The ‘Western’ Disease: Assisting Families in the Somali Diaspora Impacted by Autism

Sirad Shirdon

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Talk to a Somali-American anywhere in the US. Chances are high that they know of a child and/or children who are on the Autism Spectrum.  Many Somali mothers have been impacted by a diagnosis, which is unfamiliar to many in the community, and have struggled in accessing resources, in large part due to linguistic and cultural barriers. How can we better support Somali parents in their care for their children with Autism?

In the last few years, there have been several news reports concerning elevated levels of Somali children with Autism, in Minneapolis, Minnesota. In 2008, Idil Abdul, a mother of a child with Autism, expressed her concerns at increased rates of Autism amongst Somali children in Minnesota. This set off a chain of reports looking into prevalence rates of Autism amongst Somali children in Minnesota, which culminated with a 2013 report which found that 1 in 32 Somali children aged 7-9 years in 2010 were identified as having Autism in Minneapolis. The study also found that the average age of diagnosis was age 5, and that Somali children were more likely to have an intellectual disability, than children from other ethnic groups (Hewitt et al., 2013).   Increased numbers of Somali children with Autism have also been reported in Sweden (see Barnevik-Olsen, Gillburg, & Fernell, 2008). 

In Somali communities throughout the diaspora, Autism is referred to as the ‘Western disease’; many Somalis argue that Autism did not exist in Somalia. Due to a constellation of factors including limited English skills, cultural miscommunication between professionals and families, and a lack of knowledge about Autism and services out there, a diagnosis of Autism for Somali parents can be quite an isolating, and terrifying experience. In a recent study on the experiences of Somali-Canadian mothers of children with Autism, parents expressed that language and cultural barriers impeded them from developing relationships with professionals (Kediye, 2007). These factors coupled with a lack of cultural sensitivity from professionals, left parents feeling helpless. Families also stated humiliation when in public with their children, including stares from strangers and unsolicited advice from strangers (Kediye, 2007). For some families the stress can be overwhelming to the point where it’s easier to seclude themselves and remain at home with their children. This is a painful reality; in my own practice, for every family I work with, there are five more who remain at home with their child due to fear of stigmatization and stress from navigating our complex healthcare system. 

From the professional side, there is a lack of understanding of Somali culture and challenges faced by Somali families impacted by Autism. This can at times lead to actions, which may be misinterpreted as culturally insensitive. From the side of Somali families, there is: (1) a lack of knowledge about Autism,  (2) about services available and how to access them, and (2) access issues; due to several constraints (e.g., lack of transportation, lack of childcare) many families are unable to make it to clinic appointments. There is an urgent need to better understand the needs of the Somali community, and follow that up with culturally relevant diagnostic and intervention measures.

What can clinicians, teachers, activists and others who are interested in assisting the Somali community do? Here are some tangible ways you can assist Somali families in accessing quality care for children with Autism.

  • If you reside in Minneapolis, Columbus and other cities with large Somali populations, make an effort to get to know the community!
  • Hospitals and schools can encourage the formation of Somali parental support groups for families impacted by Autism. There is no better ally in the quest to educate parents about Autism, than Somali parents themselves. Parent groups provide a safe space for parents to discuss their experiences and ask other parents for advice on accessing services.
  • Partner with local Somali organizations and parents of children with Autism and venture into communities to hold informational events on Autism and developmental disability in general. Informational events are crucial for destigmatizing disability and educating the community about Autism.
  • When providing information or developing educational materials, convey information orally when possible (e.g., in person, on phone, video, audio etc.). Just because medical literature is translated into Somali does not mean it will be understood. In the event that written material has to be used, simplify language as much as possible.
  • Consider the important role of home health care agencies in addressing the issue of access. Our community has a rich abundance of Somali run home healthcare agencies. By pairing a health professional with a Somali healthcare aide, LPN etc., reticent parents maybe more open to receiving services for their child.
  • Hospitals and schools should be active in holding informational sessions for their staff on Somali culture.
  • More attention should be paid to improving training programs for Somali translators. At times some translators do not have a full understanding for what Autism is, which negatively impacts their ability to educate families. Good quality translator training programs should not only educate translators on medical terminology associated with a diagnosis of Autism, but encourage translators to adapt the information for a Somali audience.
  • Researchers can develop studies which assess Somali perceptions on disabilities, thus providing a foundation for the development of culturally competent assessment and intervention measures.
  • Refugee families with children with Autism can be linked up with leadership programs, which train individuals with disabilities and/or families of the disabled on advocacy. Such programs educate participants on everything from the importance of social workers to lobbying for improved disability legislation.

This brief post is a stepping stone, and hopefully will result in further research, on the provision of culturally competence diagnostic and treatment measures to fit the needs of Somali immigrants, refugees and their children in the US and beyond.

References

Barnevik-Olsen,M.,  Gillburg, C., & Fernell,E. ( 2008). Prevalence of autism in children born to Somali parents living in Sweden: a brief report. Developmental Medicine & Child Neurology, 50(8), pp.598-601

Kediye, F. (2007). Stress factors and child-rearing practices in Somali-Canadian  mothers of young children diagnosed with Autism Spectrum disorder. (Unpublished masters thesis). Ryerson University, Toronto, Canada.

University of Minnesota, Institute of Community Integration. (2013). Minneapolis Somali Autism Spectrum Disorder Prevalence Project. Minneapolis, MN: Hewitt et al.

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