Perceptions of autism and experiences of stigma among Somali and Eritrean immigrant parents in Norway: a qualitative study

Autism is a major public health problem among immigrants, with immigrants from Somalia and Eritrea having one of the highest prevalence of autism in Norway. This study explored knowledge of autism and the experiences of stigma and discrimination among Somali and Eritrean parents of children with autism.

An in-depth interview was used to collect data from 15 Somali and Eritrean parents of children with autism. We used a pilot-tested semi-structured interview-guide. A mixed of convenience and snowball sampling was used to recruit participants who 1) identified as an Eritrean or Somali immigrant, 2) identified as a parent of a child with autism, and 3) were 18 years and older. The interviews were recorded, transcribed verbatim, translated, and cleaned for errors. A thematic analysis was used to analyze the data using Nvivo-14 software.

The findings showed that Somali and Eritrean parents had relatively good knowledge of the risk factors for and treatment of autism. Some parents had feeling that the MMR vaccine was behind the autism of their children. Similarly, five of the parents reported that bone marrow from camels can help alleviate the symptoms of autism. Widespread stigma, judgment and blaming of parents and children with autism were reported. This was attributed to a lack of knowledge about autism among Somali and Eritrean communities in Norway.

Community-based initiatives that engage key stakeholders including civil society organizations, can help to address misconceptions about autism. Furthermore, national and community-owned mass media should produce programs in which individuals with ASD and their families share their experiences and struggles and health professionals provide accurate information about the disorder while promoting inclusion and acceptance.