Exploring Perceptions and Experiences of Autism in a UK Somali Community: A Qualitative Study

Background:  Evidence suggests that autism may be over-represented in some migrant groups in Western countries, including Somalis. Whilst reasons for a higher prevalence of autism in these groups are unclear, it is acknowledged that immigrant populations require appropriate help and support in relation to autism services. The Somali community is the second largest migrant community in Bristol, UK but little is known about the needs of families raising children with autism and the culture specific aspects of seeking help from health, or education and social care services. Such information is essential in order to provide high quality services and reduce inequalities in care for this group.

Objectives:  The aim of this qualitative study was to address this gap in knowledge, to gain a better understanding of the perceptions, and experiences of autism within the Somali community, as well as their support needs.

Methods:  Using a community-based participatory research approach, the research was conducted in partnership with the local Somali community. Through purposive sampling, Somali parents who had a child with autism were recruited. Fifteen parents participated (12 mothers and 3 fathers), who between them had 17 children with a diagnosis of autism. Two co-researchers conducted in-depth interviews, in both English and Somali, guided by a semi-structured interview schedule. With consent interviews were audio recorded and fully transcribed. Thematic Analysis was used to analyse the data.

Results:

Four major themes were identified through analysis;

1) ‘My child is different’ covers the parents’ experiences of realising that their child was different to other children, their challenging behaviours and the impact on family life. It includes their hopes and fears for their children’s future.
2) ‘Perceptions of Autism’ highlights why many Somali families have difficulty accepting their child’s diagnosis, or engaging with services. As there is no Somali word for autism, parents struggle to communicate with, and often face conflicting messages from their community. Consequently children with autism are often hidden and families become isolated. Faith plays a crucial role in the process of acceptance.
3) ‘Navigating the System’; Parents often struggle to get help for their child because the health, social and education services are unfamiliar, fragmented and difficult to navigate. Language barriers exacerbate these challenges. At the point of diagnosis many parents wanted better explanations and information about autism. Participants expressed mistrust of social services and confusion about the best form of educational provision.

4) Support; whilst some parents valued the support of specific professionals and organisations, other identified support needs for themselves and their children. In particular peer support was valued and a need to increase understanding about autism within the community was identified.

Conclusions:  The findings highlight 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. They indicate the need to increase understanding via 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.