Immigrant Families’ Perception of the Causes, First Manifestations, and Treatment of Autism Spectrum Disorder

Abstract

Compared to families from their host country, families from immigrant backgrounds who have a child with autism spectrum disorder (ASD) tend to experience greater difficulties in accessing, using, and complying with intervention services for their child. This disparity may be partially accounted for by cultural differences in how families perceive the causes and symptoms of ASD as well as their treatment priorities. The present study sought to document these perceptions in immigrant families living in a Canadian city. Forty-five parents from Latin America, Africa, Western and Eastern Europe, the Caribbean, East Asia, and the Middle East participated in a semi-structured interview. These data were examined qualitatively through thematic analysis to first document all parents' perceptions, then to contrast mothers' and fathers' responses, and finally to examine common themes as a function of country of origin. The most frequently mentioned causes of ASD were environmental factors such as vaccines and diet. Moreover, some participants did not know the cause of their child's ASD. The majority of parents cited the absence of speech as one of the first symptoms noted in their child. Priorities for intervention varied: mothers tended to prioritize speech therapy, whereas fathers favored support in school. Taken as a whole, these findings highlight the need to implement informational programs for these families.

Culturally diverse families of young children with ASD in Sweden: Parental explanatory models

“…On the other hand, the results suggest that other factors might also affect parents' prompt recognition of their child's atypical behavior indicative of ASD. For instance, the results point to gender differences in appraisal of the child's ASD symptoms, which is consistent with previous research with immigrant families in the multicultural contexts of Canada and the USA [25,84]. As our findings show, in some families from an immigrant background, mothers detected possible developmental problems in their children and applied various strategies to understand atypical behavior, while some fathers expressed denial or anger and were less accepting of their children's condition, despite being aware of autism or residing in Sweden for a long time.…”

“…To date, evidence from genetic studies on autism, including twin and family studies, shows that genetic factors can contribute to the development of ASD [89], and that ASD can overlap with other neurodevelopmental disorders sharing risk genes, resulting in the manifestation of signs and symptoms of autism in such syndromes as tuberous sclerosis, fragile X syndrome, and Rett syndrome [90]. The results demonstrate that almost half of the families (n = 7) could not say with certainty what exactly had caused autism in their children, which is consistent with the findings of a recent Canadian study conducted with immigrant families [25]. However, the results revealed that the majority of parents provided multiple explanations for their child's autism, which supports findings from previous studies [10,24,28].…”

“…In ASD research, Kleinman’s conceptual framework has been widely applied in several studies in various cultural contexts, e.g. Australia [ 24 ], Canada [ 25 , 26 ], India [ 27 , 28 ], Kenya [ 29 ], and Taiwan [ 10 ]. To the best of our knowledge, the present study is the first in Sweden that uses Kleinman’s framework to investigate explanatory models of autism held by families of children with ASD from culturally and ethnically diverse backgrounds.…”

Autism Spectrum and Other Neurodevelopmental Disorders in Children of Immigrants: A Brief Review of Current Evidence and Implications for Clinical Practice

“…There is also a scarcity of studies on the experiences of immigrant families with children with neurodevelopmental disorders in the healthcare system, and, to our knowledge, there is currently no systematic review available summarizing what is currently known about these families' interactions with providers or the utility of existing interventions. Nevertheless, the limited available evidence suggests that many barriers to detection, health care access, and treatment retention are similar across neurodevelopmental disorders and include structural/socioeconomic factors, such as underinsurance and service fragmentation, as well as social/cultural factors, such as lack of social support from the same-ethnic community and insufficient availability of culturally appropriate care (9,10,116,(118)(119)(120)(121)(122)(123)(124)(125)(126).…”

“…Potential barriers to diagnosis, access to and retention in specialized care reported in studies conducted among immigrants are similar across disorders and include both structural/socioeconomic factors (e.g., financial barriers, underinsurance, problems with transportation, fragmented services, and language barriers) and social/cultural factors (e.g., lack of social support, stigma and discrimination, insufficient understanding of the host country's health system, low health literacy, and differences in values and expectations between health service providers and parents) (9,10,116,(118)(119)(120)(121)(122)(123)(124)(125)(126).…”