FORGOTTEN FAMILIES OF THE SEA AND THE SUN: AN ETHNOGRAPHY OF AUTISM IN PUERTO RICO By Melissa Anderson-Chavarria A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of Anthropology- Doctor of Philosophy 2021 ABSTRACT FORGOTTEN FAMILIES OF THE SEA AND THE SUN: AN ETHNOGRAPHY OF AUTISM IN PUERTO RICO By Melissa Anderson-Chavarria 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. Copyright by MELISSA ANDERSON-CHAVARRIA 2021 En honor de mi abuela, Rosa Nilda Crespo Cardona Mi querida Nananí quien me dice que estoy viviendo su sueño una erudita nacida demasiado pronto como las raíces del gran árbol Ceiba gracias a usted puedo crecer alto In honor of my grandmother, Rosa Nilda Crespo Cardona My dear Nanani who tells me I am living her dream a scholar born too soon like the roots of the great Ceiba tree it is because of you that I may grow tall v ACKNOWLEDGEMENTS First and foremost, I would like to thank the autism community of Puerto Rico. Thank you to the autism families (the true autism experts) and autism treatment/care providers who participated in this study. You all welcomed me with open arms, unwavering kindness, and more often than not a fresh cup of café con leche. I feel truly honored to have had the opportunity to listen to your voices, stories, and experiences and I hope I have done them justice. Thank you to the four awe-inspiring women of my doctoral committee. It is without an ounce of hyperbole when I say that this dissertation would not have been possible without the vast anthropological expertise, guidance, and support of my advisor and mentor, Dr. Linda M. Hunt. From answering frantic phone calls from the field to making sure this dissertation was completed even amidst a global pandemic, I thank you from the bottom of my heart. Thank you, Dr. Heather Howard, for your invaluable constructive feedback and always spot-on reading recommendations. This dissertation has been greatly improved by the wealth of your medical anthropological knowledge. Thank you, Dr. Chantal Tetreault, for your insightful comments and critiques especially for the linguistic anthropological components of this work. My final analysis is much richer as a result. Thank you, Dr. Jane Turner, for your essential contributions as a clinical autism expert. I aspire to one day follow your excellent example as not only a clinical provider, but also as a staunch advocate serving my community. And thank you, Dr. Mindy Morgan and Joan Reid in the Department of Anthropology, for your expertise and organization in navigating the logistics of completing this doctoral program. Thank you to Dr. Brian Schutte, Michelle Volker, Dr. Justin McCormick, Bethany Heinlen, and the DO-PhD program at Michigan State University College of Osteopathic vi Medicine for supporting me and the social sciences in medicine. I am very grateful to have had the opportunity to become a Spartan. Thank you to the Norman Kagan Endowment for Graduate and Professional Studies, the Center for Latin American and Caribbean Studies Graduate Student Research Grant, and the College of Social Science’s Dissertation Completion Fellowship for funding this research. Thank you to my family and friends. Thank you Linnette Gonzalez (Mom) and Veronica Chavarria (big sis) for your love and support. We have been to the moon and back together, and this dissertation is a product of that journey. Thank you to my grandparents, Nanani and Papapi, for their love, hospitality, and example of grace and strength. Thank you to my friends for our hikes, dog park visits, and skating sessions that remind me that it is okay to take a break once in a while. And lastly, thank you to my wife Lily Anne Anderson-Chavarria. One might argue that dreams are the ultimate liminal state. Dreams are our passageways between dimensions of consciousness in which we are temporarily suspended between Here and There. Before you, each night I feared that place called There, always unnerved by where the passageways would lead. And now, I rest easy knowing that whatever winding turns that may take me There—it will be okay because they will always lead me to you. See you in my dreams, my love. vii TABLE OF CONTENTS LIST OF TABLES……………………………………………………………………………….xii LIST OF FIGURES……………………………………………………………………………..xiii KEY TO ABBREVIATIONS…………………………………………………………………...xiv La Borinqueña, the National Anthem of Puerto Rico…………………………………………..…1 INTRODUCTION…………………………………………………………………...……………2 Chapter Summaries………………………………………………………………………..8 CHAPTER 2: Autism Beyond the Biomedical…………………………………………………..13 Historical Origins and Contemporary Models of Autism………………………………..17 A Brief History of Autism………………………………………………………...17 The Medicalization of Autism……………………………………………………19 Neurodiversity: Autism reconsidered……………………………………………22 Autism and Parenthood……………………………………………………………….….26 Autism Around the World……………………………………………………………….28 Health Disparities in Autism……………………………………………………..28 The Global Autism Community: A marginalized majority………………………29 Conclusion………………………………………………………………………………31 CHAPTER 3: An Enchanted Island? The History of and Contemporary Challenges to Puerto Rican Health Care Systems………………………………………………………………………33 Native of Nowhere……………………………………………………………………….34 A Brief History of Puerto Rico and Early Puerto Rican Health Care Systems..………...35 Puerto Rican Health Care Systems Today……………………………………………….39 Empty Promises: PROMESA and the national debt crisis………………………40 The Unforeseen Consequences of La Reforma..…………………………………42 The Diaspora of the Puerto Rican Health Care Professional..………………….44 Maria: The hurricane that broke the camel’s back………………………………………47 Conclusion…………………………………………………………….…………………50 CHAPTER 4: Settings and Methods…………………………………………………………….52 Settings……………………………..…………………………………………………….54 Unit of Analysis: The autism family.……..……………………….……………………57 Methods……………………………………..……………………………………………59 Participant-Observation…...…………………………………………………….59 Sampling and Recruitment…………………….…………………………………62 Interviewing…….………………………………………………………………..64 Data Analysis…………………………………………………………………….………68 viii CHAPTER 5: ‘Nos Tocó’: Autism Conceptualization, Metaphor, and Empowered Fatalismo..…........………………………………………………………………………….…...70 Autism Conceptualization and the Role of Metaphor……………………..…………….72 Metaphor and Disease Conceptualization…………………….…………………72 Parental Autism Conceptualization……...………………………………………74 Provider Autism Conceptualization……………..……………………………….76 Dual Autism Conceptualization by Parent-Providers……………...……………80 To Know and To Understand…….………………………………………………82 Nos Tocó: Autism conceptualization and empowered fatalismo…..…………………84 Defining ‘Fatalismo’ in Health Care…….………………………………………84 Nos Tocó: Parental perspectives…..…………………………………………….86 Empowered Fatalismo…………………...………………………………………88 Conclusion………………………………………….……………………………………90 CHAPTER 6: Searching for the ‘Trigger’: Autism Causation Theory and Parental Vaccination Decision-Making……...…………………………………………………………………….……93 Field Note Entry, May 18, 2017…………………………………………………………94 Multifactorial Autism Causation Theory……...…………………………………………96 Searching for the ‘Trigger’…..…………………………………………………………100 Vaccines as ‘Trigger’……...……………………………………………………………102 ‘They Act Like It’s Holy Water’: Parental perspectives on vaccination decision- making…………………………………………………………………………………..107 Provider Perspectives on Parental Vaccination Decision-Making……..………………111 Future Directions……………………….………………………………………………114 Conclusion………………………………………………...……………………………115 CHAPTER 7: The ‘Little American’ Phenomenon: Dynamics of English Language Preference and English-Spanish Language Ideologies……………………………………………………..118 Field Note Entry, May 25, 2017………………………………………………………119 ‘They Don’t Sound Puerto Rican’: Perceptions of autistic language in Puerto Rico…..122 ‘He’s a Complete American!’: The reported English language preference of Puerto Rican autistic children………………………………….………………………126 English is ‘easier’ than Spanish…..……………………………………………130 The Role of Technology and Media…….………………………………………131 Provider Recommendations Regarding Language Use…………...……………………133 English-Spanish Language Ideologies in Puerto Rico………….………………………138 Potential Implications of the ‘Little American’ Phenomenon………….………………143 Autism Family Dynamics……………………………….………………………144 Social Marginalization………………….………………………………………145 Availability of and Access to Linguistically Appropriate Autism Resources……148 Future Directions…………………………….…………………………………………150 Conclusion…………………………...…………………………………………………151 CHAPTER 8: ‘Fight for Your Child’s Rights’: Autism Resource Navigation in Puerto Rico…..........................................................................................................................................153 ix Autism Resource Access: Issues of cost, care, and coverage……………………..……156 When the Care Just Isn’t There: Issues of autism resource availability….……….……161 ‘Fight for Your Child’s Rights’: The Department of Education and Remedio Provisional……………………………………………………………….166 ‘When He Howls, I Howl with Him’: Stigma experiences…………………………….169 The Role of Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) Activities…………...………………………………………………………173 Parental Perspectives on the Impact of CRAAFT Activities……………………174 Cost and Critiques of CRAAFT Activities………………………………………177 Parental Support at CRAAFT Activities……………..…………………………179 ‘What Will Happen When I Am Gone?’: The forgotten autistic adult…………………183 Conclusion…………………………………..…………………………………………188 CHAPTER 9: Conclusion: Witnessing the Puerto Rican Autism Family……….……………191 Autism in Context: Voices from Puerto Rico………………………..…………………195 The Enduring Colonial Legacy of Puerto Rico…………………………………196 A Nation in Crisis………………………………………………………………197 Sociocultural Implications of being ‘Boricua y Autista’……….………………199 Critical Medical Anthropology and Critical Autism Studies: A symbiotic partnership..201 Witnessing the Puerto Rican Autism Family: A need for public policy change…….…203 APPENDICES………………………..………………………………………………………209 APPENDIX A: TRANSCRIPTION KEY……………………………..……………….210 APPENDIX B: INTERVIEW TEMPLATES…………...…………………...…………211 REFERENCES…………………………………………………………………………………221 x LIST OF TABLES Table 1: Selected Characteristics of 35 Parents Interviewed………………………...…………..66 Table 2: Selected Characteristics of 39 Autistic Children of Parents Interviewed………………67 Table 3: Selected Characteristics of 32 Autism Treatment/Care Providers Interviewed……..…67 Table 4: Perspectives of 35 Parents Interviewed on the Role of Vaccines in Autism Causation…………………………………………………………………….………103 Table 5: Languages(s) Used in the Home as Reported by 35 Parents Interviewed…….………129 Table 6: Reported Language(s) Use of 39 Autistic Children by Parents Interviewed……….…129 xi LIST OF FIGURES Figure 1: SPARK Foundation Homepage Advertising Autism Family Participation in Genetic Studies…………………………………………………………………………………21 Figure 2: Map of Puerto Rico……………………………………………………………………36 Figure 3: ‘No to the Dictatorship of Fiscal Control’…………………...……………..…….……42 Figure 4: Location and Power Status of Hospitals and Medical Facilities in Puerto Rico………46 Figure 5: House with a Blue Tarp Serving as a Makeshift Roof……………...…………………50 Figure 6: Autism Center …………………………………………………………………………55 Figure 7: Surf Therapy……...……………………………………………………………………56 Figure 8: Mothers at Candlelight Vigil……..……………………………………………………61 Figure 9: Interviewed Subjects by Healthcare Region…….……….……………………………63 Figure 10: View from Lourdes’ Porch………………………………...…………………………94 Figure 11: Parents Watching Surf Therapy Session……………………………………………119 Figure 12: Example of Picture-Exchange Communication Systems…………………...………124 Figure 13: A Typical Day Seeking Autism Services for a Rural Puerto Rican Autism Family..161 Figure 14: Fundación Golitos Adaptive Soccer Program………………………………………176 Figure 15: Horses Awaiting their Riders, West Coast Equine Therapy…...……...……………177 Figure 16: National Protest, July 22, 2019……………………………..………………………207 xii KEY TO ABBREVIATIONS AAC: Augmentative and Alternative Communication ABA: Applied Behavioral Analysis ADHD: Attention Deficit Hyperactivity Disorder APA: American Psychological Association ASD: Autism Spectrum Disorder ASHA: American Speech-Language and Hearing Association BCBA: Board-Certified Behavioral Analyst CAS: Critical Autism Studies CDC: Center for Disease Control CMA: Critical Medical Anthropology CRAAFT: Community-based Recreational/Alternative Autism Family Therapeutic DO: Doctor of Osteopathic Medicine DSM: Diagnostic and Statistical Manual FEMA: Federal Emergency Management Agency HMO: Health Maintenance Organization HPV: Human Papillomavirus IEP: Individualized Education Plan LMIC: Low to Middle Income Country METAA: Entrepreneurship and Employment Mission for Adolescents and Adults with Autism MMR: Measles, Mumps, and Rubella NT: Neurotypical xiii PDD-NOS: Pervasive Developmental Disorder-Not Otherwise Specified PECS: Picture-Exchange Communication System PROMESA: Puerto Rico Oversight, Management, and Economic Stability Act PTSD: Post-Traumatic Stress Disorder SNP: Single-Nucleotide Polymorphism xiv La Borinqueña, the National Anthem of Puerto Rico La tierra de Borinquén donde he nacido yo es un jardín florido de mágico primor. Un cielo siempre nítido le sirve de dosel y dan arrullos plácidos las olas a sus pies. Cuando a sus playas llegó Colón exclamó, lleno de admiración: ¡Oh!, ¡oh!, ¡oh!, Esta es la linda tierra que busco yo; Es Borínquen la hija, la hija del mar y el sol. The land of Borinquén where I was born is a flowery garden of magical beauty. A constantly clear sky serves as its canopy. And placid lullabies are sung by the waves at its feet. When at her beaches Columbus arrived he exclaimed full of admiration Oh! Oh! Oh! This is the beautiful land that I seek. Borínquen is the daughter, the daughter of the sea and the sun. 1 INTRODUCTION 2 Autism is often represented in our society by a picture of a lone puzzle piece. From bumper stickers to the logo of a major academic journal, this symbol has become emblematic of this ‘puzzling’ neurodevelopmental disorder. The symbol of the autism puzzle piece has been the subject of critique, particularly from the autistic self-advocate community, who take issue with the negative connotations of autism as a ‘puzzle to be solved’ (Gernsbacher et al 2018). I too disagree with this perception of autism, and in particular the perception of the autistic individual and the autism family, as an orphaned piece of an arbitrary puzzle. The conceptualization of autism as a ‘mystery’ to be solved is conducive to an examination of autism that seeks to answer questions that are asked from a perspective that assumes pathology—seeking answers in unwinding the helices of genetic materials or via the picking up of the proverbial breadcrumb trail of clinical presentation. While these hypotheses are often laudable in their pursuit to harness previously unimaginable scientific technology and innovation to enhance the quality of life for the millions of individuals experiencing neurological disability and/or difference, it is important that we remember—they are not the only important questions to be asked. The perception of autism as a lone puzzle piece encourages foregrounding the biological while potentially neglecting a broader context. This is an issue of magnification rather than one of error. When our research investigations are dominated by a ‘zooming in’ on autism’s molecular mysteries or the Rubik’s cube of the autistic child’s symptomatology or atypical behavior, we risk missing the bigger picture. Contemporary autism researchers have called attention to the compounding problematic skewing of perception that persists within the current broader autism literature—a nearly singular emphasis on autism as experienced by majority White North American and European autistic individuals and autism families living in high-income, resource-rich communities. Critics 3 increasingly call for a greater consideration of the diversity of autism experiences, especially those in low-income, resource-deficit minority and/or marginalized global autism communities (De Vries 2016, Elsabbagh et al 2012, Durkin et al 2015). In this dissertation, I seek to contribute towards addressing this gap by illuminating the experiences, perspectives, and voices of autism families forgotten by the dominant literature. I focus on the Puerto Rican autism community and the experiences of the autism families living in the relatively low-income, resource-deficit environment of Puerto Rico. Through the use of an ethnographic approach, I endeavor to demonstrate that by adjusting our magnification in our view of the autism ‘puzzle piece’ to incorporate a broader range of autistic experiences as both biomedical disorder and socially lived phenomenon, the lone puzzle piece disappears into an appreciation of the complex mosaic of neurodiverse experience that is the global autism community. Each individual piece—each autistic individual, autism family, autism community—is uniquely shaped by the local cultural and structural forces in which the autistic experience is lived yet remain bound together by the core commonalities inherent to living neurodiversity in a neurotypical social world. A critical medical anthropology (CMA) approach is perhaps ideal for capturing the rugged nuances of the global autism mosaic. CMA has been defined by Merrill Singer as: "…a theoretical and practical effort to understand and respond to issues and problems of health, illness, and treatment in terms of the interaction between the macrolevel of political economy, the national level of political and class structure, the institutional level of the health care system, the community level of popular and folk beliefs and actions, the micro level of illness experience, behavior, and meaning, human physiology, and environmental factors" (Singer 1995:81). Through my ethnographic examination and analysis of the experiences and perspectives of Puerto Rican autism families, I highlight how these many types of interactions crisscross 4 between the historical and the contemporary, between questions of politics and class, and between the bounds of social normativity to shape the Puerto Rican autistic experience. Puerto Rican autism families exist on the margins and have nearly been forgotten there by their government, their society, and the broader neurotypical world. In this dissertation, I describe how autism families, grappling with challenging circumstances, rely on their impressive resilience and creativity to function and survive as a marginalized community within a marginalized country. I examine the experience of Puerto Rican autism families and supplement this examination with the perspectives of autism treatment/care providers like teachers, clinicians, and therapists to further elucidate the autism family experience from adjacent viewpoints. Throughout this dissertation, I aim to weave together my anthropological analysis of the Puerto Rican autism community by using the stories and voices direct from the community itself. In addition to quotations and excerpts from interviews, I begin several chapters with short vignettes describing my interactions and experiences with autism families during my fieldwork. The families described in this dissertation are given pseudonyms and key details have been changed or blended with other autism families in order to protect anonymity. These stories gathered from across the island will prove critical in our understanding that the Puerto Rican autism family experience is informed by the local historical, structural, and cultural context in which it is lived. Lessons we learn from the Puerto Rican autism community, and how they navigate their own distinct social, politico-economic, and infrastructural terrain, may prove enlightening when examining other autism communities around the world existing in similar situations such as political strife, natural disaster, and financial crisis. Prior to delving into the findings of this research, and while neither irrelevant nor all- important, it may prove useful to understand my positionality as a researcher. As linguistic 5 anthropologist Norma Mendoza-Denton writes, “No ethnographer is a blank notepad just as no linguist is a tape recorder” (2008:48). I conducted this research as part of my requirements to complete my doctoral degree in Anthropology as part of the dual-degree Doctor of Osteopathic Medicine (DO), PhD program at Michigan State University, in training to become a physician- anthropologist. This hyphenate merits clarification, as I do not swap out my field notes for my stethoscope depending on my fancy. That hyphenate is permanent, during the course of this study I was at once a physician in training and an anthropologist—simultaneously of both and of distinctly neither. This liminal status may also be appropriately applied to my identity as a first-generation mainland American and ethnic Puerto Rican. The betwixt nature of my cultural identity came up while in field, as Beatriz, mother of a 21-year-old autistic son, remarked to me during our first interview, “People judge beforehand, you know? Over the phone you told me that you are from Michigan doing your dissertation…and I made a mental picture of an anglosajona [Anglo-Saxon woman]. From the way you sounded, I never would have imagined that you would be a Puerto Rican Latin woman like me” (Beatriz, interviewed May 19, 2017). Anthropologist Juliet McMullin discusses her similar experience conducting fieldwork on another island, Hawaii. As someone who is ethnically Hawaiian but raised on the mainland, she notes that the incongruity between her appearance and her behavior/speech led to “…the sense I had of being recategorized from insider to ambiguous subject” (McMullin 2010:66). And while tropes abound of first- generation mainland Puerto Ricans straddling the Caribbean Sea, with ‘one foot on the island and one foot on the mainland’—I disagree with this assessment. I am indelibly and undeniably Gringa [American] and Boricua [Puerto Rican]—I exist in both and at the same time in neither. Furthermore, I found this position to be a very convenient one for the purposes of this study. 