Somali and Eritrean parents experiences and challenges in the diagnosis and early intervention of autism spectrum disorder in Norway

Children of immigrants in Norway have a higher risk of being diagnosed with autism spectrum disorder (ASD) compared to non-immigrant children. However, some immigrant groups may receive a late diagnosis, thus missing out on beneficial early interventions. The aim of this study is to explore parents’ experiences with the early intervention for autism in Norway. We conducted 15 in-depth interviews (IDIs) with immigrant parents of children with autism living in five different cities across Norway. The interviews were held between November 2023 and February 2024. The study information was shared through social media (Facebook) in Somali and Tigrinya. Nine participants contacted the researcher to confirm their willingness to participate in the study, while the remaining six participants came through snowballing. The interviews were conducted in Somali for Somalis or Tigrinya for Eritrean participants. The interviews were audio recorded and transcribed verbatim by the interviewer and research assistant. Thematic analyses were used for the data analysis. The data analysis was guided by the Tanahashi framework of health service coverage. Four key themes emerged from the interviews, which were organized according to the Tanahashi framework: Parents’ perception of the availability of early intervention services; how well the interventions aligned with family expectations; the quality of the partnership between parents and service providers; and the challenges related to late diagnosis. Overall, the participants were predominantly satisfied with the interventions provided for their children. However, they expressed significant dissatisfaction with diagnostic services, indicating that this aspect was a major source of discontent. Long waiting times for autism diagnosis can cause considerable stress and anxiety for parents, as they delay the child’s access to necessary interventions. It is crucial that healthcare providers listen to and address parents’ concerns about their child’s development effectively and promptly. Further research is needed to understand the level of satisfaction with the intervention among parents with lower levels of education and those who are not proficient in the language of the host country.