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Dissertation Defense, Melissa Anderson-Chavarria, “Forgotten Families of the Sea and the Sun: An ethnography of autism in Puerto Rico”
April 27 @ 1:00 pm
Forgotten Families of the Sea and the Sun: An ethnography of autism in Puerto Rico
Abstract: “In biomedical terms, Autism Spectrum Disorder (ASD) is considered a neurodevelopmental disorder impacting several core areas of an individual’s development including the socio-communicative, behavioral, and sensory arenas. A broader conceptualization of autism has emerged, spurred in large part by the contemporary Neurodiversity Movement, expanding our considerations of autism beyond the biomedical towards an understanding of autism as a neurodiverse, socially informed phenomenon. However, despite this conceptual expansion, other core foci of the autism literature remain narrow. Contemporary autism literature continues to be disproportionately dominated by the small subset of autistic lived experiences of majority White North American and European autistic individuals and families living in high-income, resource-rich settings. Therefore, there is a need for a diversification of autism studies to ensure that the experiences of minority/marginalized autistic individuals and autism families living in relatively low-income, resource-deficit areas are represented. This dissertation contributes towards addressing this gap in the literature by focusing on the perspectives and experiences of Puerto Rican autism families, the forgotten families of the sea and the sun, as they attempt to navigate the island nation’s challenging medical and educational infrastructure to access scarce, but much-needed resources and services for their autistic children.
This dissertation presents findings from ethnographic research conducted from 2017 to 2019 examining the autism community of Puerto Rico. Data collection consisted of over 350 hours of participant-observation conducted at autism-related settings such as health care facilities, educational institutions, non-profit organizations, and autism family homes; and 73 semi-structured interviews (67 primary, 6 follow-up) conducted between two cohorts: 1) parents of autistic children (n=35) and 2) autism treatment/care providers (n=32). Analysis of this data sheds light on various aspects of Puerto Rican autism family experiences, including conceptualizations of autism, theories of causation and their impact on parental vaccination decision-making, language practices and ideologies, and family resource navigation. By exploring each of these individual aspects, this study elucidates how the holistic experience of the Puerto Rican autism family extends far beyond strictly biomedical delineations of an autism diagnosis. Rather, this dissertation argues that the reality of the autism family experience is fundamentally informed by the historical, politico-economic, sociocultural, and structural contexts in which it is lived. Furthermore, this study demonstrates the importance of including a diversity of autism family experiences, especially those in low-income, resource-deficit settings, within the autism literature. It is hoped that this ethnography of autism in Puerto Rico provides novel perspectives that may contribute towards the development of appropriate autism screening, diagnostic, treatment/interventional, and family support protocols that are applicable and accessible not only to those autism families that have the most access and representation, but also to those who may have the least.”
This dissertation defense will be held via Zoom. If you would like to participate in the defense, please contact Melissa Anderson-Chavarria at firstname.lastname@example.org for video meeting details.