6 Before I continue, I must explain my decision, which may be considered ‘controversial’ in some academic and community circles, regarding language when referring to autism. Throughout this dissertation, I elect to utilize identity-first language when referring to autistic individuals (i.e., autistic person) as opposed to person-first language (i.e., person with autism). All researchers within disability studies, regardless of the specific discipline, make a choice that carries inevitable connotations, as “Language forces us to make a preemptive judgement about disability just in order to talk about it” (Leach Scully 2008:35). My stance is best explained by yielding to autism activist and autistic person Jim Sinclair as they phrase their preference for identity-first language poignantly here: “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person…If other people have trouble remembering that autism doesn’t make me any less of a person, then that’s their problem, not mine. Let them find a way to remind themselves that I’m a person, without trying to define an essential part of my personhood as something bad. I am autistic because I accept and value myself the way I am” (Sinclair 2013:2). And so, within this introduction I have identified the gap that exists within the present autism literature, which has disproportionately magnified research representations of the White, high-income, resource-rich autistic experience, and have described how this dissertation intends to address this gap by examining the experience of autism families living in relatively low- income, resource-deficit contexts. If we are to begin our progression from understanding autism as a reductive piece of a puzzle towards an appreciation of the nuanced mosaic of the global autism experience, and thereby further our understanding, treatment, and social inclusion of global autistic individuals and autism families, we are obliged to first explore how local structural and sociocultural factors in communities underrepresented in the literature may significantly shape the autism family experience. I use the experience of Puerto Rican autism families, the forgotten families of the sea and the sun, as an example of my larger argument; that 7 autism, as a developmental disorder and lived social experience, is fundamentally shaped and therefore cannot be holistically understood without first recognizing the local politico-economic, sociocultural, historical, and structural contexts in which it is lived. Chapter Summaries Chapter 2, ‘Autism Beyond the Biomedical’, provides the general autism background knowledge required before focusing on the more specific context of the Puerto Rican autism family experience in later chapters. I give a brief history of autism along with a summary of contemporary understandings of autism as a biomedical, neurodevelopmental disorder and as a manifestation of neurodiversity. I then describe how parenting differs in the context of the autism family as opposed to neurotypical norms, as parents of autistic children carry the additional responsibilities of advocating and interpreting for their neurodiverse children in a social world not built with their needs in mind. I close this chapter with a discussion of the significant autism health disparities that exist on a global scale, noting the increased need for research focusing on autism families in underrepresented low-income, resource-deficit settings. Chapter 3, ‘An Enchanted Island? The History of and Contemporary Challenges to Puerto Rican Health Care Systems’, is my second background chapter and focuses on Puerto Rican health care systems. Beginning with a brief overview of the colonial roots of health care systems on the island and how this colonial legacy has set the stage for the current issues of contemporary Puerto Rican health care, I describe the three main challenges facing health care systems on the island today: 1) the national debt crisis, 2) an inadequate system of managed care, and 3) a dire health care professional shortage. I then discuss how these issues were all significantly exacerbated following the devastation of Hurricane Maria in September 2017. By obtaining this background knowledge, the reader is given context to better understand the 8 situation Puerto Rican autism families are in while attempting to access resources for their autistic children within this struggling health care system. Chapter 4, ‘Settings and Methods’, details how this research was conducted. I use what Peacock terms a ‘harsh light, soft focus’ (Peacock 2001) ethnographic approach, which casts a ‘harsh light’ on the community of interest but keeps the focus soft as to blur the boundaries between individuals, communities, and social/structural institutions. I explain that this work was multi-sited in nature, with field sites such as health care institutions, educational institutions, non-profit organizations, and autism family homes. I adapt Marcus’ ‘follow the people’ approach for ethnography (Marcus 1998) to a ‘follow the autism family’ approach while in field, tagging along with autism families whenever feasible to facilitate as much of what Holmes’ calls an ‘embodied experience’ (Holmes 2013) of autism family life as possible. I then discuss my decision to use the autism family as my unit of analysis, citing a recent push in the literature to consider not only the experiences and outcomes of the autistic individual, but also to consider the autism family as a whole (Karst and Van Hecke 2012, Kuhaneck et al 2015). After an explanation of my principal methodologies of participant-observation and semi-structured interviewing, both cornerstones of the medical anthropological discipline, I close the chapter with details of the demographics of the subjects whom I interviewed and my approach to data analysis. Chapters 5 through 8 are data chapters, each focusing on a specific aspect of the Puerto Rican autism family experience to ultimately work together to elucidate how autism as a developmental disorder and social experience in Puerto Rico is fundamentally shaped by the local cultural and structural contexts of the island. The first of these chapters is Chapter 5, ‘Nos Tocó: Autism Conceptualization, metaphor, and empowered fatalismo’, and explores how autism 9 is conceptualized within the Puerto Rican autism community from the perspectives of parents and providers. In the first section, I describe how each of these cohorts conveyed to me their understandings of autism via the use of metaphorical language, and how these metaphors facilitated a conceptualization of autism that was tailored to the respective roles they played in the lives of their autistic children and patients. In the second section, I examine the role of fatalismo [fatalism], or the idea that fate is predetermined and cannot be changed (Lopez et al 2018), plays in Puerto Rican parental autism conceptualization. I note that recent literature has proposed the notion that fatalismo cultural beliefs may contribute towards the decreased utilization of autism services by Latino families (Mandell and Novak 2005, Blanche et al 2015). However, I argue that my findings suggest the opposite, that Puerto Rican autism families often demonstrate what I term as empowered fatalismo belief, which as described by these parents is not a reflection of Latino’s resignation to the whims of destiny but rather is a symbol of parental empowerment. In Chapter 6, ‘Searching for the ‘Trigger’: Autism causation theory and parental vaccination decision-making’, I turn my attention from the question of ‘What is autism?’ to ‘What may cause autism?’. I examine parental and provider beliefs regarding autism causation, noting how autism is largely considered to be the result of a multifactorial combination of genetic and environmental factors. A common theme that emerged was the notion that certain ‘triggers’ for autism exist and that vaccines may be one of these ‘triggers’. After discussing the divided nature of the autism-vaccine controversy in Puerto Rico, I note how vaccine safety doubts may influence parental vaccination decision-making in this community. I examine provider perspectives on and responses to parental vaccine safety doubt and conclude with a 10 discussion regarding the renewed relevance and importance of examinations of parental vaccination decision-making in autism communities in light of the global COVID-19 pandemic. Chapter 7, ‘The Little American Phenomenon: Dynamics of English language preference and English-Spanish language ideologies’, explores language use and bilingualism within the Puerto Rican autism community. I describe my surprising finding of autistic children on the island commonly being perceived by their parents and providers alike to prefer English despite living in a Spanish-dominant society. When asked what they believe may cause this English language preference within the autism population, two rationales were reported: 1) English is ‘easier’ than Spanish and 2) Autistic children are ‘technologically gifted or inclined’ and English is the ‘language of technology’. I term this finding the ‘Little American Phenomenon’ and contextualize this within a framework of language ideology by exploring how cultural beliefs and societal constructions regarding English and Spanish use on the island may influence linguistic preference within the Puerto Rican autism community. I conclude with a discussion of the potential implications that this perceived English language preference may have on autism family dynamics, socialization and cultural inclusion of autistic individuals, and access to appropriate autism-related treatment and interventions along with suggested future research directions for this topic. Chapter 8, ‘Fight for Your Child’s Rights: Autism resource navigation in Puerto Rico’, is my last data chapter and describes the many substantial challenges Puerto Rican autism families face in their attempts to navigate the complex, struggling Puerto Rican health and educational infrastructure to secure the autism resources and services that their autistic children require. I discuss issues involving the availability of and access to resources on the island, and how these issues prompt many autism families to consider leaving Puerto Rico to pursue potential resources 11 in the United States. I explore how, for many parents of autistic children with whom I spoke, this challenging infrastructure has led to a growing sentiment of having to ‘fight for their child’s rights’ against the State, a fight that often resorts to legal measures. Next, I examine the challenge of societal stigma against autism and neurodiversity within Puerto Rico as parents describe feeling isolated and afraid to enter public spaces with their autistic children for fear of judgement or ridicule. I then describe how the presence of Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) activities may mitigate the toll these various challenges take on Puerto Rican autism families through their provision of a safe space for mutual understanding, empathy, and support. The chapter closes with a discussion of the stories of worry and hopelessness parents of autistic children described to me at the thought of their child’s approaching 21st birthdays and the day they age out of the public system into a society that offers little support for autistic adults (Howlin and Moss 2012, Chen et al 2015). I conclude this dissertation with Chapter 9, ‘Conclusion: Witnessing the Puerto Rican Autism Family’. I begin this chapter with a brief summary of the major points of this dissertation. I then take a step back to consider a few overarching themes within this ethnography of autism in Puerto Rico that act as threads connecting the chapters together. Next, I propose that a symbiotic, underexplored interdisciplinary opportunity for partnership exists between the fields of CMA and Critical Autism Studies (CAS), noting that this dissertation is an example of how these two theoretical approaches complement each other—especially considering their shared goal of putting research into practice to positively contribute to the increased health, happiness, and quality of life for global autism communities. Lastly, I close this dissertation with a discussion of the urgent call for public policy change in Puerto Rico that will address the many as of yet unmet needs of the Puerto Rican autism community. 12 CHAPTER 2: Autism Beyond the Biomedical 13 When Diana first described her son Oscar to me, he sounded like any other Puerto Rican 12-year-old; “He is a brilliant boy” she said, “He does well in school and is very good at speaking English. He is also very good with math and computers; he has a talent for those details.” As the conversation continued, Diana noted that her son, while academically excellent, struggled to make friends. He spent most of his time alone at home with his two brothers. Oscar was also easily overcome by his emotions, sometimes bursting into fits of rages during which he throws his beloved computer tablet against the wall. “People.” Diana said when asked what is challenging for her son; “That is what is hard for Oscar—being around people” (Diana, interviewed May 30, 2017). It was evident from first glance that Alex’s son Alvin was not a typical Puerto Rican 12- year-old boy. “Alvin wakes up at 3 am and will start jumping and flapping his hands in his room. We always have to lock the doors to make sure he doesn’t run away. We also have locks on our kitchen cabinets, which are not real cabinets but office filing drawers that can lock easily. We have a very strange looking kitchen! But if we don’t put all of the cooking oils in there, we will wake up to Alvin dumping all of the oils and detergents and any viscous liquid on the floor. It visually stimulates him; it is a compulsion. His school is a special private one the government pays for—they only agreed to pay after my wife filed a lawsuit. The school is dedicated to working with autistic kids, they are working on these compulsions with him. We also make sure to lock the windows, Alvin has climbed onto the roof many times—we will hear his little feet running across the roof and my wife and I rush to see where he is. One time, Alvin jumped off the roof and scared us to death. Thank God he was okay. He doesn’t talk the way we do, he is not verbal, but he seemed okay so we did not go to the hospital” (Alex, interviewed May 29, 2017). 14 While Oscar and Alvin are two very different boys living in Puerto Rico, they have two very important things in common. First, both of these boys were diagnosed with autism at 2.5 years old—Oscar was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a subtype of autism, and Alvin was diagnosed with moderate-to-severe Autism Spectrum Disorder (ASD). Second, Oscar and Alvin are identical twin brothers. Diana and Alex are a married couple and parents to two autistic sons and one older neurotypical (NT, that which is the neuro-social norm) son. Their story highlights the qualities of autism that make the diagnosis at once hair-pulingly challenging and utterly fascinating. As the popular saying in the autism community goes “If you’ve met one child with autism, then you’ve met one child with autism”. Autism manifests differently in each autistic individual, even if they are identical twins. Because autism is such a variable complex diagnosis that captures a vast range of lived experiences, it is difficult to define. At its core, ASD is a neurodevelopmental disorder that impacts a person’s development in two critical areas: 1) persistent deficits in social communication and interaction across multiple contexts including verbal and non-verbal language skills, developing/maintaining social relationships, and demonstrating social-emotional reciprocity; and 2) Restricted, repetitive patterns of behaviors, interests, or activities and hyper- or hypo-reactivity to sensory stimuli (Center for Disease Control, CDC, 2020a, American Psychological Association, APA, 2013). In the case of these twin brothers, deficits in social communication range from Alvin’s complete lack of verbal communication to Oscar’s difficulty making friends at school. Restrictive patterns and sensory sensitivities also manifest differently; Alvin wakes each morning and engages in the repetitive stereotypic movement of ‘hand- flapping’ and seeks out sensory stimulation visually (i.e., watching viscous liquid fall from a 15 container) and a combination of visual and proprioceptive stimulation (i.e., height stimulation climbing onto the roof and jumping off). Oscar demonstrates a much smaller degree of sensory sensitivity and has largely outgrown his stereotypic movements but demonstrates an aptitude for pattern-recognition and memory (i.e., excelling in mathematics and computer science). When overwhelmed, he becomes easily frustrated and agitated (i.e., throwing the computer tablet against the wall when losing a game). To meet the requirements of an ASD diagnosis, these deficits/differences (more on that distinction later in the chapter) must meet an additional three criteria: 1) the symptoms present early in their development, 2) these cause significant clinical impairment, and 3) must not be better explained by intellectual disability or global developmental delay (CDC 2020a). Autism has been the focus of much research across many disciplines in recent decades. Autism researcher Olga Solomon writes “Autism reaches in contradictory and unexpected ways to the very core of what it means to be human: autism is used as a counterexample to empathy and intersubjectivity but also as evidence to the limitless potential and neurodiversity of the human mind” (2010:242). In many ways, autism and autistic experiences offer a prime area of focus for anthropologists. The word ‘anthropology’ may be literally translated as ‘the study of the Human’. The anthropological lens studies what it is to be human and autism offers a neurological and social quandary that sheds light on facets of humanity that are unseen or unrecognized in the neurotypical norm. Anthropologist and father to an autistic child R.R. Grinker writes: “Ironically, the process of understanding autism itself parallels the work that anthropologists do, since the minds of people with autism are sometimes as hard to understand as foreign cultures. Anthropologists…our goal is to make the strange familiar. […] But cultural anthropologists also try to make the familiar strange, seeking to turn our gaze homeward and see our own culture in a new light…the discovery of autism wasn’t so much a discovery of new truths as a new way of seeing a group of cognitive and social 16 differences. Although its likely that autism has existed among humans for at least hundreds of years, until very recently no one thought to create a distinct category for it because our culture—our social, educational, and medical systems—was not ready for it” (Grinker 2007:13). When seen through the anthropological lens, autism transforms from a medical disorder with a diagnostic code attached into an experience that expands and challenges everything we know about what it means to be Human; and furthermore, what it means, as an anthropologist, to be engaged in the study of Humans. This chapter will provide a brief overview of how autism came to be understood as a medical disorder along with a discussion of the recent movement to consider autism not as a pathological process, but rather as neurosensory profile that differs from the norm that is neither inherently negative nor inherently positive. Next, autism is discussed in the context of parenthood and the unique challenges parents of autistic children face while raising their children in a social world that was not constructed with the needs of autistic children in mind. To truly understand the situation of the Puerto Rican autism family, it is essential for the reader to understand both the history and medicalization of autism along with an appreciation for how autism radically changes the parenting experience. This chapter closes with a discussion of health disparities within the autism community and the growing call for increased research investigating the global autism community outside of the White American and European high- income, resource-rich context that dominates the literature. Historical Origins and Contemporary Models of Autism A Brief History of Autism Autism as a biomedical, psychological diagnosis and as a lived experience, has been the focus of much research in large part due to its turbulent history. Autism was first defined within 17 medical literature as Early Infantile Autism in 1943 by Dr. Leo Kanner in his work ‘Autistic Disturbances of Affective Contact’, describing what would go on to be known as the hallmark characteristics of autism such as social withdrawal, stereotypic movements, and language delay (Kanner 1943). Prior to the advent of a recognized autism diagnosis, autistic children were often dismissed as ‘wild’ or ‘holy fools’; a manifestation of a centuries old common practice of attributing disability to ‘religious or moral transgression’ (Pelka 2012). Donovan and Zucker describe Kanner’s contribution as: “It was Kanner who identified the two defining traits common to all of them (the children participating in the study): the extreme preference for aloneness and the extreme need for sameness. It was this pairing of extremes, he decided, that formed the heart of the syndrome he was talking about, whose presence had previously been masked by the differences among the children” (Donvan and Zucker 2016:41). In 1944, child psychiatrist Hans Asperger would publish ‘Autistic Psychopathy in Childhood’, in which he would describe children with what would later be known as Asperger’s Syndrome, a high-functioning subset of ASD that is identified primarily by difficulty in normative social interaction and sensory sensitivity (Asperger 1944). Individuals with Asperger’s were differentiated from classically autistic individuals due largely to their lack of language delay (Silberman 2015). As the characteristics and behaviors that today are recognized as autism began to be increasingly medicalized, these children were often misdiagnosed with childhood schizophrenia (Grinker and Cho 2013, Silberman 2015, Silverman 2012). In the 1990s, the schizophrenia diagnosis fell out of favor; “The concept of childhood schizophrenia fell into disuse not because children’s forms of distress changed, but because the idea of what constituted schizophrenia and autism changed” (Grinker and Cho 2013:47) and the use of the term Pervasive Developmental 18 Disorder (PDD) began to be widely utilized (Silverman 2012, Silberman 2015). Today, autism is largely defined by biomedical and psychological frameworks (APA 2013, CDC 2020a). The Medicalization of Autism The Diagnostic and Statistical Manual (DSM), sometimes referred to as the ‘Bible’ of psychiatry, carries such significant social capital and authority that it can be difficult to remember that through the haze of revisions and reconfigurations of mental illness diagnoses, autism has not always been considered a medical disorder. Autism has undergone the process of medicalization, or “a process by which nonmedical problems become defined and treated as medical problems, usually in terms of illnesses or disorders” (Conrad 1992:209). The medicalization of autism has resulted in the medical model becoming by and far the most popular model for understanding autism. The medical model of disability identifies disability as a defect or deficit with biological origins: “In a medical framework, […] whatever it is that makes being disabled undesirable is connected in a linear fashion to a clinically identifiable abnormality” (Leach Scully 2008:19). The medicalization of autism is not a singular occurrence, as the dominance of Western biomedicine within our society has prompted medical and pharmaceutical intervention to be the frontline treatment for many conditions and disorders, such as Attention Deficit Hyperactivity Disorder (ADHD) and Bipolar Disorder, that were not previously considered as subject to medical authority but are now routinely intervened upon through the use of biomedical and pharmacological treatment (Phillips 2006, Armstrong 2010, Martin 2007). The reader should not misconstrue this as an argument against the beneficial medical and pharmaceutical innovations that have often been life-saving and have facilitated the health and increased quality of life for many living with these conditions, but rather as an understanding of how societal and political 19 conditions have ‘set the stage’ for the ease with which autism was incorporated into the medical vocabulary. Additionally, this incorporation of autism into the medical vocabulary has resulted in the prioritization of biomedical-based autism intervention and the discouragement of non- biomedical interventions such as recreational and community-based therapies (For further discussion on community-based therapies, see Chapter 8). There are several aspects of the autistic experience that facilitate the medicalization of autism. In addition to the three core characteristics of autism mentioned in the above section, an autism diagnosis is often accompanied by other medical co-morbidities. Many autistic individuals, especially in early childhood, may require treatment for various medical co- morbidities such immunological dysfunction, seizure disorders, sleep disorders, and gastrointestinal disorders (Meltzer and Van de Water 2017, Bauman 2010). Additionally, ASD is often not the sole diagnosis for autistic individuals. Autism is a phenotype that is frequently associated with several different genetic conditions and syndromes such as Fragile X syndrome, Rett Syndrome, and Tuberous Sclerosis Complex (Gürkan and Hagerman 2012, Maezawa et al 2011, Moss and Howlin 2009). The potential connection between ASD and disorders with known genetic etiologies has contributed to the coinciding geneticization of autism. First introduced into the literature by epidemiologist Abby Lippman in the early 1990s, geneticization is defined as “the growth of genetics as a means to account for and explain health and disease and the process by which biological conditions constitute social definitions of normality and abnormality” (Lippman 1991:18). Following the success of the Human Genome Project, the boom of genetic sequencing prompted a surge in the search for genetic causation of diseases (Fitzgerald 2017, McGuire 2016, Leach Scully 2008). The scientific community has made significant strides towards identifying 20 potential genetic etiologies of ASD. The stories of Oscar and Alvin that opened this chapter are an example of this, as twin studies have demonstrated that autism may be highly heritable (>80%) (Ronald and Hoekstra 2011). However, pinpointing an exact genetic cause has proven to be difficult due in part to the high degree of pleiotropy (one gene having more than one phenotypic or physical effect) in gene variants associated with autism (Lai et al 2014) and the amount of common variants (single nucleotide polymorphisms with an allele frequency of >5%, SNPs) that seem related to autism, but not to the extent required to meet the standard of causality (Geschwind 2011). Research foundation initiatives, such as the Simon’s Foundation SPARK