Co-creating advocacy for and research about autism among Somali children in Järva – to diminish health inequity and increase the relevance of autism research for all

Research idea and purposeAutism spectrum disorder (from now on autism) with intellectual disability (ID) is a severe and long-lasting disorder.

Repeated systematic reviews show that migrant children have an increased risk of it, but the use of available care is lower in the group. Based on this we have two, separate but interlinked, general research ideas.

The first is to elucidate the complex reasons why children of migrants have an increased risk of autism with ID and go from evidence to action to prevent it.The second is to co-design, evaluate and implement interventions to promote a better understanding of the disorder in high-risk migrant groups to decrease stigma and increase the use of available evidence-based care.The focus of the planning grant is to start together with the most affected population, the Somali population.

Estimates from Sweden show that children with a Somali descent have about a four times higher prevalence as compared with non-Somali children, and this is in line with international studies.

The purpose of this planning grant is to, together with parents of children with autism and ID and trusted Somali community leaders and health care staff, co-create a roadmap for research on the general research ideas.Work plan, methods and project realisationWe have a broad network of stakeholder contacts in Järva outside Stockholm and there we will adopt a community-based participatory research approach.

Together with three Somali speaking research assistants we will do focus group interviews with Somali parents of children who have autism with ID and locally trusted community leaders throughout the summer 2025.

The results of the focus group interviews will be published in a report in plain and accessible language that will be translated to Somali.

The report will be the base for a workshop followed by activities to co-create a viable way forward.Societal relevance and utilisationAutism with ID is a highly disabling disorder with large human and economic costs.

Children of Somali descent in high-income countries have a severely increased prevalence and the parents wonder why their children are so disproportionally affected.

Research of causes, and interventions to make affected children thrive must include and enlist the help of those affected not to overlook risk factors and to increase the likelihood that the research findings can be applied in real life.