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, the behavioral, and the sensory. 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 lived, neurodiverse social phenomenon. However, despite this conceptual expansion, the current 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 include experiences of minority/marginalized autistic individuals and autism families living in relatively low-income, resource-deficit areas. This dissertation contributes towards addressing this gap in the literature by focusing on the perspectives and experiences of Puerto Rican autism families attempting 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) were 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 the Puerto Rican autism family experience, 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 lived 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 will lead to 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.
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