research project, have dedicated themselves to increasing enrollment of autism families into genetic-based research. Figure 1: SPARK Foundation Homepage Advertising Autism Family Participation in Genetic Studies (SPARK homepage 2020) The increased emphasis on the genetic underpinnings of autism has resulted in a push for autism families to participate in research studies. The SPARK foundation has solicited participation from autism families in sharing their genetic information so they may: 21 “learn more about what causes autism and to develop treatments that can improve the quality of life for people living with the condition. As science continues to shed light on the molecular workings…we will see still more profound progress in our understanding of this condition and, we hope, treatments for those affected” (SPARK homepage 2020). Neurodiversity: Autism reconsidered While it may be the dominant understanding of autism today, the medical model is not without significant critique from autistic individuals and their families and autism researchers alike. Critics who object to the medicalization of autism argue that the biomedical community hyper-focuses on a deficit-view of autism, or what autistic individuals are missing rather than what they have great aptitude for. Anthropologists and parents of an autistic child Hillary Haldane and David Crawford note that “…the discourse of autism has some revealing peculiarities. At bottom, it is a ‘discourse of lack’, a way of classifying a lack of expected behaviors and the presence of some unexpected ones” (2010:26). A few of these unexpected behaviors that are pathologized within the medical model have been considered differently within the literature. Michael Bakan argues that ‘stimming’, the term for self-stimulatory or stereotypic behaviors like hand flapping, rocking, or repetitive vocalizations that are common in autistic individuals, does not necessarily have to be constructed as a negative behavior if embraced as a productive form of communication and “as manifestations of difference, not symptoms of deficit” (Bakan 2014:133). Similarly, echolalia, defined as “lexically, prosodic, and syntactically faithful repetitions of overheard utterances” (Baker 2013:529), is a common autistic behavior that has previously been dismissed as meaningless chatter. Researchers have found that echolalic speech is often contextually appropriate and purposeful; Diana Baker writes “For those with autism, parroting phrases may be inherently gratifying (i.e., self-stimulatory). On the other hand, the repetitions may serve a 22 communicative function, with their code-like meaning easily interpreted by family members and caregivers” (2013:529). This model of autism that conceptualizes autism as a constellation of differences instead of deficits, is at the forefront of the Neurodiversity Movement. Neurodiversity may be defined as “At the most basic level, neurodiversity is simply the idea that the human brain can be wired in a variety of ways, none of them inherently superior” (Antze 2010:318). Neurodiversity as a term was first coined by sociologist Judy Singer, who identifies as autistic, in her doctoral thesis and was popularized by New York Times journalist Harvey Blume in his article about the use of the Internet by autistic individuals (Singer 1999, Blume 1997). Singer described her dissatisfaction with autism being termed as ‘disability’: “The word “disability” itself is problematic. It just doesn’t fit…The word ‘disability’ comes from the pre-quantum era, with its discrete boundaried polar opposition between “able” and “disabled” and fails to encapsulate the situation of people on the spectrum. It has too many connotations of physical and intellectual impairment, and conversely, no association to impairments of social communication for people who are neither physically nor intellectually disabled.” (Singer 2016:44). A neurodiversity approach seeks to move away from a deficit model of understanding differences in learning and communication and away from the practice of othering due to different social behavior. Neurodiversity frames these as differences in human biology and whose recognition and experience are heavily influenced by sociocultural and structural contexts (Silberman 2015). Additionally, neurodiversity allows space for a nuanced understanding of autism that changes given the environment the autistic individual is in; “While the concepts of disability and neurodiversity are not incompatible, the concepts of disorder and neurodiversity are incompatible. This is because we all have areas of strength or difficulty and some cognitive profiles are adaptive in certain environmental niches but manifest as a disability in others” (Baron-Cohen 2017:746). 23 The Neurodiversity Movement may be understood as an effort to ‘demedicalize’ autism. Medicalization is a bi-directional process in which diseases and human conditions may be both incorporated into the medical vocabulary and removed via demedicalizing processes (Conrad 1992, Halfmann 2011). Popular examples of demedicalization include masturbation, homosexuality, and hysteria (Conrad 1992, Waggoner 2016). Sociologists Barker and Galardi describe partial demedicalization as “A problem can be medicalized at some levels or dimensions but not at other levels or dimensions. A problem can also be characterized by greater or lesser degrees of medicalization within each of these levels and dimensions” (2015:124). Autism perhaps may best be understood as having undergone partial demedicalization in recent years, falling somewhere towards the middle of the ‘continuum of medicalization’ (Conrad 2005, Halfmann 2011). It is important to note, however, that the neurodiversity approach and efforts to demedicalize autism do not ‘romanticize’ autism or any other neurological disorder and/or difference (Armstrong 2010). The approach acknowledges the significant physical, psychological, and socioemotional challenges faced by the neurodiverse individuals living in our society—a society that more often than not fails to accommodate, and frequently actively limits, the participation and the success of those living a neurodiverse experience. O’Dell et al. summarize the concept of neurodiversity here: “The concept of neurodiversity can serve to challenge cognitive normalcy and to offer alternative, positive interpretations of autism and autistic identity. Neurodiversity discourse enables a challenge to dominant understandings of autism as a neurological deficit, instead focusing on autism as neurological difference” (O’Dell et al 2016:172). Parents of autistic children around the world are tasked with the rewarding, yet nevertheless challenging responsibility of raising a neurodiverse child in a neurotypical world; a social world that from school systems to recreational activities to childhood 24 birthday parties was not constructed with the unique social and sensory needs of the autism population in mind. Autism and Parenthood The autism experience, especially during childhood, goes beyond the personal experience of the individual with an autism diagnosis. An autism diagnosis is accompanied by a seismic shift for the entire family. Haldane and Crawford write “As with most parents of ASD children, the diagnosis has taken over our life, the lives of a whole household, including our son (who is neurotypical). We are now an autism family, not just a family with autism” (2010:24). In her comparative study of autism households in Kerala, India and Atlanta, Georgia, Sarrett writes “The introduction of autism into a home changes the structure, place, and meaning of a home to families and community members” (2015:255). The importance of an autistic person’s family, in particular their parents, is further complicated by a long history of parental blaming in Western biomedical and psychological practice. Autism’s history is marked by a pervasive pattern of parental—mostly maternal— blaming for their child’s seemingly diminished development. Mothers of autistic children were termed ‘refrigerator mothers’ whose cold and austere demeanor stunted the emotional and physiological development of their child (Bettelheim 1967). Though this etiological hypothesis was dismissed in the United States in the 1980s and replaced with a biomedical framework (Langan 2011), the legacy of this blame continues. Grinker writes “The two hypotheses, that bad parents, especially mothers, cause autism and that autism is associated with high socioeconomic status, are actually hard to shake” (2007:75). The disproportionate blame levied upon mothers of autistic children, in comparison to fathers, is made all the more painful given that mothers of 25 autistic children often carry an also disproportionate amount of responsibility as the primary caretaker (Grinker 2007, Brezis et al 2015, Shaked and Bilu 2006). As the general climate surrounding autism changes due largely to non-profit, parent-run autism awareness organizations, the burden of blame continues to be left further in the past; “increased parental knowledge and more positive perceptions about autism promotes a reduction in feelings of guilt among mothers of children with autism, better well-being, and greater maternal agency” (Samadi et al 2013:29). The roles and responsibilities of parents of autistic children go far beyond the usual realm of the primary caretaker. Sociologist Brendan Hart describes how these parents have ‘inherited an ethical imperative’ to be translators and advocates for their children in a world that often lacks resources to facilitate their success; he writes “By translating their child’s actions and utterances, parents implicitly aim to make their child’s behavior at least somewhat legible to unfamiliar others and to seek recognition for their child’s personhood…through these interactions, they perhaps can, in a sense, convert others to this view of the child as a full person” (Hart 2014:295). Anthropologist Audrey Trainor discusses the laborious role parents of autistic children assume when serving as educational advocates for their children, writing “Parents may find it necessary to accept major responsibilities, including understanding legal technicalities, for insuring the implementation of individualized education programs (IEPs) and protecting their educational rights” (Trainor 2010:245). In their article examining parenthood in ultra-orthodox Jewish autism communities, anthropologists Michal Shaked and Yoram Bilu argue that parents, mostly mothers, serve as a bridge between biomedical treatment and religious/cultural interventions; they write “The coexistence of these divergent, at times incongruent, resources is made possible in part by the fact that only the parents hold the whole picture of their health-seeking behaviors. 26 Medical professionals are often ignorant of religious interventions” (Shaked and Bilu 2006:10). In addition to their roles as social interpreters and advocates for their autistic children, perhaps the signature aspect of being a parent to an autistic child is its unpredictable nature. Grinker speaks to this as he writes of his and his wife’s experience, “Parents of autistic children everywhere must improvise. They do what works” (Grinker 2007:223). Though the necessity of parental advocacy is experienced by almost all autism families, the ability to advocate and access resources is not equally distributed between them. Anthropologists have examined how larger political, economic, and social factors contribute to unequal access. In ‘Parenting a Child with Autism in India’, the authors discuss how the responsibility and work required of parents to access services for their autistic child is increased in low-to-middle income countries as compared to the United States: “In contrast to professional support available to many parents in the West, in India, as in many low-and-middle-income countries, professional services for autism are so scarce that parents who wish to provide services for their child often have no choice but to take on an active role in either aggressively seeking help or providing the intervention themselves” (Brezis et al 2015:279). Trainor utilizes Bourdieuian analysis to examine, in the context of autism parenthood, how cultural capital takes the form of the ability to appropriate knowledge, disposition, and social capital; each of these forms of capital working together to increase access to resources for some parents and decrease access for others. Trainor writes “I argue that positioning parents as partners or collaborators in special education processes have the potential to exacerbate inequity” (2010:246). Acknowledging that some parents feel empowered by their role in their child’s educational experience, she notes this also is not equal across the parent population; “The potential for parent empowerment may be diminished as a result of complex interactions of race- ethnicity, language, socioeconomic background, and school experience” (2010:247). These 27 disparities seen in parental empowerment within the context of autism are brought into sharper relief when considered on a global scale. Autism Around the World Health Disparities in Autism Autism prevalence data is difficult to navigate as the diagnostic spectrum is, as mentioned, vast and highly variable. According to the Autism and Developmental Disabilities Monitoring Network, the autism rate in the United States is estimated to be approximately 1/54 children (CDC 2020b). However, autism diagnoses are by no means spread equally throughout the population due in part to genetic variability and in a much larger part due to disparities in population access to autism diagnostic and evaluation resources (Durkin et al 2015). In the United States, minority children, largely Black and non-White Hispanic children, are less likely to be diagnosed with autism compared to their White peers and, when diagnosed, are more likely to be diagnosed with a more severe form of autism (Mandell 2009). Black and non-White Hispanic children are also more likely to be diagnosed with co-morbid intellectual disability compared to their White peers (Jarquin et al 2011). Children from families of low socioeconomic status are diagnosed later in life compared to their middle- or high-income peers (Durkin et al 2010, Fountain et al 2010). As a whole, the autism population has been shown to have a decreased life expectancy and poorer quality of health in adulthood (Hirvikoski et al 2016, Croen et al 2015), however, these poor health outcomes are exacerbated in autistic individuals from minority and lower socioeconomic backgrounds: “It is likely that people with ASD who are otherwise disadvantaged have poorer physical health and access to health care throughout life, and this in combination with other factors, leads to worse physical health outcomes as individuals with ASD age” (Bishop-Fitzpatrick and Kind 2017:3390). 28 The Global Autism Community: A marginalized majority Disparities in autism diagnosis and access to resources are most striking when viewed on a global scale. The global median prevalence of autism is approximately 62/10,000 (Elsabbagh et al 2012). Autism researchers suggest that this discrepancy in prevalence rates is not accurate to actual autism prevalence but rather likely reflective of diminished or nonexistent access to developmental disorder-related diagnostic tools and resources in low-to-middle-income country settings (de Vries 2016, Elsabbagh et al 2012) and a paucity of epidemiological data available in low-resource regions (Baxter et al 2014). Autism research across the disciplines has not been equitably distributed across the global autism community. The vast majority of autism research has been geared towards those populations with economic and global power; specifically, high-income, industrialized nations in North America, Europe, Scandinavia, and Asia (Baxter et al 2014). This is problematic for several reasons, the most obvious being an issue of proportional representation. South African autism researcher Petrus de Vries writes “Most people with Autism Spectrum Disorders live in low to middle income countries, yet almost everything we know about Autism Spectrum Disorder comes from high-income countries” (de Vries 2016:130). In their article ‘Autism Screening and Diagnosis in Low Resource Settings’, Durkin et al note two overarching barriers to increased research focusing on autism in the context of low-to-middle-income countries (LMICs); 1) the high cost of proprietary tools for diagnosis and delivery of evidence-based therapies and 2) the high cost of training of autism professionals and paraprofessionals (Durkin et al 2015). These two barriers prevent ‘gold-standard’ autism evaluation and treatment technology from being accessible and feasible in LMICs. Rice and Lee write: 29 “Because the diagnosis of autism relies on expert clinical judgement and the observation of developmental characteristics, the emphasis in high-income countries has been on developing and utilizing well-validated ‘gold-standard’ tools to improve the validity and reliability of the autism diagnosis. Major challenges in adopting these diagnostics tools in LMICs are the cost and expertise required for use” (Rice and Lee 2017:516). The financial burden of developing functional and efficient autism care systems is made disproportionately heavier in settings where the survival of children into adulthood is less guaranteed; “The situation in LMICs appears to be that child health programs focus mainly on child survival issues. Very little attention is paid to developmental disabilities at policy and implementation level and as a result budget allocations and human resources deployment is directed away from these programs” (Elsabbagh et al 2012:176). Autism researchers have proposed potential steps to ameliorate these inequities; one example would be to advocate for ‘open source and open access’ models for tools to facilitate treatment of autistic individuals and training for autism professionals in LMICs that would greatly decrease the cost barrier for access (Durkin et al 2015). The broader autism research community has expressed growing concern over the lack of culturally informed autism diagnostic, evaluation, and treatment tools available (Tekola et al 2016, de Vries 2016, Samms-Vaughan 2014, Rice and Lee 2017). Researchers note that striking a balance between universal diagnostic features with gold-standard treatments and culturally informed care “…includes developing and evaluating low-to-no cost screening and diagnostic tools that take cultural considerations into account but preserve identification of core ASD features” (Rice and Lee 2017). This balance consists of more than a simple translation of questionnaires or evaluation protocols to different languages. In their review article assessing autism screening in LMICs, Stewart and Lee write “…future studies of ASD in low- and middle- income settings should strive for cultural adaptation beyond translation using the qualitative and 30 quantitative methods successfully employed in studies of other forms of mental illness or disability globally” (2017:538). This must be a high priority in the future of autism care, as “Technology and neuroscience may hold great promise, but only if we remain embedded in the knowledge, perceptions, and priorities of local communities” (de Vries 2016:135). Lastly, and perhaps most importantly, researchers advocating for the implementation and development of autism research that is equitably distributed in focus across global autism communities have noted that research done in the setting of a LMIC can be readily applied to other LMIC and/or low-resource settings in high-income countries (Rice and Lee 2017, Samms- Vaughan 2014, Durkin et al 2015). Speaking on the context of autism research in Africa, de Vries notes “A global effort for African research findings on all aspects of ASD with direct relevance to improving clinical care will help to meet local needs not just in Africa, but in all low-resource environments around the world” (2016:135). And so, the autism research and advocacy community has expressed deep concern regarding present inequities of research representation that has skewed the benefits of autism research towards the relatively small percentage of autistic individuals and their families living in high socioeconomic areas in high- income countries. Durkin et al voice this concern poignantly when they write, “Thus, while the global inequity in autism research and knowledge is a concern in itself, an even greater concern is the likelihood that undeveloped research capacity in LMICs is preventing most of the world’s population from benefitting from autism research” (Durkin et al 2015:474). Conclusion I began this chapter with an overview of the history of autism, the subsequent medicalization of autism, and the recent reconfiguration of autism as a manifestation of neurodiversity. Next, I discussed parenthood in the context of autism, highlighting the unique 31 challenges parents of autistic children face when raising their neurodiverse children in a neurotypical world. I then examined health disparities within autism and discussed the increased need for global autism research and the call to action for autism researchers of all disciplines to engage in research beyond the bounds of high socioeconomic groups within high-income countries. By providing this critical background knowledge, this chapter has prepared the reader to better understand the general realties of autism and the autism family experience; an understanding that will be essential as subsequent chapters delve deeper into the more-specific context of the Puerto Rican autism family experience. This dissertation research was conducted in the relatively low-income, resource-deficit setting of Puerto Rico and this chapter has underscored the increased need for this kind of autism research. As the following chapter will reveal, Puerto Rican autism families are reliant on and must navigate a challenging and inadequate health care system to access needed resources for their autistic children. 32 CHAPTER 3: An Enchanted Island? The History of and Contemporary Challenges to Puerto Rican Health Care Systems 33 Native of Nowhere Native of nowhere A ticket to the wind on my back I swallow hurricanes My skeleton floats wildly in my body floods Earthquakes vibrate through my limbs Reconfiguring my desires My body A disaster zone of erotic wastes A white wooden house lies wrecked My father pulls the curtains […] My land A body from which I remove the earth with each step I travel that territory called myself Before I become extinct Once again. - Excerpt of ‘Native of Nowhere’, by Chloe S. Georas Puerto Rico is popularly known as the ‘Enchanted Island’, a place recognized for its lush greenery and pristine beaches. However, in September 2017, Puerto Rico made headlines for a very different reason when the island was struck by Hurricane Maria—the worst natural disaster in recent memory in Puerto Rico. The devastation that followed revealed what Puerto Ricans have known for decades: that the island’s infrastructure was in a severe state of disarray and decay. One of the most critically impacted areas was the island’s health care systems. Already struggling due to economic crisis and a shortage of health care professionals, Hurricane Maria blew open the door to unveil how many dire challenges Puerto Ricans face in their attempts to access healthcare on the island. 