Filipino American Parental Beliefs and Perceptions about Managing Care for Children and Adults with Autism Spectrum Disorder

Abstract

Autism spectrum disorder (ASD) is a developmental disability that affects 1 in 54 children in the United States. This developmental disability impacts an individual’s behavior, communication patterns, and social interactions. ASD strikes 17.9 per 1,000 Asian American and Pacific Islander children in the United States. A dearth of knowledge exists about ASD within the Filipino American community. Shame and stigma related to ASD negatively affect how Filipino Americans perceive the developmental disability, and contribute to underreporting and delayed intervention.Grounded theory was utilized to explore Filipino American cultural beliefs and perceptions about ASD, describe how Filipino American parents manage care for children and adults with ASD, and generate an explanatory framework about processes involved in Filipino American parental management of care for children and adults with ASD. Social constructionism was used as a theoretical framework and symbolic interactionism was used as a philosophical underpinning.Research participants partook in a personal interview to capture cultural beliefs and perceptions about ASD using Kleinman’s Explanatory Model of Illness and explore parental management of children and adults with ASD. Demographic information and levels of acculturation and parent adjustment to illness were also collected. Coding processes, memos, reflexive journals, diagrams, and field notes were utilized for data analysis.Eighteen participants enrolled in the research study. Traditional Filipino cultural values and generational differences influenced beliefs and perceptions about ASD. Causal beliefs of ASD were attributed to environmental factors, medical conditions, pharmaceutical products, prenatal events, genetic history, and/or superstitious beliefs. Management of ASD involved recognizing signs and symptoms of ASD, seeking help, learning about ASD, organizing daily schedules, integrating into social settings, de-escalating challenging behavior, incorporating self-care, worrying about the future, navigating cultural awareness, accepting the diagnosis, defining parenting role, and being an advocate.Filipino American cultural beliefs and perceptions influence how ASD is understood, perceived, and managed. Integration of culturally tailored screening tools, educational programs, and interventions are essential to ensure that nurses provide comprehensive, holistic care for Filipino Americans with ASD. Raising awareness about ASD in the Filipino American community is necessary to further understand the developmental disability, which has no cure, throughout the lifespan

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