Academic journal article International Journal of Child and Adolescent Health

Elements of Culture and Tradition That Shape the Perceptions and Expectations of Somali Refugee Mothers about Autism

Academic journal article International Journal of Child and Adolescent Health

Elements of Culture and Tradition That Shape the Perceptions and Expectations of Somali Refugee Mothers about Autism

Article excerpt


In recent years, research has found that children from non-English speaking families are more likely to receive a late diagnosis than children from English speaking families. With the increased number of diagnoses of autism spectrum disorder (ASD) among American born Somali children it is important to understand what affects this is having on the community and what if anything can be done. There are a number of different barriers that immigrants and refugees face upon arrival into a new country, primary among them is access to healthcare (1). Numerous studies have examined the effects of raising children with ASD in many other communities, researchers have concluded that raising children in a new cultural setting presents greater challenges in and of itself but as immigrants with the absence of kinship and familial networks, it is far more difficult (2).

According to the Centers for Disease Control and Prevention - National Center for Birth Defects and Developmental Disabilities, (CDC-NCBDDD) ASD is defined as a group of disorders that affect social, communication and behavioral skills (3). When autism was first diagnosed and named early infantile autism over 70 years ago it was suspected to be specific to a particular community. In fact, when Leo Kanner (1896-1981) first developed his theory regarding autism, "refrigerator mothers" he asserted that it was more likely to be found among educated families who exhibited extremely dysfunctional mother-child relations (4). The term refrigerator mothers referred to the mother's inability to provide a warm and welcoming environment for the children.

Since then, millions of children have been diagnosed and countless studies have been done not only to fully understand the best ways to manage the disorder but that ASD does not target any specific socioeconomic status. A recent study by the CDC-NCBDDD found that this disorder occurs in 1 in about 68 children and seems to be on the rise worldwide (5). While a cure has not yet been found, medical professionals recommend that children diagnosed be treated as early as possible in order to minimize or reduce the clinical symptoms. However, like so many other medical inequalities, minorities diagnosed with autism receive treatment in far fewer numbers than do their peers of other racial groups (6).

This notion is confirmed by countless studies that have found that minority children access medical services less often than their peers even though their rate of diagnosis is just as high (7). In one study conducted in Minnesota the findings have shown that American born Somali children diagnosed with ASD has drastically increased (8). What many of these studies have also found is that both culture and tradition play an important role in late diagnosis and failure to seek follow-up care. It has long since been acknowledged that culture plays an important role in diagnosis and treatment (9).

The purpose of this study was to examine what aspects of culture and tradition shape the perceptions and expectations of Somali mothers with children with autism. In an effort to break the cycle of health disparities among this population addressing compound risk factors, personal characteristics, health risk factors, environmental characteristics and environmental risk factors.


This was a three phase ethnographic case study, that consisted of two focus groups, participatory observations during a summer camp and program meetings and finally, face-to-face interviews with all adult participants. Participants were selected from the Parent as Teachers (PAT) program hosted by Refugee Family Assistance Program (RFAP). Mother's (Appendix A and Table 1) profiles were reviewed to ensure that participants lived within the Atlanta metropolitan area, mothers were born in Somali and that their children were born in the United States and had received a diagnosis of ASD from a developmental pediatrician and licensed psychologist. …

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