34 This background chapter provides the critical information necessary to begin to understand the situation of the Puerto Rican autism family. To understand these families’ struggles to navigate the island’s health care systems today, we must first recognize that these systems did not simply appear overnight. Instead, Puerto Rican health care systems have been shaped by centuries’ worth of enduring colonial legacy that has continued to place barriers blocking the path to health care on the island. This chapter provides the context within which we may begin to place the Puerto Rican autism family experience; highlighting the anything but enchanted journey these families must undergo to obtain crucial, yet often inaccessible medical and educational resources. I begin by providing a brief history of Puerto Rico and its early health care systems. Next, I discuss contemporary Puerto Rican health care systems, describing the key challenges facing the millions of Puerto Ricans attempting to access health care on the island: a national debt crisis, an inadequate system of managed care, and a diaspora of Puerto Ricans to mainland United States resulting in a critical shortage of health care professionals. As I will describe in the next chapter (Chapter 4: Setting and Methods), data collection for this dissertation occurred between May 2017 and August 2019 and therefore captures Puerto Rico directly before and after Hurricane Maria. I close this chapter with a discussion of Hurricane Maria, noting how Puerto Rico’s colonial legacy and political status have exacerbated the aftermath and delayed the island’s recovery. A Brief History of Puerto Rico and Early Puerto Rican Health Care Systems Puerto Rico is a small island nation in the Caribbean Sea and is one of four islands forming the Greater Antilles island chain in the West Indies. Puerto Rican culture has been 35 shaped by influences from indigenous Taíno culture, Spanish colonization, the West African slave trade, and US colonial and military influence (Santiago-Valles 1994, Poole 2011, Mathews 1970). Figure 2: Map of Puerto Rico (National Geographic Society 2003) The first Western public health systems on the island began in 1814 in each municipality with the implementation of Spanish Sanitary Commissions, which consisted of a physician, the town judge, a priest, a military commander, and two ‘honored citizens’ (Cruz Monclova 1970). By the end of the 19th century, the Spanish had established a semi-centralized health care system: “The [Spanish] central government had responsibility for professional licensure, epidemiological surveillance, and the provision of preventive care and hospital services for patients suffering from mental conditions, leprosy, and tuberculosis. The responsibility for providing general medical and hospital care to the indigent remained in the local hands” (Arbona and Ramirez de Arellano 1978:9). American health care systems on the island began with the United States invasion of Puerto Rico in 1898, during which the island nation was annexed from Spanish to American colonial rule under the Treaty of Paris ending the Spanish-American War (Mulligan 2014, Santiago-Valles 1994, Arbona and Ramirez de Arellano 1978). Puerto Ricans became United States citizens with the passing of the Jones Act in 1917. However, these newly minted US 36 citizens were viewed very differently from their mainland counterparts. The Puerto Rican people were viewed as ‘uncivilized’ and ‘backward’; in the early 1900s, two American anthropologists representing the Smithsonian and the New York Academy of the Sciences visited Puerto Rico and reported back to their peers on the mainland. These two anthropologists, Jesse Walter Fewkes and John Alden Mason, described Puerto Ricans as an ‘inferior race’ of people, Fewkes writing in his diary “[I have seen] all colors from white to black but almost all have negroid features and rather unintelligent faces” (Fewkes 1901, Duany 2002). Contemporary anthropologist Jorge Duany discusses how these early portrayals shaped how Puerto Ricans would be viewed for decades to come, writing: “These two anthropologists, each in his own way, attempted to domesticate Puerto Ricans by including them in an American narrative of material prosperity, commercial expansion, and moral progress. According to this narrative, Puerto Rico may have occupied a distant and lowly place, yet they could be pliable colonial subjects” (Duany 2002:62). In the 1930s, Puerto Rico was framed as having a culture of poverty in which the Puerto Rican people were ‘docile’, ‘deviant’, and ‘exotic’ (Lewis 1966, Dike 2014). In a letter written in 1932 by Rockefeller Institute pathologist Dr. Cornelius Rhoads to a Boston colleague, the doctor writes: “Porto Ricans are beyond doubt the dirtiest, laziest, most degenerate and thievish race of men ever inhabiting this sphere. What the island needs is not public health work but a tidal wave or something to totally exterminate the population. I have done my best to further the process of extermination by killing off eight and transplanting cancer into several more” (Rosenthal 2003, Haddad 2019). Beginning in the 1940s, views of Puerto Rico held by US scientists and health officials shifted from a ‘backward island nation’ towards a movement that held up Puerto Rico as a ‘social laboratory’ capable of modernizing and educating its inhabitants to ‘modern civilization’: “During the heyday of what the Puerto Rican government would call ‘Operation Bootstrap’, urban planners, economists, sociologists, and other academic researchers attempted to create Puerto Rico, a social laboratory, as a model for Third World economic development, and a ‘showcase’ for democracy” (Lapp 1995:170). 37 Utilized as a living, breathing testing ground, Puerto Rican bodies have been coopted frequently throughout the island’s history for experimentation purposes—ranging from the passing of Law 116 in 1937 promoting the eugenics-driven sterilization program of Puerto Rican women all the way to the 1970s, when the now-infamous use of Puerto Rican bodies as guinea pigs for hormonal products in the food industry was revealed when girls as young as toddler age began menstruating as a result of the hormones in their food (Briggs 2002, Ordover 2014, Sáenz de Rodriguez et al 1985, Engel 1984). It is important to understand the trajectory of the US government’s view of Puerto Rico, from a racist vision of Puerto Ricans as ‘backward’ and ‘uncivilized’ to a perspective that saw Puerto Rico as a social laboratory, a country that had potential to become ‘civilized’ if managed correctly. Health care on the island mirrored this experimentation when Puerto Rico became ground zero to test a new kind of health care system. The Bayamón Project was a pilot program funded by the Rockefeller Foundation in 1954 and was launched as an initiative to regionalize the island’s health care system. The goals of this project were to increase health care island-wide by having at least one local health center in each municipality along with at least one public tertiary care center per region (Arbona and Ramirez de Arellano 1978, Mulligan 2014). The Bayamón region was selected as the pilot site for three reasons: it was located close to the University of Puerto Rico, it had several small rural municipalities, and it included the larger Metro area of San Juan (Arbona and Ramirez de Arellano 1978). The regionalization of health services on the island continued to expand, but the health system encountered significant challenges in the 1970s as Medicare consumers under the Free Choice Program channeled a disproportionate amount of spending into the private sector: 38 “Medicare has thus widened the gap between the private and public sectors, thereby undermining the achievement of equity in the distribution of services, which is one of the implicit goals of regionalization” (Arbona and Ramirez de Arellano 1978:74). By the 1980s, the regionalized public health care system experienced significant strain as Medicare and Medicaid policies enacted by the US government pushed physicians into the private sector where they could see patients on a fee-for-service basis and Medicare spending rates at Puerto Rican hospitals lagged behind the spending rates at US mainland hospital counterparts (Mulligan 2014, Friedman 2005). This pattern of privatization would go on to become a defining factor in shaping contemporary Puerto Rican health care systems. Puerto Rican Health Care Systems Today Contemporary Puerto Rico is home to a population of approximately 3.2 million (World Fact Book 2020). It holds a political status of unincorporated, organized territory and is recognized popularly as a Commonwealth of the United States of America. While Puerto Rico has technically two official languages including Spanish and English, 94% of Puerto Ricans dominant home language is Spanish (World Fact Book 2020). The contemporary health care system functions under the Puerto Rico Department of Health, with health care services divided into seven different regions (Puerto Rico Department of Health 2020). The last decade has been a difficult one for the Puerto Rican people on all fronts. For the average Puerto Rican, accessing health care systems was not easy before Hurricane Maria and has become exponentially more difficult in the aftermath. A holistic understanding of the island’s health care system and the challenges everyday Puerto Ricans face to access health care is critical in order to understand how these difficulties are magnified and intensified in the context 39 of the Puerto Rican autism community, where navigation of and reliance on the health care system is crucial and all too often nearly impossible for these families. Empty Promises: PROMESA and the national debt crisis While Puerto Rico is a commonwealth of the United States and Puerto Ricans are US citizens, the economy of Puerto Rico is poor even when compared to the neediest of states in the US. In 2018, Mississippi, the poorest of the fifty states, had a mean household income of approximately $43,500. This is more than double the mean household income in Puerto Rico of approximately $20,000 (US Census Bureau 2018). This income disparity is even more striking after considering that, if Puerto Rico were a state, it would be the 18th most expensive state to live in with a cost-of-living index of 102.5. For comparison, Mississippi is the most inexpensive state to live in with a cost-of-living index of 84.7 (Missouri Economic Research and Information Center 2020). As of 2018, approximately 43.5% of Puerto Ricans were considered persons in poverty (US Census Bureau 2018). The Puerto Rican economy has faced tremendous challenges in recent years, most significantly due to the phaseout of tax incentives for US firm investments and the steep rise in oil prices (World Fact Book 2020). Puerto Rico’s economic struggles came to a breaking point in 2015 when Governor Alejandro Garcia Padilla declared the island’s anticipated inability to pay back the approximately $73 billion debt to the United States and in 2017 declared the nation bankrupt (Walsh 2017). Puerto Rico’s staggering national debt crisis made headlines worldwide, with many middle-to- upper middle-income countries looking on to see how this crisis would be handled (Caraballo- Cueto and Lara 2017). Initially, many attributed the island nation’s debt to an egregious mishandling of funds and Puerto Rican government corruption; however, economic researchers 40 have traced back the origins of the debt crisis to the deindustrialization, or sharp decline in manufacturing, of the island’s economy when the US government abolished a system of corporate tax incentives that promoted manufacturing jobs on the island (Caraballo-Cueto and Lara 2017). Puerto Rico, in a place of much diminished agency and limited autonomy, was left in what Puerto Rican anthropologist Isa Rodriguez Soto calls an ‘unnatural disaster’: “When Hurricane Maria struck on September 20th, the Puerto Rican people were already amid a disaster, an unnatural disaster created by United States imperialism. The economy was in shambles, there is a total lack of political will to ensure transparency and accountability; and most people were struggling to survive” (Rodriguez Soto 2017: e278). Economists Jose Caraballo-Cueto and Juan Lara note that the Puerto Rican economy was not unique in undergoing deindustrialization in the age of globalization, but it is indeed unique insomuch as Puerto Rico has very limited opportunities to grow their economy when facing US government restrictions as a territory: “What makes the Puerto Rico experience different is the subordination of local industrial policy to US industrial and fiscal incentives, creating a modality of dependent industrialization (and dependent deindustrialization, when incentives were removed) while limiting the set of compensating policy options available to the local government. What may be revealing for other developing nations in Puerto Rico’s experience is how a strong structural change in the economy can trigger a debt crisis” (Caraballo-Cueto and Lara 2017:3). In 2016, US President Barack Obama signed H.R. 5278—the Puerto Rico Oversight, Management, and Economic Stability Act (PROMESA), which established the Financial Oversight and Management Board (Mora et al 2017). The seven board members were appointed by the President’s office; only 2 of the current 7 board members, Ana J. Matosantos and Jaime El Koury, are from Puerto Rico (Financial Oversight and Management Board for Puerto Rico 2020). The governor of Puerto Rico was given a non-voting, ex-officio appointment on the board (Mora et al 2017). This board, known as La Junta Fiscal or simply La Junta, encountered significant pushback both from the Puerto Rican population, who decried the board as an 41 extension of US imperialism and colonial power (Walsh 2016), and several legislators found the act to be little more than what Senator Bob Menendez called ‘a Band-Aid on a bullet hole’ for the Puerto Rican people (White 2016). Figure 3: ‘No to the Dictatorship of Fiscal Control’ Public Graffiti, San Juan, PR, May 2017 (Photo by Author) The island’s economic woes have made the day to day lives of Puerto Rican families much more difficult. This includes health care systems, which make up approximately 20% of the island’s economy (Roman 2015). With increasing unemployment and little options for bettering their circumstances, Puerto Rican families attempting to access health care found themselves facing a concurrent crisis—a crisis in the population’s health insurance coverage and an inadequate system of managed care. The Unforeseen Consequences of La Reforma Though contemporary Puerto Rican health care systems have been significantly impacted by the most recent economic crisis, the island’s current wave of health care struggles may be traced back to the passing of Ley 72: La Reforma de Salud de Puerto Rico [Law 72: The Health 42 Reform of Puerto Rico] in 1993 in which neoliberal changes swept health care policy. What is locally known as ‘La Reforma’ implemented privatized health care policies that provided insurance to the island’s low-income population by contracting three private insurance companies: Triple S, Medical Card System, and Humana (Mulligan 2014). Market-based health care policy and the privatization of health insurance pushed an agenda that restricted government service provision while increasing government oversight. Public health systems in Puerto Rico operate under a pseudo-autonomy, as systems were privatized but remain heavily controlled by the US government (Mulligan 2014). In addition to privatizing medical insurance options, the new health reform policies converted public hospitals into for-profit or non-profit, private sector hospitals (Perreira et al 2017). United States health care insurance systems, which Puerto Rico health reform was modeled on, have been shown by researchers to have many pitfalls including unequal burdens of cost-sharing that disproportionately impact low-income individuals (Hoffman 2006), an unreliable health care safety net (Becker 2004), and an emphasis on a ‘personal responsibility’ ideology that dismisses the structural and syndemic barriers encountered by low-income communities when attempting to access care (Baker and Hunt 2016, Martinez-Hume et al 2017, Bell et al 2017). Following La Reforma, Puerto Rico’s health system has encountered many of those same difficulties. In her ethnography ‘Unmanageable Care’, anthropologist Jessica Mulligan writes that “In practice, market-based health policy failed to transform patients, family members, workers, and citizens seamlessly into neoliberal health care consumers in Puerto Rico” (Mulligan 2014:89). She notes several reasons behind this failure, in particular noting that the culture and value system that is foundational to Puerto Rico and distinct from popular American culture was not considered in the market reforms; writing “the model of the decision-making 43 consumer does not account for the moral and social criteria that people actually employ when making decisions about their health care” (Mulligan 2014:90). Perreira et al report that converting public hospitals to private, for-profit entities has negatively impacted health care delivery on the island: “Some physicians practicing in Puerto Rico consider the privatization of the public health care system the primary source of Puerto Rico’s health care system problems today. They argue that the payment and organizational structures embedded in the current privatized managed care system reduce the capacity to coordinate care across physicians and between regions and shift the focus of care from prevention to treatment” (Perreira et al 2017:5). La Reforma had the unforeseen dire consequence of creating, for the first time, an uninsured population of Puerto Ricans on the island that neither qualify for La Reforma nor can afford privately bought insurance coverage (Lerman 2019, Mulligan 2014). This is a perilous situation for the middle-class people of Puerto Rico, trapped in an upside-down system where they are at once too wealthy and too poor to access health care. The system of privatized managed care on the island has implemented unnecessary challenges for an already vulnerable patient population (Lerman 2019, Mellgard et al 2019, Roman 2015, Mulligan 2014). With the island’s health reform already significantly limiting access to health care for much of the population, the shortage of health care professionals following the recent diaspora of Puerto Ricans to the mainland has taken the task of accessing health care from difficult to nearly impossible. The Diaspora of the Puerto Rican Health Care Professional The national debt crisis and the negative effects of La Reforma have both contributed to a diaspora of Puerto Ricans seeking better employment opportunities in mainland United States. In the decade following the start of the economic crisis (2006-2016), the number of what 44 Rodriguez-Soto terms ‘Diasporicans’, or Puerto Ricans participating in the diaspora to the United States, came to approximately 14% of the island’s population (Rodriguez-Soto 2017, Melendez and Hinojosa 2017). By 2016, there were more Puerto Ricans living in the United States (5.5 million) than on the island (3.4 million) (Melendez and Hinojosa 2017). This diaspora has impacted the health care professional population significantly; from 2005 to 2013, approximately 12% of the island’s physicians and surgeons left the island for the United States (Patron 2017, Lerman 2019). The primary care workforce has been hit particularly hard. The average age of Puerto Rican primary care physicians is increasing as the median age is 60 years old compared to 53 years old in mainland United States (Wilkinson et al 2019). Younger primary care physicians are not remaining on the island to replace their retiring peers, with only 4 out of 10 primary care graduates (including family medicine, general internal medicine, general pediatricians, and general practitioners) remaining on the island to practice between 2011-2017 (Wilkinson et al 2019). There is also a shortage of specialists on the island, including surgeons, neurologists, and endocrinologists (Perreira et al 2017). The most commonly reported reasons for leaving the island include lack of training opportunities, low salaries for medical residents, difficulty becoming certified to contract with health insurance plans, and active recruitment from mainland US employers seeking bilingual English and Spanish speaking Puerto Rican health care professionals (Perreira et al 2017). The increased emigration of health care professionals has left Puerto Ricans struggling to access health care. As Rodriguez-Soto writes “Our brain drain has taken local talent, engineers, doctors, health workers, and teachers to the diaspora. We have left a population that is mainly elderly and sick in many towns outside of San Juan” (2017: e278). The Puerto Rican population is older than their mainland counterparts as 18% of the population is over the age of 65 45 compared to 15% in mainland United States (Kaiser Family Foundation 2017). According to the US Health Resources and Services Administration, half of the population lives in a medically underserved municipality; 72 of the 78 municipalities of Puerto Rico are considered medically underserved with a population to primary care physician ratio of 3,500:1 or higher (Levis-Peralta et al 2016, Rudner 2019). In addition to the shortage of health care professionals, what is available in health care is not equally distributed on the island. According to the Centre for Humanitarian Data, the vast majority of the 71 hospital and medical facilities are clustered in the relatively affluent area of metro San Juan (Humanitarian Data Exchange 2017). Figure 4: Location and Power Status of Hospitals and Medical Facilities in Puerto Rico (Humanitarian Data Exchange 2017) This disparity of health care availability around the island has been exacerbated by the health care professional diaspora, as anthropologist Shir Lerman writes “The decrease in providers impacts Puerto Rican’s time and effort as well as expense. While Puerto Rico is a small island, travel costs and the inconvenience of taking a day off work to travel to a doctor’s office in another city impede disease management” (2019:217). 46 This shortage of health care professionals was a prominent theme throughout my fieldwork, as Puerto Rican autism families lean heavier than most on the health care system to access critical medical resources for their autistic children (for further discussion, see Chapter 8). By summer 2017, this health care professional shortage, along with the debt crisis and inadequate system of managed care, had already critically weakened Puerto Rico’s health care system. When disaster struck in September 2017, the island’s health care crisis went, as they say in Puerto Rico, ‘Desde Guatemala a Guate-peor’ [From Guatemala to Guate-worse]. Maria: The hurricane that broke the camel’s back “…We left running. We left during the flood. We were rescued. We left everything at home, we left each with a backpack…when we returned, there were rats. All of these houses were filled with rats because the rats ran and did not have anywhere to hide…We threw away everything we had…It was tough, but we are here, we are together. We have the desire to work and to fight to keep moving forward” (Alex, interviewed March 5, 2018. On September 20, 2017, Hurricane Maria, a category 5 storm, made landfall in Puerto Rico and plunged the island into its worst natural disaster in a century. Winds topping 170 mph battered the island; Puerto Ricans fled for shelter as homes were demolished and the streets quickly flooded (Pasch, Penny, and Berg 2019, Levenson 2017). The island was still recovering from Hurricane Irma, which struck two weeks prior to Maria, prompting a state of emergency in Puerto Rico. The electrical grid on the island was already partially collapsed following Irma and was extremely vulnerable when Maria hit (Zorrilla 2017). The results of Maria were devastating, with an estimated 4,600 deaths attributed to the storm (Kishore et al 2018). Damage to health care infrastructure was evident in the number of excess deaths. Between September and October 2017, there were approximately 1,205 excess deaths on the island; the most prevalent causes of death being heart disease, diabetes, Alzheimer’s, and septicemia (Cruz-Cano and Mead 2019). 