Increasing recognition of autism in Somali migrant communities means that appropriate support services are needed. Attitudes to autism and barriers related to help-seeking in these communities are poorly understood. We aimed to assess what families affected by autism need, and how health, education and social care services can support them. In partnership with the local Somali community the research team conducted 15 in-depth interviews with parents affected by autism. Two themes are reported; ‘Perceptions of Autism’ and ‘Navigating the System’. Our research shows the importance of understanding cultural views of autism and the need to raise awareness, reduce stigma and provide support to encourage families not to delay seeking help for their children.

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Background Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a ‘lay’ person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact.

Research on the experiences of Arab families of children with autism living in non-Arab countries is scarce. A survey investigated the support needs, psychological distress, and parental relationships of Arab parents (n = 100) of children with autism living in the United Kingdom (UK). The survey consisted of five main questionnaires: a demographic questionnaire, the GO4KIDDS Brief Adaptive Scale, the Family Needs Survey, the Strengths and Difficulties Questionnaire, and the Hospital Anxiety and Depression Scale. Descriptive analysis indicated that the most frequently identified support needs were information, community services, and explaining to others. Parents reported high levels of psychological distress, a high level of parental relationship satisfaction with their spouse, and few parental disagreements about their child with autism. Regression analyses showed that increased child behavior problems predicted more total family needs. Higher levels of child prosocial behavior, the better health status of parents, and a larger number of children in the family were associated with lower levels of parental psychological distress. A longer time living in the UK was associated with more parental disagreement over issues related to the child with ASD. Reducing child behavior problems and increasing child prosocial behavior may be important targets for support and intervention to improve outcomes for Arab parents of autistic children.

Rates of autism in Somali migrant communities are increasing but many families find it hard to accept their child's diagnosis and do not engage with health, education or social services to support their children. When a local network of Somali parents approached the University of Bristol to request that research focus on their needs, a new research partnership evolved. Using a community based participatory approach the team designed a qualitative study which aimed to assess what Somali families affected by autism need, and how health, education and social care services can support them. In-depth interviews were conducted in both English and Somali with 15 parents who had a child with autism. Key themes identified in the data increased understanding about the experiences of Somali families affected by autism, cultural perceptions of autism and the challenges of navigating the health, education and social care system. In this presentation the co-researchers reflect upon their experiences of conducting research with this under represented group. They reflect on how they negotiated their status as insiders and outsiders, both within the Somali and research communities. The process of recruiting participants, conducting interviews together in two languages, jointly analysing the data and disseminating the findings is discussed, with particular focus on role boundaries and the successes and challenges encountered during the project. The presentation highlights the value of partnership working with local community groups to effectively conduct research and raise awareness about stigmatising conditions.aThe research is supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West) at University Hospitals Bristol NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.