Autism in Vietnam: A Three-Part Study to Enhance Understanding of Vietnamese Parents’ Perceptions and Etiological Beliefs about their Children’s Autism Spectrum Disorder

Background: Parents caring for autistic children have myriad demands ranging from initiating diagnostic procedures to selecting and implementing treatments. How parents make sense of the diagnosis of autism spectrum disorder (ASD) may influence their decision-making processes (cognitive processes), their emotional well-being, and their relational well-being. The Illness Perception Questionnaire-Revised for Autism Spectrum Disorder (IPQ-R-ASD) has been adapted and validated to measure parents’ perceptions and causal beliefs about their child’s autism. However, the validation sample was composed of parents living in high-income countries in North America (HICs; the United States and Canada) with individualistic cultural values. Perceptions and aforementioned cognitive, emotional, and relational experiences are also influenced by cultural values practiced by the family system as well. Nevertheless, similar to most autism research, including the IPQ-R-ASD validation study, parents from collectivistic cultures are largely underrepresented. Hence, it is unclear whether the IPQ-R-ASD is a useful instrument for understanding parents’ perceptions of autism from countries with collectivistic cultural values, such as Vietnam. Vietnam is a low-to-middle income country (LMIC) with collectivistic Asian cultural values, and parents in Vietnam may have cognitive representations of their children’s autism that differ from parents from individualistic HICs. Due to the scarcity of autism literature about Vietnam, the current study (a three-part dissertation) explored how autism and its causes are perceived by parents raising autistic children in Vietnam. Purpose: The overarching aim was to provide insight into parents’ autism perceptions and causal beliefs in Vietnam. Each study’s specific purposes were to (1) review the current state of autism research in Vietnam, including parents’ own experiences, autism practices, and governmental policies; (2) examine the psychometric properties of the Vietnamese IPQ-R-ASD for assessing parental autism perceptions; and (3) evaluate patterns and predictors of causal beliefs of autism among Vietnamese parents using the Vietnamese IPQ-R-ASD Cause scale. Methods: For Study 1, a scoping review was conducted using PRISMA guidelines, a critical first step in expanding the international understanding of autism in Vietnam. For Study 2, the translated Vietnamese IPQ-R-ASD was given to Vietnamese parents to analyze measurement invariance across Vietnamese and North American parent groups at the item, scalar, and factor levels. For Study 3, Vietnamese parents’ autism causal beliefs were explored using descriptive and factor analyses. Multivariate analyses of variance and multiple regression analyses were conducted to examine how parent characteristics (e.g., parent’s age) may predict their autism causal beliefs. Results: A scoping review of academic literature on autism in Vietnam revealed that many Vietnamese families of autistic children had a resigned outlook as they experienced a lack of autism-related support across all systems. Despite the challenges identified in the scoping review, included articles also highlighted Vietnamese parents’ self-empowerment, resilience, and innovation in caring for themselves and other parents (i.e., through creating parent support groups, developing parent-led schools to better support their autistic children). With regard to studies 2 and 3, data collected from this international sample (N=339 of Vietnamese parents) indicated that the translated, culturally adapted, and validated Vietnamese IPQ-R-ASD can be used meaningfully with Vietnamese parents in Vietnam. However, it must be interpreted within the sociocultural context of Vietnam and with reference to Vietnamese norms. Conclusion: This three-study dissertation offers previously unavailable information by not only showing the challenging situation of raising children with autism in Vietnam, but also the incredible resilience of Vietnamese families, even in the face of stigma and sparse resources in Vietnam. It also reveals the importance of cultural considerations when analyzing data from a standard measure given to cross-cultural populations, including developing cultural-specific norms for interpretation.