47 While news outlets around the world highlighted the physical damage of the island with the flooded streets and the roofless houses, another type of damage took a toll on the population’s mental health. In 2017, with little resources available within the island’s mental health care system, the suicide rate on the island increased by 16% (Ramphal 2018). Puerto Ricans suffered a historic collective trauma, and the mental health consequences rippled across the island. In their study of post-traumatic stress disorder (PTSD) in Puerto Rican youth following the hurricane, Orengo-Aguayo et al write: “The main findings of the study indicated that youths in Puerto Rico experienced significant disaster-related exposures as a result of Hurricane Maria. Unlike most disasters or negative etiologic risk factors, however, this devastation and concomitant child and adolescent mental health impairment appeared to be nearly ubiquitous regardless of geographical location or socioeconomic status” (Orengo-Aguayo et al 2019:6). Maria brought the entire island to its knees; however, there were many factors at play that go beyond Mother Nature—as Lloréns writes “There was nothing ‘natural’ about Hurricane Maria’s disastrous consequences” (2018:146). The damage wrought by Hurricane Maria was exacerbated significantly by the island’s colonial legacy and contemporary political status. In her article ‘Infrastructure and Colonial Difference in Puerto Rico after Maria’, Puerto Rican anthropologist Rosa E. Ficek connects “…the violence experienced in the aftermath of the hurricane to the violence Puerto Ricans have historically experienced at the hands of the colonial state” (2018:2012). She argues that the underwhelming, and ultimately inadequate, response from the federal government was nothing new, but instead a continuation of the ‘dehumanization’ of Puerto Ricans that has been persisted alongside centuries’ long colonial legacy. She writes “During the Maria disaster, when federal state actors repeatedly invoked old stereotypes of Puerto Ricans as undeserving and unable to govern themselves while allowing 48 thousands to die, the question of how Puerto Ricans identify—and are identified—took on renewed urgency” (Ficek 2018:103). The assertion that the Federal Emergency Management Agency’s (FEMA) response was mitigated by Puerto Rico’s political status is well-supported. When comparing FEMA’s responses in 2017 to three hurricanes hitting US citizens, Hurricane Irma in Florida, Hurricane Harvey in Texas, and Hurricane Maria in Puerto Rico, it is evident that Puerto Rico received substantially less personnel, supplies, and relief funding from FEMA compared to stateside relief efforts (Levenson 2017, Willison et al 2019). Some have proposed that geographical barriers contributed to the diminished relief efforts, but public health researchers have dismissed this as false: “The Trump Administration often argues that the delay of money and goods to PR is based on geographic limitations. Yet, disaster appropriation funding to Puerto Rico took over 4 months post-landfall to reach a comparable amount of money received by Florida and Texas in half the amount of time. The additional 2 months to distribute critical aid is not likely explained by geography, but likely a product of the congressional negotiations …seeking to demonstrate that PR had no sufficient assets to deploy and required financial assistance” (Willison et al 2019:3). The recovery following Hurricane Maria was and continues to be fraught with difficulty. Many schools remain closed for months and the now-iconic blue tarps, as depicted in Figure 5 below, on top of destroyed homes continued to freckle the green landscape during my last leg of fieldwork completed in August 2019—almost two years after the storm. 49 Figure 5: House with a Blue Tarp Serving as a Makeshift Roof Dorado, PR (United States Army Corps of Engineers November 2017) As Lloréns writes “The slow pace of recovery illustrates that the myth is alive and well: that people who live in the tropics are able to sustain great hardships because they are used to living closer to pre-modern times” (2018:140). The true barrier to relief efforts for the island of Puerto Rico and the over 3 million US citizens living there is found not in the ocean’s worth of distance between the island and mainland, but rather within the murky waters of Puerto Rico’s colonial legacy. Conclusion In this chapter, I have reviewed the history of Puerto Rico and the origins of contemporary Puerto Rican health care systems from its early Spanish colonial roots to a US- imported system of regionalized health care to its contemporary system of privatization. Next, I presented three main challenges facing the island’s health care system and the millions of Puerto Ricans attempting to access health care on the island: 1) the national debt crisis, 2) a convoluted, inadequate system of managed care, and 3) a diaspora of Puerto Ricans to mainland US that has resulted in a shortage of health care professionals. Lastly, I discussed how Hurricane Maria and 50 the devastation that followed has exacerbated the already dire situation of health care on the island. Rodriguez-Soto writes “Puerto Rico has always existed at the margins of the empire, a nation where people have always had to fend for themselves knowing that the empire constructs a narrative in which we’re a burden to cover up the reality that we are a resource to exploit” (2017: e279). Accessing quality health care from the margins is a daunting task that all Puerto Ricans living on the island face, but what of those who are even further marginalized within this marginalized nation? That is the case for the thousands of autism families living in Puerto Rico, who are required by the realities of the autism experience to rely heavily on this struggling health care system. In this chapter, I have provided the necessary background to understand the gravity of the situation Puerto Rican autism families are in and the obstacles they must overcome to access needed medical and educational resources for their children. In the next chapter, I narrow my focus to describe the setting of my fieldwork and the methodologies utilized to conduct this study. 51 CHAPTER 4: Settings and Methods 52 This dissertation focuses on the autism community of Puerto Rico. According to the most recent epidemiological data available, approximately 1 in 62 Puerto Rican children are diagnosed with an Autism Spectrum Disorder (Amador and Quiñones 2012). This dissertation examines several core themes surrounding these Puerto Rican autism families and autism treatment/care providers including autism conceptualization, autism causation theory, language practices, and autism resource navigation on the island. In this settings and methods chapter, I will describe how I employed anthropological methodologies and an ethnographic approach to investigate these themes. I sought to utilize what anthropologist James L. Peacock calls a ‘harsh light, soft focus’ approach: “Anthropology seeks conditions of harsh light…as to expose the raw and elemental, the fundamentals of human nature stripped of the fluff of civilization. Within those settings, anthropology focuses softly rather than sharply; rather than focus narrowly on the object, anthropology blurs the boundary between object and milieu so as to include not only the object but also its background, side-ground, and foreground…Were this holistic field of vision extended far enough, it would include the perceiver as well as the object perceived” (Peacock 2001: xi-xii). The research design I describe in this chapter aimed to cast a ‘harsh light’ on the autism community of Puerto Rico, to examine a subject that is often kept in the shadows due to a long history of disability and mental illness stigmatization. The subjects and institutions lit by this approach were also kept in soft focus; the boundaries purposefully blurred between autistic individual and their parents, between autism family and their community, between the struggles of the autism community and the broader struggles of a general Puerto Rican society in turmoil, and between the subjects and myself as researcher. By keeping the light harsh and focus soft, I create a view of the autism family experience in Puerto Rico as seen through an ethnographic perspective. Thus, through my approach, unique answers are brought to the foreground and, as later chapters will argue, provide fertile material for new questions to be investigated that will 53 apply not only to the Puerto Rican autism population, but also to the millions of autism families and communities living in resource-deficit settings around the world. Settings I conducted this research within the autism community of Puerto Rico. Specific data collection sites were determined utilizing what anthropologist George Marcus called the ‘follow the people’ approach, or multi-sited fieldwork (Marcus 1998). To develop the appropriate themes for data collection, I needed to become familiar with the experiences of autism families in Puerto Rico. And so, I adopted a ‘follow the autism family’ approach; going where they go and tagging along whenever invited to begin to gain this familiarity. Data collection sites were selected with the aim of recruiting a geographically and socioeconomically diverse subject pool of Puerto Rican autism families. As discussed in the previous chapter, a great majority of autism resources on the island are clustered in the Metro region of San Juan and surrounding municipalities. Keeping this in mind, I actively sought potential field sites both from the Metro region and other regions of Puerto Rico. Data collection sites for this research may be divided into four autism-related categories: healthcare settings, educational settings, non-profit organizations, and autism family homes. 1) Health Care Settings: locations where autism-related health care services were provided. Health care resources in Puerto Rico may be accessed through either public or private avenues depending on insurance coverage, proximity, and reliability following the infrastructure collapse post-Hurricane Maria. Examples of public health care settings for data collection included the Department of Health’s Autism Center offices, public hospital clinics and waiting rooms, and government-run early intervention offices. Examples of private health care settings included private medical clinics, clinical psychology offices, and offices providing related services. 54 Within the autism community, the term ‘related service’ refers to therapies that are standard protocol in autism treatment including speech therapy, occupational therapy, and physical therapy. Data collection from the healthcare setting is essential, as autism families have been shown to have both increased utilization of healthcare infrastructure and increased health care expenses when compared to families of neurotypical children (Croen et al 2006). Figure 6: Autism Center San Juan, PR, May 2017 (Photo by Author) 2) Educational Settings: locations where autistic children receive academic, vocational, and life- skills education. Educational settings are an essential component of the autism family experience not only in terms of academic education, but also as the main source of resources and treatment interventions for school age children. Educational settings for data collection included public elementary and intermediate schools, private autism-geared schools ranging from pre-K to high school/vocational level, and education-related therapies including Applied Behavioral Analysis (ABA) therapy offices. 3) Non-profit Organizations: locations where low-to-no-cost resources, services, and support are offered to Puerto Rican autism families. These organizations, though represented throughout the 55 island, were more widely available in the Metro region. The autism community depends on these organizations for orientation, advice, and resources for their autistic children. Non-profit organizations that served as sites for data collection included autism parent support groups (i.e., Alianza de Autismo [Autism Alliance]) and Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) activities such as equine therapy, surf therapy, and adaptive soccer programs (for further discussion of CRAAFT activities, see chapter 8). Included non- profit organizations must primarily offer services targeting the autism and/or developmental disability community of Puerto Rico. Jobos Beach, Isabela, PR (Photo: Surf 4 D.E.M. Brochure) Figure 7: Surf Therapy 4) Autism Family Homes: households of Puerto Rican autism families and locations that serve as part of the autism family’s day-to-day activities. In my experience while in field, Puerto Rican autism families were generally welcoming and accommodating. Several parents of autistic children invited me to visit their homes and share meals with the family. I also had the privilege of being invited to accompany parents on daily chores and tasks like grocery shopping. These were an invaluable source of data collection, as these families’ gracious welcoming provided a 56 vastly different experience of the autism family unit than could have been captured within a formalized health care or educational setting. Unit of Analysis: The autism family This dissertation’s unit of analysis is the ‘autism family’ unit, which consists of the autistic individual, their parent(s), and the immediate members of their household (i.e., siblings). During the beginning stages of configuring research design, I thought that the unit of analysis would be the parent as a separate analytic entity from their autistic child. However, as I completed a deeper review of the literature and as fieldwork went underway, it became clear to me that this was an inadequate approach. Observations and interviews with both parents of autistic children and the treatment/care providers for these autistic children obviated the fact that, within this population, I could not draw a hard line between where the parent stopped and the child began. For example, in an interview with Hilda, mother of a 14-year-old autistic son, she remarked that the two of them are as one: “Without him, I do not function—I tell you sincerely. For me, he is my motor. He is my life” (Hilda, interviewed May 27, 2017). Hilda was far from alone in this statement, as Rosa, mother of a 19-year-old autistic son, stated in her interview: “I like to say that the parents of children with autism, we also have autism ((Rosa laughs)), the entire family does! The routine, the method, the complete family has it” (Rosa, interviewed August 29, 2019). The autism studies literature supports the assertion that it is quite difficult, and many times inappropriate, to consider the parent and the child as separate when examining how resources are accessed for the family. Part of the reason for this is the high level of dependency autistic children tend to have on their parents when compared to a neurotypical child, as 85% of autistic individuals present with cognitive and adaptive limitations that limit their ability to live 57 independently in adulthood (Volkmar and Pauls 2003). Formal academic and employment training for the autistic population is also quite poor, with most autistic individuals unable to find steady, full-time employment (Levy and Perry 2011, Chen et al 2015). Therefore, an autism diagnosis becomes a life-altering, lifelong factor for the entire family. Additionally, the realities of the continued stigmatization of autism and autistic behavior in society (Grinker and Cho 2013, Mak and Kwok 2010, Silverman 2008, Kinnear et al 2016) along with the very significant burden of care on autism caregivers (Karst and van Hecke 2012, Stuart and McGrew 2009) often prompt autism families to become socially isolated: “Families with an autistic child tend to be more isolated than others. A family taking care of someone with autism has little time to maintain the social and family networks necessary to ensure future support. And the more seriously impaired someone is, the more likely the extended family is to avoid contact because of the extraordinary burden of care” (Grinker 2007:287). Autism researchers Karst and van Hecke have examined how an autism diagnosis impacts the whole family; they write “The impact of having a child with an ASD extends beyond caregivers to the entire family system. The increase in parenting stress, conflict, and child behavior problems contributes to a higher rate of divorce for parents of children with ASD than in families of typically developing children” (2012:253). In response to this, there is a growing push within the autism studies literature to consider treatment model efficacy not only in terms of the autistic child’s outcomes, but also in terms of the autism families’ outcomes (Karst and van Hecke 2012, Meyer et al 2011, Kuhaneck et al 2015). Utilizing the autism family as the unit of analysis, while undoubtedly making data analysis more complicated, is a firm example of my decision to implement a ‘harsh light, soft focus’ approach; blurring the focus between autistic child and parent to consider them as one unit navigating the infrastructure of Puerto Rico health care systems. Ultimately, this will strengthen the findings and facilitate their relevance to the actual lives of autism families; “The complexity 58 of analyzing all of these domains concurrently and over time is great, but the risk of not doing so …far outweighs the enormity of the task required” (Karst and van Hecke 2012: 271). Methods Anthropologist João Biehl writes: “…anthropology’s unique power to work through juxtaposed fields and particular conditions in which lives are—concurrently, as it were—shaped and foreclosed. I find this ethnographic alternative to be a powerful resource for building social theory…weaving various theoretical debates through the human and ethnographic material” (2013:20). Through this research, I sought to illuminate the human experience of autism families in Puerto Rico and to understand how the simultaneous and at-times juxtaposed identities of ‘autistic’ and ‘Puerto Rican’ are lived. I selected the methodology of this research for its suitability to highlight the distinct ways autism is manifested, seen, and understood in the local context of Puerto Rico. The primary methods used were qualitative methods such as participant-observation and semi-structured interviewing. This research was approved and granted ‘exempt’ status by Michigan State University’s Institutional Review Board in May 2017. Prior to starting on-site fieldwork, I contacted several key autism-related institutions and organizations to schedule interviews during the first two weeks of fieldwork. These meetings ultimately served as key starting points for sampling and recruitment. Data was collected during fieldwork visits in May 2017, March 2018, and August 2019 for a total of 10 weeks in field along with informal, shorter field visits. I have continued to remain in contact with several subjects and organizations via phone calls and emailing/social media; these communications continue to be informative regarding the status of and developments to the autism infrastructure on the island. Participant-Observation I conducted a total of approximately 350 hours of participant-observation over the course of three fieldwork trips. Participant-observation is a cornerstone of anthropological investigation; 59 “the strength of participant observation is that you, as a researcher, become the instrument for both data collection and analysis through your own experience” (Bernard 1994:144-145). Participant-observation took many forms throughout this visit. Prior to each observation session, I informed those in attendance of my role as researcher and obtained verbal consent from all in attendance. The only instances where I did not obtain this verbal consent would be when observing individuals in public locations. Observation sessions may be sorted into roughly two separate categories: a formalized observation session and ‘hanging out’. Formalized participant-observation sessions were scheduled in advance and consisted of activities like formal school tours and pre-arranged meetings with autism treatment/care providers. These formal observation sessions were conducted very early in the fieldwork process and served less as participant-observational opportunities and more as an opportunity to meet autism families and providers at those institutions. Most participant-observation conducted in this research was of the ‘hanging out’ variety. These sessions were extremely useful, as “the anthropologist cannot simply hang around or get absorbed. He must also record, describe, analyze, and eventually formulate, as best he can whatever was learned” (Peacock 2001:70). Examples of participant-observation sessions included attending a craft-making workshop for autistic adults, brushing down horses following equine therapy, grocery shopping with an autism family, and participating in a vigil protesting funding cuts to special education on the island as depicted in Figure 8 below. 60 Figure 8: Mothers at Candlelight Vigil La Fortaleza, Old San Juan, PR (Photo by Author) These sessions offered me as a researcher what Seth Holmes called ‘the embodied experience’; “Alongside the imperative role of record keeper is the critical anthropologist’s responsibility to acknowledge the field notes offered by the body. This embodied experience offers thickness and vividness to the ethnographic description of everyday life” (Holmes 2013:39-40). Participant- observation in autism community activities gave the researcher a tiny fraction of the embodied experience these families had. These are the moments between therapy sessions and doctor’s appointments that make up the lived autism family experience—the highs, the lows, and everything in between. At the end of each day in field, I recorded the day’s observations in my field notes with the assistance of hand-written notes taken throughout the day. I assigned each observation a number and recorded the date, location, and duration of the observation. Observation notes were intended to provide as much detail as possible while my memory and impressions were fresh. I also completed a field diary entry most mornings while in field. These field diary entries were 61 not as structured as the field notes. Instead, the field diary served as a place to sketch diagrams of networks and work through potential theories. Sampling and Recruitment Subjects were recruited to participate in this research utilizing a modified snowball sampling method. Snowball sampling has been demonstrated to be “…very useful in studies of social networks, where the object is to find out who people know and how they know each other. It is also useful in studies of small, bounded, or difficult-to-find populations” (Bernard 1994:97). A critical feature of autism resource networks is the ways in which autism families across the island connect with both treatment/care providers and with each other. Additionally, despite increased efforts in recent years towards autism awareness and destigmatization, autism continues to be a stigmatized (Liao et al 2019, Kinnear et al 2016). Therefore, autism families are not always readily identifiable. I determined that snowball sampling was the best method to recruit autism families. As I had no prior autism family contacts in Puerto Rico, I began by establishing key treatment/care provider informants. There were cases where these key informants also happened to be parents of autistic children. These ‘parent + treatment/care provider’ informants proved to be the most helpful and well-connected of the key informants because they had extensive networks of both autism parent friendships and autism treatment/care provider colleagues. Instead of starting with one ‘snowball’ for recruitment, I modified the snowball sampling method by establishing several strategically placed and regionally dispersed ‘starter snowballs’ that quickly grew throughout the field visit. I purposefully established key informants throughout 6 of the 7 health care regions of the island as determined by the Puerto Rican Department of Health. Unfortunately, I was unable to establish a key informant in the east coast health region of Fajardo due to transportation 62 constraints and limited autism resource availability in this region. It was through these key informants that I was able to contact autism families and begin snowball sampling from there. I knew when I had reached saturation for subject recruitment when informants began to regularly offer to recruit subjects that had already been interviewed. Figure 9 below depicts the number of subjects interviewed by health care region, demonstrating the variety of regions that were represented in this study. Parents: 2 Providers: 0 Parents: 4 Providers: 0 Parents: 11 Providers: 9 Parents: 0 Providers: 0 Parents: 15 Providers: 15 Parents: 2 Providers: 5 Parents: 1 Providers: 3 Figure 9: Interviewed Subjects by Health Care Region (Map retrieved from Puerto Rico Dept. of Health 2020; Edited by Author) 63 Interviewing In addition to participant-observation, my main mechanism of data collection was semi- structured interviewing. Semi-structured interviewing was the ideal style of interviewing for this study as it provides enough structure to be able to facilitate comparisons between subjects while still allowing for flexibility in subject response. Interview subjects were separated into two distinct cohorts: 1) parents of autistic children and 2) autism treatment/care providers. To meet inclusion criteria for the parent group, the subject must have at least one child with a primary autism diagnosis. This diagnosis may be either professionally diagnosed or self-diagnosed, however all subjects in this research had children who were professionally diagnosed. One subject interviewed was ultimately removed from the study once the interviewer became aware that her child did not have a primary autism diagnosis but rather had a congenital brain malformation that led to “autistic-like behavior” according to her parent. To meet inclusion criteria for the autism