“It was like walking without knowing where I was going”: autism in the Bristol Somali community findings published

The cultural and societal barriers that Somali families with children with autism experience are explored in a paper published today in the Journal of Autism and Developmental Disorders. The NIHR-funded research team, made up of University of Bristol and Somali community researchers, interviewed 15 Bristol-based Somali families with experience of autism.

The research came from the National Institute for Health and Care Research Collaboration for Leadership in Applied Health Research and Care West (NIHR CLAHRC West) 2014 call for project ideas. The research idea was put forward by Nura Aabe, founder of Autism Independence, and Dr Dheeraj Rai, consultant senior lecturer at the University of Bristol, whose previous research has highlighted the issue of autism in migrant populations. Autism Independence supports Somali families in Bristol who are affected by autism. Nura came to the UK from Somalia aged eight, and is the mother of a child with autism herself.

The paper, ’“It was like walking without knowing where I was going”: A qualitative study of autism in a UK Somali migrant community’, examines autism in this particular community because research suggests that there is a higher prevalence of autism among migrant communities, although the reasons for this are not fully understood. There is also no word for autism in the Somali language.

The study aimed to gain a better understanding of these families’ perceptions, experiences and support needs. Through in-depth interviews the team explored how autism is seen and understood, how parents find out that their child has autism, and their experiences of accessing health, education and social care services.

Four major themes emerged:

• My child is different
• Perceptions of autism
• Navigating the system
• Support

The paper focusses on the two themes of perceptions of autism and navigating the system, because they illuminate the social and cultural context which affect acceptance of autism and help-seeking.

Participants spoke of the lack of knowledge and understanding of autism in the Somali community:

“People in Somalia have not heard of autism before. No, they haven’t. There is no autistic person in Somalia. There isn’t anybody who doesn’t talk in Somalia. I haven’t seen anybody. And people said they haven’t seen anyone who don’t talk and have something like autism in Somalia.”

And the stigma they felt they and others faced in having a child with autism:

“I’m not the kind of person who hides my child and I’m not afraid; I’m not ashamed that my son has autism… I am not, but there are people out there who are ashamed. People hide; people say, ‘Don’t tell other people that my son has autism’… I don’t care what other people think. I’ve got my normal children and my son has autism. I don’t care what people think.”

The findings show that these families need help and support to negotiate and navigate the health, social and educational services available to them during assessment, diagnosis and beyond. Some participants thought that this role could be fulfilled by a link worker, ideally from the community or who speaks Somali and who has comprehensive understanding of autism, to support and guide families through the confusing early stages of understanding and acceptance. As one participant said:

“So, to understand what it meant would have made so much difference – a way that I could understand what was wrong with (my child). I wish I had more information and better explanation of what autism meant. It was like walking without knowing where I was going.”

The study highlights the importance of culture-specific issues in autism and the challenges and barriers that Somali parents encounter in understanding and accepting autism and accessing appropriate support. These findings suggest the need to increase understanding via a range of community channels in order to raise awareness, reduce stigma and provide support to encourage families not to delay seeking help for their children.

Nura Aabe said:

“The response to this research has been incredible. We have presented to local Somali families, community groups, council and charity workers and MPs, and our findings have really captured the imagination of everyone we’ve talked to.

“As a mother of a child with autism myself, I understand the confusion a diagnosis can bring, and the tensions between what families and friends think and what you’re told by professionals and service providers. This work is helping break down barriers and get these issues out in the open.

“From this research, I hope that professionals understand the challenges and stigma faced by these families, so that tailored services are put in place.”

Dr Fiona Fox, a researcher from NIHR CLAHRC West and University of Bristol, said:

“It has been a powerful experience and a privilege to learn about the stories of these families. I hope that through this research we can begin to address some of the inequalities in access to services and support that they face.

“We were lucky to work with someone as driven and committed as Nura, and we hope that this will lead to more collaborative research with local community groups to understand their health needs.”

Dr Dheeraj Rai, consultant senior lecturer at the University of Bristol, said:

“Our previous work has shown that some migrant communities have higher rates of autism. We also know that services often find it difficult to engage such communities, but there has been very little research to understand the experience of these communities.

“The findings of our small, but in-depth study provide valuable insights into the challenges and barriers to care that Somali parents of children with autism face. Our work highlights the importance of a cross-cultural understanding of autism in clinical work and research, and the value of engaging, empowering and working with communities to carry out collaborative research.”