the post, which I never really understood.
They said, “he has autism”. I’d never heard this word before. There is no word for autism in the Somali language, and it’s not yet really recognised as a condition in Somalia. I thought this meant he was mentally ill. I felt hopeless.
When I broke the news to my family, they said there was nothing wrong with Zak and that he was healthy. They told me that another member of the family developed speech late. They tried to reassure me: “Zak will talk soon, what do western doctors know?” But also: “Don’t tell anyone there’s something wrong with your child, it will bring shame to the family.”
But the truth was that my son had autism, a neurodevelopmental disorder which comes with a series of impairments. I wasted so much time between the opposing perspectives of my family and the professionals who had diagnosed my baby with severe autism. I desperately looked for information on the subject. At first, I understood it to be a mental illness, which comes with social exclusion and stigma in the Somali culture.
Over the next five years, I tried to understand autism and how services for autistic people operated. I threw myself into local events and initiatives about autism while moving away from my social groups that perceived autism negatively.
This was a very difficult decision, but I felt it was the only way to get help for Zak. I developed my understanding of how to facilitate his social interaction and communication skills, through conferences and higher education. We had a breakthrough when Zak started using Makaton sign language and developing verbal communication.
It was only once I understood my son’s autism that I could help him. I saw Zak’s progress, while other members of my local community were hiding their children who were similar to Zak. I realised I needed to educate and empower my community. I set up Autism Independence (AI), which aims to raise awareness of autism in the Somali community and among the professionals involved in their children’s care.
As I met other families affected by autism, I learnt that my community is just one of several migrant groups with a higher prevalence of autism. I heard about Dheeraj Rai, a researcher at the University of Bristol involved in the first autism and Somali research in Sweden. I got in touch with him and asked to meet. I asked him whether more research could be done to discover why there was such a high prevalence within the Somali community. Dheeraj suggested we applied to an open call for research ideas to the newly established NIHR Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West). He explained that this opportunity might not allow us to explore the reasons behind autism. Instead, we could do some work to understand the difficulties that families in Bristol face to get support for their children with autism.
We submitted the idea for research to CLAHRC West, who works with partner organisations, including the NHS, local authorities and universities, to conduct applied health research and implement research evidence, to improve health and healthcare across the West. The panel reviewing applications saw our idea as a unique opportunity to co-produce research with members of the Somali community, the second largest migrant group in Bristol.
Working alongside Fiona Fox, a senior research associate at CLAHRC West, we co-produced a qualitative study of Somali parents and held interviews, both in the Somali and English language, which allow participants to tell their stories in their language of choice.
At the time I was studying for my MSc psychology of education and, because Fiona and I were able to discuss our interviewing technique, it helped my understanding of conducting qualitative interviews and undertaking qualitative analysis.
Disseminating the research findings have enabled me to access a wide audience to share the barriers experienced by Somali families with autism. It allowed me to combine my lived and learned experience (living with autism, social work, research experience and MSc) for social change. The positive response to the research showed me the power research can have in giving more of a voice and raising awareness about autism in our community. This increased my motivation to conduct a PhD in this area. Furthermore, throughout this process, I immediately felt how important it is for participants having a role with the whole process of the research rather than simply getting data from them.
After sharing the research findings, we were successful in gaining funding to make a short film to be used by Somali families to better understand autism and also by professionals who work with them to help find solutions to the barriers faced. We ensured that the AI families were informed and involved in making decisions about at every step of the process. Seeing how some of our parents have bravely agreed to take part in the film is proof to me that things are changing in our community: we are not hiding our children with autism, instead, we are spreading information and understanding both to the professionals and to the Somali community. This partnership has shown my community that research can be co-produced with them and can help to begin making changes for them.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.