Knowledge and Awareness of Autism Amongst Somali Parents in the United Kingdom

Background: Despite rapid growth in autism research over the past few decades, little attention has been given to understanding autistic individuals in minority ethnic communities – placing them at serious risk of being under-recognised and under-served. The current study focuses on autism among the UK Somali community – one of the largest and most established communities in Europe, and one of the many immigrant groups affected by autism. While emerging work has examined UK-based Somali parents’ experiences of accessing an autism diagnosis for their children, little is known about parents’ knowledge and awareness of autism more broadly.

Objectives: The aim of the current, qualitative research was to examine knowledge and awareness of both typical and atypical development amongst UK-based Somali parents (of both autistic and non-autistic children); a minority group that has, until relatively recently, been neglected in autism research.

Methods: 32 parents (30 women, 2 men; from separate families) participated in this research, including 16 parents of autistic children (M age = 39.56 years) and 16 parents of non-autistic children (M age = 39.50 years). Parents were presented with seven vignettes, each of which described a child with typical or atypical development (including autism, attention deficit hyperactivity disorder, or global developmental delay). After reading each vignette, parents were asked to reflect on whether the behaviours described were similar to those of other children they knew; if not, they were asked whether they have a ‘name’ for these behaviours and to consider what might cause them. This was complemented by more general questions regarding how children develop as they grow older. Parents of autistic children were also asked to reflect on their own children’s development.

Results: Interview data were analysed using thematic analysis. Four key themes were identified: (1) ‘Somali people don’t understand’, reflecting a general lack of understanding of autism within the Somali community and the prejudice and discrimination that might ensue; (2) ‘Differences between Somalia and the UK’, reflecting how many parents felt autism did not exist in Somalia and the lack of provision available for autistic children in Somalia; (3) ‘Strong reliance on faith’, in enabling parents to understand and accept their children’s diagnosis; and (4) ‘Ways to support Somali families of autistic children in the UK’, to promote awareness of autism and build capacity to better support families of children on the autism spectrum.

Conclusions: The parents of autistic children in this study highlighted the difficulties they experienced with understanding autism, as well as barriers in accessing help and support; some of which were unique to the Somali community, and some that were perceived to be more general across ethnic groups. Promoting acceptance of autism within the Somali community – in the UK and internationally – seems to be a key target for intervention efforts.