Autism in a Korean American Evangelical Community
Objectives: We wanted to generate themes in understanding the following: 1) explanations of ASD in spiritual communities that may encompass processes beyond material disease; 2) the immediate moral context in which the concrete experience of ASD plays out and is acknowledged, appropriated, and analyzed; 3) whether attitudes toward ASD differ from depression and, if so, in what ways and why; and 4) whether greater cultural assimilation may lead to differences in perceptions of ASD.
Methods: A mixed-methods approach was used combining participant observation, textual analysis, semi-structured interviews based on Arthur Kleinman’s Explanatory Model, adapted Perceived Devaluation Discrimination Scale (PDDS), and narratives. The lead author conducted ethnographic work from May 2015 to May 2016 in a predominantly Korean-American, English-speaking, evangelical, nondenominational congregation. Twenty-eight attendees, including church leaders, children’s ministry leaders, and members of varying commitment levels to the church were interviewed about their perceptions and/or experiences of ASD and/or mental illness. Analysis followed a deductive approach where data were categorized into themes based on existing theories around Kleinman’s “What’s At Stake” framework, based on how one finds meaning and is able to fully participate in a community. Emergent text from themes was generated using ATLAS.ti (qualitative analysis software), and relational themes were then merged.
Results: This exploratory study yielded numerous themes, indicating that social death is based on the degree to which people are able to achieve what matters most in the local context. A diagnosis of ASD was believed to negatively influence marriage prospects, career prospects, and close friendships. Salient spiritual explanations were held regarding depression, but not ASD, where spirituality was mentioned only in the context of finding support and meaning in a diagnosis. While understandings of symptoms varied, most understood ASD to be a genetic condition and did not feel it would stigmatize the entire family. Structural barriers to obtaining care were not cited. Semantic domains surrounding ASD differed from those found in previous studies in Korean-speaking groups.
Conclusions: Cultural, spiritual, and religious processes influence each other to produce experience of ASD. This study has created a framework by which to conduct research in churches as a step in effectively addressing unmet mental health needs, decreasing stigma, and encouraging the use of professional mental health services in Korean-Americans.