treatment/care provider group, subjects must fit into one of the following sub-groups: 1) the subject works and/or volunteers providing direct autism-related services for the Puerto Rican autism population or 2) the subject is a sibling or extended family member of a Puerto Rican autistic individual and provides significant caregiving for that autistic individual. All subjects were over the age of 18 and were all able to provide informed consent prior to being interviewed. After obtaining signed informed consent and prior to beginning the interview, I assured the subjects that everything discussed in the interview would be kept anonymous and would not be discussed with any other members of the autism community of Puerto Rico—including any other parents or autism treatment/care providers of any kind. I believed it was essential to assure my subjects of my discretion in order to obtain responses that were as sincere and transparent as 64 possible; given parents of autistic children may worry about any of their negative opinions of Puerto Rican autism care may get back to their children’s treatment/care providers and their child’s care may be compromised. Vice-versa, autism treatment/care providers may worry that any of their negative opinions about autism families or oversight of autism care by the government in Puerto Rico may be shared and impact their livelihood. I assured all subjects that their responses would be anonymized and that pseudonyms would be used in any publications resulting from this research. While some subjects expressed a desire for their names to be used in publication, I ultimately decided to utilize pseudonyms only as identifying one subject has the potential to lead to the identification of other subjects interviewed who might wish to remain anonymous. I interviewed the subjects following the designated interview template for their appropriate cohort of either autism parent or autism treatment/care provider (for complete interview templates, please refer to Appendix). Following a general review of conducted interviews for emerging themes and trends, the interview templates used during follow-up fieldwork in March 2018 and August 2019 were updated to include questions about recovery following Hurricane Maria and about language use/beliefs surrounding language in the context of autism. I conducted a total of 73 interviews for this study; subjects included 35 distinct parents and 32 distinct treatment/care providers. The remaining 6 interviews consisted of follow-up interviews (3 follow-ups with parents and 3 follow-ups with treatment/care providers). Length of interview ranged from 19 minutes to 120 minutes, with the average interview taking approximately 45 minutes. I conducted the interviews wherever was most convenient for the subject. I attempted to conduct interviews in private settings as to encourage a safe and 65 supportive atmosphere for the subjects to share their perspective. Each subject was given the option to conduct the interview in either English or Spanish; 5 of the 32 autism treatment/care providers and only 1 of the 35 parents interviewed elected the English option. I conducted the interviews in-person except for two interviews conducted via telephone by subject’s request. All interviews, including phone interviews, were audio recorded except for one subject who declined recording. The tables below detail the demographic information of the 35 interviewed parents (Table 1), the 39 autistic children of these interviewed parents (Table 2), and the 32 interviewed treatment/care providers (Table 3). Table 1: Selected Characteristics of 35 Parents Interviewed Number 35 Participants Gender Age Female Male 18-29 30-39 40-49 50-59 Unknown Percentage - 86% 14% 3% 26% 44% 26% 3% 17% 57% 20% 6% 89% 11% 66% 11% 23% 85% 5% 5% 5% 9% 26% 29% 20% 6% 6% 6% 30 5 1 9 15 9 1 6 20 7 2 31 4 23 4 8 17 1 1 1 3 9 10 7 2 2 2 Marital status Single Married Separated/divorced Widowed Number of autistic children in household 1 2 Employment status Employed Disabled Non-disabled stay-at-home parent Spouse employment status Employed Disabled Non-disabled stay-at-home parent Unknown Approximate annual household income <$10,000 $10-20,000 $20,000-50,000 $50,000-80,000 $80,000-100,000 >$100,000 Unknown 66 Table 2: Selected Characteristics of 39 Autistic Children* of Parents Interviewed Number Percentage Participants Gender Male Female Age at time of autism diagnosis 2 3 4 5 >5 Unknown Age at time of parent’s first interview 0-5 6-10 11-17 18-21 >21 39 36 3 17 9 4 5 1 3 8 6 16 7 2 *No children were interviewed for this study. Table 3: Selected Characteristics of Autism Treatment/Care Providers Interviewed - 97% 8% 44% 23% 10% 13% 3% 8% 21% 15% 41% 18% 5% Percentage - 63% 38% 19% 28% 22% 16% 13% 3% 6% 19% 31% 3% 3% 9% 9% 6% 6% 3% 3% 3% 28% 19% 19% 16% 16% Participants Gender Age Provider Role Female Male 18-29 30-39 40-49 50-59 60-69 70-79 Number 32 20 12 6 9 7 5 4 1 2 6 10 1 1 3 3 2 2 1 1 1 9 6 6 5 5 Extended family member Teacher/school administration Clinical psychologist* Speech pathologist Occupational therapist Physician Equine therapist Social worker BCBA** Lawyer Paraprofessional Experience in Autism Community < 1 year 1-5 years 6-10 years 11-15 years 16-20 years 20 < years *Includes both clinical psychologists and students completing a clinical psychology doctoral program **Board Certified Behavioral Analyst, a therapist who specializes in Applied Behavioral Analysis (ABA) 67 Data Analysis Data analysis was an ongoing process throughout fieldwork, as field notes were consistently reviewed for emerging themes and trends. My interview technique and style were also informed by this analysis and were adjusted accordingly. Prior to the second field-site visit (March 2018) and again prior to the third field-site visit (August 2019), I reviewed all interview notes, field notes, and field diary entries to inform any needed updates to interview questions and locations of interest. In between field site visits, I reviewed data collected and began initial phases of data analysis into focused topics of the research (i.e., bilingualism in the Puerto Rican autism community). I used this analysis to present my original research at multiple academic conferences. This assisted my research greatly by providing peer-feedback regarding my research and potential future directions to explore once I returned to the field. After all fieldwork was completed, the interviews were transcribed by myself with the help of two Spanish-fluent transcription assistants. I then distilled each transcript into an interview summary to facilitate coding, grouped by their subject cohort (parent or autism treatment/care provider), and re-read to obtain a broad picture of emerging narrative themes and to inform the building of the code book. I utilized Microsoft Excel and NVivo, a qualitative analysis software, to develop a coding system that facilitated thematic coding of the qualitative data. I applied approximately 50 codes, many of which were nested into several sub-categories, to each interview. Many of the codes were developed a priori from specific questions that the subjects were asked such as ‘In your own words, what is autism?’, each answer was then coded into a pre-determined sub-category such as ‘biomedical disorder’, ‘a different way of being’, or ‘a gift from God’. In the case of double-barreled questions (i.e., ‘Do you think autism can and/or should be cured?’), I created separate codes for each issue of the question. I applied an additional 68 10-15 codes only to the parent cohort, as their responses and experiences were my research priority. These additional codes concerned parent-specific topics such as the details of how their autistic child came to be diagnosed or the difficulties in obtaining insurance coverage for their child. As coding began, new data trends emerged, and codes were added for those new trends (i.e., a code for ‘vaccine decisions’). I took care to recode any interviews that had already been coded prior to the addition of the new code to ensure all data points corresponding to that code were collected. After interview coding was completed and demographic tables were assembled, I created final summary tables corresponding to each proposed data chapter by utilizing Microsoft Excel to explore core research themes and compare responses both within and across the cohort pools. These summary tables consisted of data collected from both coded interviews and observational data from field notes and field diary. By doing so, I was able to build a broad frame of reference for each specific data chapter topic that indexed specific interviews or notes when needed. From there, I built an outline of data findings to facilitate the composition of the data chapters. The chapters that follow will present the findings of this data analysis, beginning with a discussion of autism conceptualization within the autism community of Puerto Rico. 69 ‘Nos Tocó’: Autism Conceptualization, Metaphor, and Empowered Fatalismo CHAPTER 5: 70 “In your own words, what is autism?” I asked Mona, mother of a 10-year-old autistic son in Puerto Rico. We were both perched on bleachers at a soccer field, watching her son attempt to weave through cones while kicking the ball. Mona responded to my question by throwing her head back and laughing so hard that I—ever the awkward anthropologist—dropped my tape recorder and winced at each of the subsequent metallic thuds as it tumbled down the bleachers. “I’m so sorry honey!” Mona said, as I climbed back up the bleachers after retrieving my now slightly damaged recorder. “It’s just that question is the question. It’s so funny, or I guess sad, that everyone has an answer to that question, but no one knows the answer to that question, right?” (Mona, interviewed August 30, 2019). Mona was the last of the 67 individuals that I interviewed for this study and she was exactly right. I had asked this question 67 times and I received a different answer every time. As discussed in Chapter 2, conceptualizations of autism as a neurodevelopmental disorder and as a lived social phenomenon have evolved significantly overtime (Gyawali and Patra 2019, Silberman 2015, Mehling and Tasse 2016). In this chapter, I will examine how autism is conceptualized within the Puerto Rican autism community from the perspective of parents of autistic children and autism treatment/care providers in support of the main argument of this dissertation: that our understandings of, and subsequent development of treatment/intervention for, autism must be informed by the local politico-economic and sociocultural context in which this neurodevelopmental disorder is lived. In asking my subjects, ‘In your own words, what is autism?’ I was not seeking to ‘quiz’ these parents and providers on their ability to quote medical texts and tomes. Rather, I sought to lay bare their locally constructed understandings of what autism ‘is’ as informed by their personal experiences as members of the Puerto Rican autism community. Their responses were 71 heterogenous and fascinating, laced with vivid description, metaphoric language, and the role of Divine Providence. I begin with a discussion of the use of metaphor in disease conceptualization before examining how parents and providers whom I interviewed in Puerto Rico conceptualized autism. I note how these conceptualizations, as often demonstrated through metaphor, facilitate parents and providers to adopt a model of autism that suits their respective roles in the lives of their autistic children and patients. I then discuss the perspectives of the unique sub-group of parents whom I interviewed who were both parents and autism treatment/care providers, whose responses further elucidated this paradigm. Next, I discuss the complex role of fatalismo, or the idea that fate is predetermined and cannot be changed (Lopez et al 2018), in influencing how parents may conceptualize autism in Puerto Rico. I close this chapter with a discussion of my findings regarding fatalismo, which challenge previous notions of how this common Latino cultural construct affects families’ healthcare decisions. Autism Conceptualization and the Role of Metaphor Metaphor and Disease Conceptualization The use of metaphor in the conceptualization of disease or illness has been examined in settings such as Alzheimer’s dementia (Zimmermann 2017), contemporary COVID-19 pandemic (Wicke and Bolognesi 2020), and cancer (Sontag 1978). In her seminal work ‘Illness as Metaphor’, anthropologist Susan Sontag argued that metaphor disguises the truth of illness and may work to shame or discourage cancer patients; she writes “My point is that illness is not metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one purified of, most resistant to, metaphoric thinking” (Sontag 1978:3). Not all anthropologists, however, agree with that assessment of the role of metaphor in disease conceptualization. Nancy Scheper-Hughes and Margaret Lock argue that: 72 “…it is impossible to rid powerful human experiences of metaphor […] that the most ‘truthful’ way of regarding illness is one that pierces the hidden meanings, the metaphors of illness, the messages in the bottle through which patients, and society at large, express their horror…at suffering, illness, and decay” (Scheper-Hughes and Lock 1987:138). Anthropologist Gay Becker has written about the role of metaphor in times of disruption in the context of her subject matter of infertility. She writes: “While metaphors themselves do not reorganize thinking, they serve as conduits for locating new meaning that, in turn, may lead to the reorganization of thinking. When life has been disrupted, this metaphoric process may facilitate action in response to possibilities not previously contemplated. As a cultural resource, metaphor is therefore one mediator of disruption that enables individuals to recreate a sense of continuity and to reconnect themselves to the social and cultural order after a disruption” (Becker 1994:404). Speaking specifically to the use of metaphor in the setting of autism, anthropologist M. Ariel Cascio argues that metaphorical language can be very useful as “Metaphors serve to bridge seemingly unrelated concepts, translating one into the language of the other” (2015:237). Broderick and Ne’Eman have theorized two purposes for autism metaphors: 1) to provide commonsensical narrative congruence between common understandings of autism and dominant notions about its etiologies or causes and 2) to provide creative commonsensical narrative congruence between common understandings of autism and dominant notions about appropriate responses to or interventions for autism (Broderick and Ne’Eman 2008). Indeed, how does one explain that a child’s toe-pointed walk, inability to look someone in the eye, aversion to abstract language, and gastrointestinal distress are all parts of the same package we as a society label as autism without getting at least a little bit creative in our descriptive language? Throughout my observations and interviews with parents (n=35) and providers (n=32) within the Puerto Rican autism community, I found that these ‘commonsensical narratives’ as manifested through metaphor provided linguistic platforms to facilitate differential conceptualizations of autism as required by the role of parent, provider, or at times the two simultaneously. In the next section, I begin with the perspective of the parent. 73 Parental Autism Conceptualization When I asked parents of autistic children in Puerto Rico ‘In your own words, what is autism?’, many first responded with a conceptualization of autism as a type of developmental condition. A representative example is Glady’s response: “Autism is a neurodevelopmental condition that is observed in the first stage of a child’s development affecting their speech, social interaction, all of that. […] Basically, it is a condition that carries with it much effort for that child to be able to have a relatively normal life and it requires a lot of therapy, support, consistency, and an individualized education” (Gladys, interviewed August 29, 2019). The majority of parents with whom I spoke in this community were educated on the topic of autism, though many admitted to there being a steep learning curve upon hearing their child’s diagnosis. In my examination of parental conceptualizations of autism, I found that their understandings of this phenomena were rarely bounded by the biomedical. Through my interviews with parents of autistic children in Puerto Rico, I found that they frequently expanded upon their conceptualization of autism through the use of metaphorical language to convey to me what autism really is in their experience as a parent beyond medical and psychological definitions. These conceptualizations conveyed a model of autism that embraces a Neurodiversity approach, which recognizes autism and autistic behavior as neither inherently positive nor negative but as manifestation of neurological difference (for further discussion of the Neurodiversity Movement, see Chapter 2). For example, Lola, mother of two autistic sons, described her understanding of autism as “a surprise in the brain” (Lola, interviewed August 27, 2019). Other parents conveyed their understandings of autism by deploying common metaphors like ‘being a square peg in a round hole’, but in a new manner. Magdalena embraced a neurodiversity approach in her answer to my question ‘In your own words, what is autism?’ in this way: 74 “At first, I saw autism as something that is horrible…that will ruin your life. Now, I have realized autism is something beautiful…I know that my boy has the capacity to see details, that are gifts from God, and we neurotypicals, we do not notice those things. […] Society is accustomed to exerting roles on individuals. If you are not square because society is square, well you are strange. And they [autistic children] are happy being round. What makes them happy is not what makes a square happy” (Magdalena, interviewed August 27, 2019). I conducted my interview with Lizbeth and Pablo, a married couple and parents of a 12- year-old high-functioning autistic son, at a table in a mall food court. As we sipped our coffees, Pablo described autism in his own words as a ‘great wall’. Though this metaphor may be considered deficit-focused at first glance, he described a more nuanced understanding here: “They have a great wall that prevents them from understanding many social things…they see the world in a different way from the way we can see it. And seeing the difference, well, that creates challenges for them. […] I don’t think it is necessarily a limitation…it is that they are children with special characteristics. And I would even go so far as to say that many of us who do not have autism, we wish to have what they have because they have many talents. For example, with memory. The way they remember details” (Pablo, interviewed August 27, 2019). In Pablo’s perspective, the trope of autism as a ‘wall’ is turned on its head. Pablo acknowledges the social difficulties his son faces due to his ‘different way of seeing the world’, but simultaneously notes that this difference is not inherently negative—that behind this wall there are also talents such as memory skills that he, as a neurotypical person, does not possess. Ramona, mother of two autistic sons ages 5 and 14, also indexed ‘detail-oriented’ as a characteristic feature of autism when she described her understanding of autism in terms of different computer operating systems: “I think about it like this…we are the Windows programming system and they are the MAC. The person who uses Windows has a difficult time understanding MAC and the person who uses MAC has a difficult time understanding Windows. MAC is very visual…it is not very logical. Windows is more abstract and the graphics are flat. MAC has the ability where all the best design programs are for MAC. And these kids favor concrete things…they notice the details” (Ramona, interviewed May 25, 2017). By utilizing this metaphor of ‘Windows vs MAC’ operating systems, Ramona revealed her understanding of autism as not deficit-based, but rather as a manifestation of a difference in 75 programming so to speak. Alex, father of twin autistic boys, also utilized creative metaphor to describe his understanding of autism. With his background in design and marketing, Alex relied on a metaphor from the world of art: “Autism is a different way of seeing the world and seeing life…Andy Warhol and many artists of the 60s and 70s that were the vanguards of that time were considered weird or strange. A lot of them probably had a kind of autism because when they saw an image, they drew the negative of the image. The opposite. And from that, they were inspired! Children with autism see the negative, they see the parts of the image we do not see” (Alex, interviewed May 29, 2017). By providing parents the opportunity to describe autism in their own words, I was able to record their understandings of autism beyond the standard typically deficit-focused definitions of a neurodevelopmental disorder. As Blacher, Cohen, and Azad write, “actual symptoms of ASD may be in the eye of the beholder” (2014:1655) and through their use of metaphor, these parents were able to share with me what their eyes saw beyond the biomedical to appreciate their children’s autistic behavior and neurodiverse attributes in a more positive or tolerant light. Therefore, these metaphors may serve as windows into the parental perspective of the lived autism family experience that may prove essential in obtaining a holistic understanding of that experience as lived in Puerto Rican society. In the next section, I examine autism conceptualization from the perspective of the Puerto Rican autism treatment/care provider. Provider Autism Conceptualization I asked autism treatment/care providers (n=32) in Puerto Rico the question: “In your own words, what is autism?”. As one might predict, the treatment/care provider cohort overwhelmingly provided a biomedically based definition. These biomedical definitions have both historically and contemporarily emphasized a deficit-focused perception of this neurodevelopmental disorder, focusing on what the patient lacks rather than what they have aptitude for (for further discussion on medical models of autism, see Chapter 2). For example, I 76 asked Tatiana, a paraprofessional at a clinical autism institute, ‘In your own words, what is autism?’. Her response was as follows: “It is when the brain tries to work those neurological connections, but those children have problems with those connections in terms of how the patterns are being formed. So, they have difficulty developing normal patterns that any human being will normally develop with age. That’s what I think autism is, that limitation that makes them have to work harder in order to develop those growing and learning patterns” (Tatiana, interviewed May 20, 2017). Biomedical conceptualizations of autism as shared by Puerto Rican autism treatment/care providers whom I interviewed displayed a shared emphasis that autism was not to be considered a disease, but rather considered as a ‘condition’ or ‘disorder’. This movement away from constructions of autism as a disease are well-reflected in the literature as the great variation in symptomatology, characteristics, and lived autistic experiences are now considered too vast to be captured adequately in a standardized disease model (Grinker 2015, Kaufman 2010, Mole 2017). As such, autism treatment/care providers with whom I spoke seemed to embrace what Mole writes here: “the rules governing our application of the disease concept belong to a language game that we ought to refrain from playing when autism is at issue” (2017:1137). In my interview with Carla, a services coordinator and speech pathology graduate student, she made a point of differentiating autism from disease, “A person with autism sees life in a different way. …It is not a disease. For me, it is a neurological condition that affects the way these children learn and develop” (Carla, interviewed May 8, 2017). I interviewed Cristian, a geneticist, at his private clinic. I sat across from him at his desk, taking notes as he responded to my question ‘In your own words, what is autism?’ here: “The diagnosis of autism is not a laboratory diagnosis. It is a diagnosis of behavior and development where, in accordance with the DSM-V, they have to have a speech problem, sensory problems, stereotypical movements, socialization problems...let’s suppose that the child arrived with a chromosomal microarray and has a mutation. Well, they have a mutation that is associated with this and that, but you already have your autism diagnosis. We have to work with both of those things. We can’t say ‘Let’s forget about autism’ and 77 we are going to just deal with this. We have to deal with both” (Cristian, interviewed May 19, 2017). Cristian’s conceptualization of autism is rooted in distinguishing how it comes to be diagnosed, using observations of ‘behavior and development’ rather than genetic testing such as a ‘chromosomal microarray’. As he explained above, Cristian makes clear to parents of his patients that autism itself as a diagnosis and a lived experience are separate from the genetic variations that may or may not be a contributor to their child’s autism symptomatology or behavioral phenotype. Autism itself, according to this geneticist, is understood beyond the double helix of DNA and is a condition offering behavioral and developmental twists and turns that ‘must be dealt with’. Autism treatment/care providers whom I interviewed for this study were more likely to use a biomedical, deficit-based understanding of autism while providing a clinical definition of this neurodevelopmental disorder. However, when providers occasionally elaborated on these definitions through the use of metaphorical language, some conveyed a conceptualization of autism similar to the parental cohort and embraced a neurodiversity approach. For example, Renee, a behavioral therapist, offered a clinical definition of autism and then elaborated, “…but in addition to being a condition, it is also a different way of looking at the world…it is the same world through a different glass” (Renee, interviewed May 16, 2017). However, there was a small portion of the treatment/care provider cohort (n=4) that deployed metaphorical language to further emphasize deficit-focused characterizations of autism by using historic metaphors like autism as ‘retreat/withdrawal/being trapped’. In my interview with Laura, an occupational therapist, she responded to my question ‘In your own words, what is autism?’ with “For me, a child with autism is a child hidden inside of a safe box which requires certain stimuli to get out of there and be functional in this world” (Laura, interviewed May 20, 78 2017). And in my interview with Silvio, a special education teacher, he responded “Autism…is like Pandora’s box. One never knows what will happen with children with autism, how they are going to react. Like anyone who is trapped, they are not predictable” (Silvio, interviewed May 29, 2017). These metaphors harkened back to antiquated and damaging conceptualizations popularized by psychoanalysts such as Bruno Bettelheim; who promoted the idea that autistic individuals were psychologically ‘damaged’ by their cold, austere ‘refrigerator’ mothers and therefore psychologically retreated into themselves to escape (Bettelheim 1967, for further discussion on historical understandings of autism, see Chapter 2). As Broderick and Ne’Eman write: “When the ‘cause’ of autism was conceptualized as psychogenic in nature, it made perfect sense for dominant cultural metaphors to involve the child as an active agent that autonomously, willfully, volitionally withdrew or retreated, thus creating the cultural space between the child and the rest of the world” (Broderick and Ne’Eman 2008:466). Metaphors such as an autistic child ‘locked away’ or ‘trapped in an empty fortress’ have been argued to be inaccurate and highly damaging as these “…metaphors say little about autism as a condition while speaking volumes about cultural anxiety” (Waltz 2003:8). And so, while the use of this type of deficit-focused metaphoric language was not in this study found to be universal by any means, it may prove useful to examine further the persistence of these ‘trapped autistic child’ tropes within the autism treatment/care provider community in Puerto Rico as these conceptualizations of autism have been shown to have a negative impact on and perpetuate stigma against autism families (Broderick and Ne’Eman 2008, Silverman 2012, McKenna, Gulyn and Diaz-Asper 2018, Langan 2011, Waltz 2003). A common theme also emerged through my interviews with providers in Puerto Rico indexing autism as being understood not only as a developmental condition, but also as a 79 learning or personal growth opportunity for the treatment/care provider themselves. In my interview with Paulina, an educational psychologist, she described a conceptualization of autism that spoke more to what the lived experience of autism as observed in her patients provided her as a treatment/care provider rather than what autism ‘is’ per say for the autistic person: “Well, beyond what the science says…autism has been an opportunity to be able to amplify how one can love another human being without barriers. That love for another human being is unconditional. There is no need to feel shame. They have taught me that the social rules are not the most important things” (Paulina, May 15, 2017). When speaking with Belinda, a paraprofessional at an autism treatment center, she told me that “Autism for me is like…another world, their own world…these kids are extremely sensitive and loving and I think that there are many things that they can teach us” (Belinda, interviewed May 18, 2017). Rita, a speech pathologist, described her understanding of autism as a developmental disorder and then elaborated: “I see them as very special people, brilliant, and well, with many interesting things to learn from them…its like they notice the details. That sometimes you don’t realize what you don’t notice until they show you. That has a lot of value…we are wrapped up in daily life and we do not notice those details. I think that is the loveliest thing about them” (Rita, May 18, 2017). Dual Autism Conceptualization by Parent-Providers Within my subject pool of parents of autistic children, there was an interesting subset of parents (n=4) who were also professional autism treatment/care providers. To clarify any questions about methodology, parent-provider subjects were considered in this study as primarily parents and secondarily professional autism providers. Therefore, parent-provider subjects were interviewed using the parent interview template (see Appendix). One example of a parent- provider was Beatriz, who is both mother of a 21-year-old autistic son and a services coordinator with a developmental disabilities non-profit organization. During my interview with Beatriz, she described her understanding of autism as having dual, though not necessarily competing, 80 conceptualizations from her ‘professional’ and ‘parental’ selves. When I asked, ‘In your own words, what is autism?’, she responded: “I have to separate the professional self from my mother self. It is difficult. I can say that autism is a neurological disorder…it is like an imbalance in the cerebral neurons, a disequilibrium, right? But…autism is also a journey that can be called marvelous as it takes you to distinct areas and you are amazed by what these young people are able to realize…how brilliant they are and all that they can accomplish” (Beatriz, interviewed May 19, 2017). Beatriz’s understanding of autism as a professional described the potential etiology of autism and autism as a deviation from the norm, a ‘disorder of disequilibrium’. However, when she described her understanding of autism as a parent, she deployed metaphorical language in which autism is ‘a marvelous journey’, highlighting a neurodiversity approach. Hilda, mother of a 14-year-old autistic son and an occupational therapist working with the autism population on the island, also expressed dual conceptualizations. When I asked, ‘In your own words, what is autism?’, she began a detailed response separating her ‘professional understanding’ from her understanding ‘as a mom’. She told me: “From my understanding as a professional, the latest is that they say autism is a neuronal connection problem in the nervous system where stimuli do not reach certain regions of the brain that they are related to, for example, communication, speech and language, and the social parts. There are some genes related to autism too, but those are only theories at this time. […] But… autism for me as a mom is a completely different status in life where one learns to live to their rhythm and not just to one’s own rhythm as a parent. Not meeting our expectations as parents, but instead better at meeting their expectations” (Hilda, interviewed May 27, 2017). Again, these dual conceptualizations were quite distinct. Her professional understanding emphasized the biomedical, disordered nature of autism. However, her personal understanding implemented neurodiverse metaphorical language to describe autism as ‘learning to live to a different rhythm’. 81 To Know and To Understand In this chapter, I have described themes that emerged in my analysis of how parents and providers conceptualized autism. Parents whom I interviewed tended to utilize metaphor to elucidate a neurodiversity model of autism. Providers tended to use biomedical, deficit-focused models of autism. While a minority of providers (n=4) utilized metaphorical language to describe an understanding of autism that casts autistic children as ‘trapped’ or ‘locked away’ by their neurological disability/difference, many other providers deployed metaphor to highlight the various ways they themselves as providers grow and learn from their autistic patients. It is possible that the differences in how parents and providers convey their conceptualizations of autism may prompt parent-provider communication difficulties. In my interview with Ramona, mother of two autistic sons and not an autism treatment/care professional (she is a professor at a local college), she described how she explains autism to other parents in arroz y habichuelas, a Puerto Rican idiom which literally translates to ‘rice and beans’ but when translated idiomatically means ‘in plain, easily understood language’: “When parents ask me to explain it, I explain smoothly and not very technically. Because when you go ask a medical doctor they go on and on with philosophical and scientific language and the parents are left looking like ((Ramona adopts a vacant expression with mouth ajar to mimic a confused expression)). I tell them the way we Boricuas do, en arroz y habichuelas [in rice and beans], so they can understand me completely” (Ramona, interviewed May 25, 2017). These types of differences between parental and provider understandings of autism have been examined in the literature. In her article exploring the relationships between parents of autistic children and autism professionals working with these children in India, Rajani Ramachandran writes “Parents reasoned that though they can provide valuable information as they know their child, it is the professionals with their expertise in autism who understand their child better” (2020:1528, emphasis by author). Considering this in the context of this study, it is 82 a possibility that what Puerto Rican autism parents ‘know’ about autism is best relayed utilizing metaphorical language which may be creatively deployed and individually tailored to their own autism family experience. By doing so, this ‘knowing’ of autism facilitates their role as not only a giver of unconditional love as a parent, but also their role as an advocate for the child within a world that frequently stigmatizes their autistic children and their atypical behavior (for further discussion on stigma, see Chapter 8). On the other hand, autism treatment/care providers in Puerto Rico may utilize biomedical deficit-based conceptualizations and medical definitions to relay how they ‘understand’ autism as a neurodevelopmental disorder. This is a near requirement within the medical arena because when “…illnesses are defined solely through culturally specific definitions no grounds exist for establishing a concept of illness that transcends different contexts…comparison is only possible if something constant serves as a point of reference to observe meaningful variation” (Horwitz 2002:9). As professionals in the field of autism treatment and service provision, it is possible that their conceptualization of autism must be firmly rooted in biomedical constructions in order to ground treatment goals on a tangible scale of development. However, the providers interviewed for this study also emphasized how they themselves personally benefit from working with the autism population in terms of self-growth and learning. It is possible that this line of autism conceptualization facilitates the continued investment and care from autism treatment/care providers on the island, as they and autism families alike attempt to navigate the challenging, inadequate Puerto Rican health and educational infrastructure (for further discussion on infrastructure and resource navigation, see Chapter 8). 83 Nos Tocó: Autism conceptualization and empowered fatalismo In this next section, I turn my focus to another theme that emerged in my analysis of parental autism conceptualization in Puerto Rico. In my interviews with parents during my field work (n=35), several of these parents (n=8) utilized the common phrase ‘nos tocó’ in their response to ‘In your own words, what is autism?’ and/or a permutation of the question ‘What do you think caused your child’s autism?”. In Puerto Rico, ‘nos tocó’ is a common idiomatic phrase that one might hear either as a lament from a disappointed driver who pops their tire or as a joyous exclamation from winning gamblers at Puerto Rico’s famous Fiestas Patronales [Patron Saint Festivals]. A translation of nos tocó must, like all idioms, be informed by the context in which it is uttered. In a daily secular context, nos tocó may be translated as ‘our luck of the draw’ or ‘our lot in life’. This idiom may also have a religious connotation of ‘our Fate from God’ or ‘our Destiny’. While this phrase may on the surface appear as a manifestation of fatalismo [fatalism] and a surrender to the powers of Fate and Fortune, I argue that contextualized analysis of this phrase reflects an empowered version of fatalismo. While these parents conceptualize an autism diagnosis as outside of their control, this did not prompt resignation but rather promoted empowerment and action on behalf of their autistic children. Defining ‘Fatalismo’ in Health Care Fatalism may be defined as “…the propensity of individuals or groups to believe that their destinies are ruled by an unseen power or are played out inevitably rather than by their will” (Maercker et al 2019). This philosophical outlook may carry neutral connotations that index an external locus of control that is neither positive nor negative (Maercker et al 2019) or it may carry pessimistic connotations of an inevitably poor outcome (Scheier and Bridges 1995). There are also forms of fatalism that are negotiable, where the locus of control may be partially split 84 between the individual and an unseen Higher Power that may alter fate if a proper deal is struck (Au et al 2011). Within the context of health care, “…fatalism usually is conceptualized as a set of pessimistic and negative beliefs and attitudes regarding health-seeking behaviors, screening practices, and illness” (Abraído-Lanza et al 2007). Fatalismo is a common Latino cultural construct (Abraído-Lanza et al 2007). Research has investigated whether the documented under-utilization of health screening, preventative health measures, and mental health services by Latinos in the United States were associated with the commonly held beliefs in fatalismo within these Latino communities (De Jesus and Xiao 2014, Rosales and Calvo 2017, Anastasia and Bridges 2015, Umezama et al 2012, and Hunt, Valenzuela, and Pugh 1998). Studies have shown that fatalismo in Latino communities has been associated with decreased utilization of psychiatric care services (Rosales and Calvo 2017) and with decreased utilization of cancer screening services (De los Monteros and Gallo 2011). However, the authors of these studies have urged readers to contextualize these findings and not overemphasize the role of fatalismo at the expense of the consideration of other relevant sociocultural factors such as socioeconomic status and health literacy. In their article ‘Fatalismo Reconsidered’, the authors write: “Some caution should be exercised in reaching conclusions concerning the health ramifications of fatalistic beliefs, especially when developing health-related messages, programs, and interventions. […] From a public health perspective, the focus on fatalism—without fully capturing the cultural nuances of this concept or recognizing the structural and other social constraints on the health and behaviors of Latinos—could be problematic” (Abraído-Lanza et al 2007). Researchers have proposed that cultural beliefs in fatalismo may result in decreased utilization of autism treatment and support services by Latino autism families because “…they may believe they can do little to alter their fate” (Mandell and Novak 2005). Despite this claim, little research has been conducted examining the role of fatalismo in the context of Latino autism 85 families. One study found that fatalistic beliefs were correlated with increased guilt expressed by Latina mothers upon their child’s autism diagnosis as compared to White mothers (Lopez et al 2018). Another pilot study’s findings suggested that increased religious beliefs, including fatalismo, in Latino communities were correlated with decreased knowledge of ASD and ASD- related interventions (Colbert et al 2017). However, again these authors urge readers to not leap to firm conclusions when they write “Although our results suggest a relationship between religious beliefs and ASD knowledge, future studies should examine fatalism and other aspects of religiosity more comprehensively in order to clarify relationships between religious beliefs, health care knowledge, and utilization” (Colbert et al 2017:161). Nos Tocó: Parental perspectives As mentioned earlier, ‘nos tocó’ is a common idiom used in Puerto Rico that indexes the cultural construct of fatalismo in a neutral interpretation of fatalistic beliefs as opposed to pessimistic beliefs. When one says ‘nos tocó’ in Puerto Rico, it is understood to mean that the situation was outside of one’s control and was the result of either universal randomness or, in a religious connotation, the hands of God. During my interviews on the island, several parents (n=8) and treatment/care providers (n=3) utilized the idiomatic phrase ‘nos tocó’ when describing their conceptualization of autism and/or their lives as autism families. In my interview with Alex, he utilized a sports metaphor to convey his understanding of why his twin boys were ultimately diagnosed with autism: “I compare it to soccer. Sometimes, there are matches that end in a tie and finish with a shoot-out, each team gets 5 shots. 50% of getting the ball in is your ability as a player, and the other half is luck…and that other half of luck, that’s what we got. It is not something good or bad…it’s just nos tocó” (Alex, interviewed May 29, 2017). Here, Alex described his conceptualization of autism as neutral, as ‘not something good or bad’. His 86 understanding of autism identifies that a significant part of what may have caused his sons’ autism was not under his or his wife’s control—it was simply luck. During my interview with Diego, father of a 13-year-old autistic son, his response to my question ‘In your own words, what is autism?’ emphasized an external locus of control when considering autism. After I asked this question, Diego sighed deeply and responded: “Wow. Well, I believe that it is a condition that can happen to anybody, any child or adult […] I see autism as a condition that he or any other child could have had and me tocó a mi [it was my turn], it’s that well, ¡nos tocó! and that’s what we have to work with. And we will, if God wills it” (Diego, interviewed August 25, 2019). Like Alex, Diego pointed to random chance in his understanding of his son’s autism diagnosis. He also noted that he will continue to ‘work’ with his son’s autism—seeking autism treatment services, advocating for his son—for as long as ‘God wills it’. His beliefs regarding his and his son’s futures then are intertwined with fatalismo, a belief that forces greater than his own are involved in his son’s prognosis. As a last example, some parents’ use of ‘nos tocó’ carried traditional religious connotations that conceptualized autism as a manifestation of Divine Providence. Hilda spoke of God’s purpose in her conceptualization of autism here: “I live day in and day out with autism personally and professionally…I always say that God has a purpose for everything and well, nos tocó with autism. He sent me a child with special needs. He sent him to a mom that was prepared professionally. But it is not the same to work with a child as to have one yourself 24 hours a day…the process takes time but you adapt…We have overcome a lot and we will keep overcoming until God decides. I will get however far God permits and that’s how it will be...however far God permits me to go” (Hilda, interviewed May 27, 2017). In their analysis of mothers’ reactions and adaptions to their autistic child’s diagnosis, Lopez et al write “The process of adjusting to the child’s diagnosis is embedded in a cultural context and shared understandings of illness” (2018:41). For Hilda, fatalismo and a belief in God’s purpose 87 were essential to both how she understands autism and how she has adapted to life as part of an autism family, including how much she has done and will be able to do to ensure her son’s future. Empowered Fatalismo Published research has proposed that cultural beliefs such as fatalismo may result in the delay of Latinos seeking early health care services because they may believe that there is little to be done to alter their fate (Flores et al 1999). This concept has also been applied to Latino autism families and has been proposed as a potential contributor to delay in autism diagnoses and decreased utilization of autism treatment and interventions services within Latino communities (Mandell and Novak 2005, Blanche et al 2015). There has been a call within the literature for increased research regarding the effect, if any, fatalismo beliefs have on the utilization of health services (including autism services) by Latino communities as well (Abraído-Lanza et al 2007, Lopez et al 2018, De los Monteros and Gallo 2011). Throughout my interviews with parents of autistic children in Puerto Rico, beliefs of luck, fate, and fatalismo did emerge in parental conceptualizations of autism. However, my findings did not suggest that these beliefs impeded or delayed these autism families from seeking treatment and intervention services for their autistic children. In fact, my findings suggested that, within the autism families with whom I spoke, it was quite the opposite. Upon analysis of my interviews with parents who expressed fatalismo-related beliefs in their conceptualization of autism (n=8), all of these parents would go on to say that they have and will continue to pursue any and all possible treatment and interventions to facilitate the health, development, and happiness of their autistic children. Diego, the father I quoted earlier, 88 described to me how he would spend upwards of 8 hours driving his son to his various therapies and doctor’s appointments in a single weekend. While Hilda, the mother I quote above, does attribute her son’s autism as part of God’s purpose, she is not resigned to a pessimistic fate. On the contrary, Hilda told me “In general terms, it has been a difficult process for me as a mom…but I don’t put limits on myself and I don’t put limits on my son for anything in the world. He can do anything! And if there is an obstacle, we find alternatives. We keep looking” (Hilda, interviewed May 27, 2017). Hilda’s response conveyed feelings of empowerment and positivity in the belief that she was fated by God to be her son’s mother, to be able to take on the task of parenting a neurodiverse child in a neurotypical world. Other studies investigating the role of cultural belief and spirituality within Latino autism families have similar findings, “…parents believed that their child’s disability was a sign from God and endorsed a positive framing such as believing that the child was a blessing, or that God choose the parents as especially able to care for the child” (Salkas et al 2016:52-53). Additionally, throughout my fieldwork I spoke with parents of autistic children on the island who expressed conceptualizations of autism that firmly separated beliefs in fatalismo and God from the day-to-day realities of caring and advocating for their autistic children. For example, I interviewed Magdalena, mother of a 3-year-old autistic son, in her living room where a large carved wooden cross hung behind me on the wall. When we spoke about her conceptualization of autism and her son’s future, she told me “As a Christian, I believe in the Lord and in God. He has the capacity to heal and to do what He would like. […] but medically speaking, I believe that there are delays and such that affect them neurologically from a young age…and early intervention like speech therapy is needed” (Magdalena, interviewed August 27, 2019). In my interview with Naomi, mother of a 19-year-old autistic son, she told me “Science 89 itself says that it is a condition without a cure. Those who are very religious and faithful believe that there could be a miracle. Now, I’m not saying that I do not have faith—because I do—but I believe that maybe there are more worthy miracles out there than this one” (Naomi, interviewed May 18, 2017). My findings regarding fatalismo-related beliefs expressed by the interviewed parents of autistic children in Puerto Rico support the recommendation to consider that “…negative presumptions ascribed to fatalistic implications of belief in Divine control need to be critically reappraised, especially when such skepticism is applied to medically underserved populations of diverse racial/ethnic and cultural backgrounds” (Umezama et al 2012:31). I argue that the parents who expressed fatalismo-related beliefs were far from mere bystanders who were resigned to their and their child’s fate. They did not wait with idle hands for the outcome of their fate; rather, these parents expressed feelings of empowerment and were extremely active in pursuing medical and educational treatment and interventions for their autistic children. These findings contradict the proposed notions that fatalismo results in decreased utilization of health services by Latino communities. While these findings are preliminary, future research may be conducted to further examine the roles of beliefs in Fate and Fortune play within Latino autism families and communities to avoid misconceptions and presumptions regarding any impact cultural fatalismo may have on the health and development of Latino autistic children. Conclusion In this chapter, I have explored how parents of autistic children and autism treatment/care providers in Puerto Rico conceptualize autism as a neurodevelopmental disorder and lived experience. I began this chapter by focusing on the role of metaphor in autism conceptualization by parents and providers. I discussed how parental responses to the question ‘In your own words, 90 what is autism?’ often elicited answers that deployed creative metaphorical language to convey a neurodiversity model that conceptualizes autism as neither inherently positive nor inherently negative, but as simply neurological difference. I discussed how autism treatment/care providers answered this same question with biomedically based, deficit-focused conceptualizations of autism. However, I also noted how many providers would elaborate upon those definitions with descriptive, metaphorical language to emphasize the many benefits they themselves have received from working with the autism population on the island. Next, I described the unique perspective of a small subset of parents who are also professional autism treatment/care providers and how these perspectives demonstrated dual conceptualizations of autism incorporating both biomedical and neurodiversity models. I then synthesized this analysis with a discussion of how each of these cohorts, parents and providers, may have adopted a conceptualization of autism that suits their distinctive needs and roles in the lives of their autistic children and patients. In the next section of this chapter, I turned my attention towards examining how parental conceptualizations of autism are often interwoven within a framework of fatalismo [fatalism], or the idea that fate is predetermined and cannot be changed (Lopez et al 2018). I found that parents frequently used fatalism-related language, such as the idiomatic phrase ‘nos tocó’, to describe their reasoning as to why their child was diagnosed with autism. While research has suggested beliefs in fatalismo may contribute to decreased utilization of health care services by Latino autism families (Mandell and Novak 2005, Blanche et al 2015), I argued that fatalismo as described by these parents is not a reflection of Latino’s resignation to the whims of destiny but rather is a symbol of parental empowerment. 91 In the next chapter, I shift from examining how parents and treatment/care providers in the Puerto Rican autism community understand autism towards exploring the theories expressed by this community regarding what might cause autism. By exploring autism causation theory in this local context, I shed light on how these theories may carry real-life implications for the health and well-being for Puerto Rican autism families. 92 CHAPTER 6: Searching for the ‘Trigger’: Autism Causation Theory and Parental Vaccination Decision-Making 93 Field Note Entry, May 18, 2017: After a kind neighbor gave me classic Puerto Rican driving directions, “Keep going until you think you’ve gone too far. When you see the mango tree with a hole in it, make a left”, I found Lourdes, mother of a 5-year-old autistic son, waiting for me on her front porch. With views of the mountains, we sat down on plastic chairs and began our hour-long interview. Afterwards, Lourdes offered me a quick cup of coffee and asked, “Would you like to see a video of my son before he was autistic?”. She pulled up a video of Frankie at age two. Frankie was sitting in a high-chair giggling and Lourdes asks him, ‘Who am I?’. He looks her in the eye and says ‘Mama!’. Lourdes then asks, ‘And who is that?’ pointing to the camera. ‘Papi!’ Frankie shouts and everyone laughs. When the video ends, Lourdes leaned back in her chair and sighed. She told me her son was diagnosed with autism a year later, and her husband left them a year after that. “It was too much for him” Lourdes told me, “and sometimes, it feels like too much for me too.” We sat quietly for a while, sipping coffee while the song of the coquí, a frog only found in Puerto Rico, filled the silence. Abruptly, Lourdes turned to me and said quietly “I love my son, but something happened to him. Something happened that triggered this autism in him. Something happened to my son and he will never be the same. Something happened to my son” (Lourdes, interviewed May 18, 2017). Figure 10: View from Lourdes’ Porch Añasco, PR (Photo by Author) When Lourdes told me quietly on her front porch that ‘something happened’ to her son Frankie, that ‘something’ is not referring to autism. Lourdes made clear in our interview that she understood autism as a developmental disorder that affected her son’s life in many ways. Her question was not ‘What is autism?’, as was discussed in the previous chapter, but rather ‘What 94 causes autism?’—what is the ‘something’, as Lourdes called it, that triggered the series of events in young Frankie’s body that would ultimately manifest itself in what we call autism? Before we begin it is important to reiterate that autism presents a quandary for our modern society, in which we increasingly rely on biomedicine to provide answers to our questions concerning the workings of the mind and body. Though many theories have been put forward throughout the years, the biomedical and scientific communities as of yet have no firm answers to offer autism families around the world to explain what definitively causes autism (Lai et al 2014, Lord et al 2018). In the absence of a definitive biomedical anchor point, parents are left to piece together their own personal theories as to the nature of the mysterious ‘something’ that caused their child to develop atypically. In this chapter, I focus on autism causation theories as described to me by parents and treatment/care providers within the autism community of Puerto Rico. These theories were broad and incorporated a multitude of potential factors that were thought to contribute to the ‘triggering’ of autism. Throughout my interviews, I came to find that surrounding these theories was an air of uncertainty—captured in the frequent shrugging of shoulders and shaking of heads elicited from parents when I first ask the daunting question: ‘In your opinion, what might cause autism?’. Anthropologist Sharon Kaufman describes this uncertainty as rendering autism a ‘mutable object of knowledge’, writing “Because it is a mutable object of knowledge, with unknown specific etiology, and because the well-being of children and families is at stake, autism has become a pivotal figure in conversations about the truth claims of biomedical science and about what constitutes evidence and credible knowledge” (Kaufman 2010:12). I discuss in this chapter how for many parents and some providers whom I interviewed for this study, one potential ‘trigger’ for autism was considered to be vaccinations. The potential 95 link between autism and the measles, mumps, and rubella (MMR) vaccine was first put forth in a now-retracted paper (Wakefield et al 1998). Since then, much literature has been published that has found no credible link between vaccinations and the development of autism spectrum disorders (Jain et al 2015, DeStefano and Shimabukuro 2019, Doja and Roberts 2006, Taylor et al 1999, Madsen et al 2002, DeStefano et al 2004). However, it is neither within the scope of this dissertation nor my aim as author to speak to the validity of any autism-vaccination claims. I simply do not have the data for that and have no inclination to obtain said data—I believe the already published literature speaks for itself. Rather, as an anthropologist, it is my aim to explore the perspectives of parents of autistic children and autism treatment/care providers in Puerto Rico regarding their experiences and beliefs concerning autism causation. By examining these beliefs and the various factors that inform these beliefs, I aim to shed light on how key components of the lived autism family experience, like beliefs as to what may cause autism and how those beliefs may shape future healthcare decisions, are molded by the local Puerto Rican politico-economic, historical, and sociocultural context in which the Boricua autism family experience is lived. Multifactorial Autism Causation Theory I begin this section with a discussion of my findings regarding parental and provider responses to my question, ‘In your opinion, what causes autism?’. I asked this question of parents (n=35) and autism treatment/care providers (n=32) and received a variety of responses. I coded these responses and separated them into categories. First, I divided these responses into ‘single factor’ vs ‘multi-factorial’ causation theories. Of the 67 responses, only 3 responses (all from the parent cohort) could be coded as a single-factor theory. As will be discussed later in this chapter, these 3 parents believed vaccines to be the sole cause of their child’s autism. I then 96 coded the remaining 64 responses by separating the causation theories offered by each subject into two broad categories of ‘genetic’ and ‘environmental’ causes. All 64 responses contained at least one factor from each of these categories. Therefore, I found that the great majority of subjects interviewed for this study believed the cause of autism to be multifactorial in nature. Currently, there is no single proven scientific cause for autism. The medical literature’s general stance on autism causation may be summarized as “Autism is now thought of as a set of neurodevelopmental conditions, some of which can be attributed to distinct aetiological factors, such as Mendelian single-gene mutations. However, most are probably the result of complex interactions between genetic and non-genetic risk factors” (Lai et al 2014:896). When asked about their beliefs regarding autism causation, most Puerto Rican autism community members I interviewed indicated a belief that is largely aligned with the stance that autism is the result of multiple factors both genetic and environmental in origin. Rocio, mother of a 21-year-old autistic son, provided a response that reflects what many of these parents said about autism causation: I have read so much, but nothing satisfies me. There is the version about genes, the vaccines, the version about environmental contaminants, and the ‘good’ version. I don’t know if you have read about the origins of autism…saying it’s the mother’s fault that traumatized the child… But no, none of that satisfies me. I don’t know why some people get autism. There is nothing official (Rocio, interviewed May 22, 2017). While Rocio’s response touched on many of the potential theories that were described to me by parents and providers in Puerto Rico, her ideas were tentative and uncertain. Subjects most frequently described their genetic-based ideas of autism causation as “running in the family” or “inherited through generations”. Parents sometimes would support this theory by describing other members of the family who were either formally diagnosed with autism or displayed characteristics that could today be associated with autism. For example, Michelle, mother of a 21-year-old autistic son, described a distant relative as an example to 97 support the hereditary nature of autism, “They say it could be genetic… on my ex-husband’s side…he had an aunt who was diagnosed with intellectual deficits and mental retardation, but she was very typical of a person with autism” (Michelle, interviewed May 30, 2017). Miranda, mother of an 11-year-old autistic son, described her theory of genetic causation as ‘from the womb’; “Well, many call it a disease… but I find it to be a condition that is developed from when they are in the womb. Really from the beginning, in their genes in the womb” (Miranda, interviewed May 21, 2017). Only one of the 67 interviewed subjects pointed to a specific example of genetic causation. Unsurprisingly, it was during my interview with Cristian, a geneticist, in which he discussed at length the potential role various chromosomal mutations and single-nucleotide polymorphisms (SNPs) might play in the development of autism. Along with genetics, parents and treatment/care providers also pointed to the role of the environment in autism causation. Many of these theories were quite broad. For example, Trisha, an equine therapist, told me that “There has got to be some environmental factor in my thought. I don’t know if it is the chemicals in our food, the chemicals in our air or the water…I think something in our environment is contributing to it” (Trisha, interviewed August 26, 2019). Others provided more concrete examples of what they believe may form part of Puerto Rico’s ‘exposome’, or environmental factors that may contribute to the development of autism spectrum disorders (Hertz-Picciotto et al 2018). Frequent environmental causes suggested by parents and providers whom I interviewed included contaminated water, pesticides, and genetically modified foods. In my interview with Ana, a clinical psychologist, she attributed the high rates of autism on the island in part to environmental contamination: “I think we have a very high autism prevalence because our bodies of water and land are highly contaminated. They contain pesticides, metals, etc. It is most probably because our children have deficiencies in their development and that part of that population has 98 genetic vulnerability that interacts with an environmental component, and it manifests in autistic behavior” (Ana, interviewed May 29, 2017). In my interview with Ramona, mother of two autistic sons, she described a conceptualization of autism that speaks to her theories of environmental causation. She told me that it is her belief that the increasing rates of autism may be a type of defense mechanism for the planet. When I asked her to explain further, she said: “Autism is human evolution…and why do I think that? Because our planet is alive and we are killing it. The planet itself always, from the beginning, has made it so its inhabitants had what they needed. That’s my theory, that the planet is growing individuals that are thinking about it. The majority of autistic individuals are very tuned into nature…they are sensitive to life. I think the planet is trying to tell us that we need more human beings who will care about the planet...” (Ramona, interviewed May 25, 2017). Parental and provider responses regarding environmental exposures contributing to the development of autism demonstrated that it is possible that these theories were influenced by historical and contemporary political factors within the local context of Puerto Rico. Environmental contamination has been a major concern on the island for decades and the subject of much public debate as the Puerto Rican government and citizens have had to weigh economic profit against the potentially irrevocable damage to the island’s natural resources and land (Dietrich 2013, McCaffrey 2011). A major flashpoint in this debate concerns the 60+ years’ use of Vieques, a small island municipality of Puerto Rico, by the United States military as a test site for landmines, uranium weapons, Agent Orange, and napalm (Klein 2018, Duchesne Winter 2007). Another flashpoint concerns the public contamination by pharmaceutical corporations and their many factories in Puerto Rico (Dietrich 2013). In the 1990s, approximately 8 out of 10 of the most popular prescription medications in the United States were manufactured in Puerto Rico, which resulted in the well-documented heavy pollution of the local water and lands (Quiroga 1997, Dietrich 2013). 99 While these pharmaceutical corporations, who were taking advantage of significant tax incentives and the low wages commanded by Puerto Rican workers, provided short term economic benefits for the island, their legacy is mixed. As anthropologist Alexa Dietrich writes “This economic development of the island has had a significant impact on environment and health related ideologies…these dynamics have created a situation in which Puerto Ricans were generally willing to trade short-terms economic gains for the long-term negative potential of serious pollution” (2013:16). In my interview with Renata, mother of a 3-year-old autistic son, she told me: “The evidence about the cause of autism is so ambiguous…I think sometimes that it is easier for the government to not know than to know. That sometimes it is more convenient to not know things than to know things. Is it an accident that this is so bad in Puerto Rico and our water and land has been so damaged? And so, things stay the same. Remember that this is an enormous industry. Look, you know how our economic system is very complicated, who would dare topple that so easily or to question it?” (Renata, interviewed May 30, 2017). In summary, a multifactorial concept of autism causation involving genetic and environmental components was the predominant theory within the community of parents and providers whom I interviewed for this study. During my interview with Marco, a clinical psychologist and surf therapist on the island, he summed up his personal beliefs regarding autism causation theory quite nicely when he responded to my question ‘In your opinion, what might cause autism?’ with “Oh, if I knew the answer to that question! I would love that. As a clinician, I believe that there are strong genetic and environmental factors. And obviously, we know that the environment can alter the genetics. And so, what came first, the chicken or the egg? We just don’t know!” (Marco, interviewed May 13, 2017). Searching for the ‘Trigger’ In addition to the theme of a multifactorial nature of autism causation, I found another common theme was the idea that there must be a ‘trigger’ that detonates this combination of 100 multiple factors in children to cause autistic behavior or an autism phenotype. This trope of a ‘trigger’ for autism has frequently been used within the literature, a common explanation of multifactorial causation in lay terms being that the genes ‘load the gun’ and the environment ‘pulls the trigger’ (Solomon and Chung 2012). Several ‘triggers’ for autism have been proposed by researchers including but not limited to mitochondrial dysfunction (Balachandar 2020), the use of analgesics (Schultz 2009, Bauer and Kriebel 2013), infection with Mycobacterium paratuberculosis (Dow 2011), and environmental precipitation rates where the autistic child lives (Waldman et al 2008). Throughout my fieldwork, parents and treatment/care providers alike mentioned the concept that some unknown factor or event ‘triggered’ the development of autism in their child or patient. In my interview with Janet, mother of a 14-year-old autistic daughter, she described her personal beliefs about what may have caused her daughter’s autism: “I think there is a genetic relationship and something out there ((Janet points towards outside)) is a trigger that sets it off. A trigger, maybe the environment or something…I know cases where children were completely normal in their development and out of nowhere there was a trigger that changed their behavior” (Janet, interviewed August 29, 2019). During my interview with Rita, a speech pathologist, she extended the notion of a trigger to include ‘the mom’ and a subsequent impact on fetal development, “I think there are triggers…there are many factors and we cannot determine what it was specifically. Environmental, a personal situation, maybe something that happened to the mom? We do not know” (Rita, interviewed May 18, 2017). During my interview with Gloria, a clinical psychology doctoral student working in the autism community, she expressed a belief that one of these potential ‘triggers’ may be vaccinations. She told me, “I have read a lot about it. I know there is influence from vaccines when they are little, what they eat too—like the hormones and things…it makes me think that 101 maybe it is triggered by the food we eat or the vaccines” (Gloria, interviewed May 17, 2017). Similarly, Mariela, mother of a 16-year-old autistic son, described her personal theories regarding autism causation as a complex scenario involving a balance of genetic and environmental factors that set the stage for vaccines to ‘trigger’ autism. She explained: “I think there is genetic predisposition… a mix of inheritance and contamination that affects genes, what we eat, what we breathe…the trigger is the vaccine […] Depending on the person and their genetics, vaccines affects them more or less…It is my conclusion that the vaccines made it worse. They were the trigger” (Mariela, interviewed May 30, 2017). Vaccines as ‘Trigger’ In this next section, I explore parental perspectives and experiences regarding vaccines as a ‘trigger’ for autism within the autism community of Puerto Rico. I quickly realized while in field that the subject of vaccines within the autism community is a complicated one that required significant nuance. There was no consensus in the perspectives of parents and treatment/care providers in this community on the topic of vaccination. Parental and professional opinions were highly varied. Many explicitly noted in our interviews that their personal beliefs regarding any link between autism and vaccines were specific to their own personal experience. This speaks to the complex nature of this controversy—it is not black and white. I did not interview a single parent who viewed vaccines as inherently harmful or unnecessary. Rather, my findings demonstrated that these parents, left without any firm cause of their child’s autism or strategies to prevent their future children from developing autism, were placed in the position where they want to make the best choices for their children with the knowledge that they have. In my interviews with parents of autistic children in Puerto Rico (n=35), the subject of vaccination came up every time. Some parents were dismissive of the notion that vaccines could cause autism while other parents were highly suspicious of and/or attributed their child’s autism completely to vaccinations. Others still were uncertain of the degree to which vaccinations were 102 involved in their child’s diagnosis, but believed vaccines had ‘something to do’ with this developmental disorder. After coding parental responses as to whether they consider vaccinations as a factor contributing to or ‘triggering’ their child’s autism, I was struck by how evenly split the subject pool was on the topic. Table 4 below depicts the results of this analysis: Table 4: Perspectives of 35 Parents Interviewed on the Role of Vaccines in Autism Causation Participants Perspective on role of vaccines in autism causation Does not attribute autism causation to vaccines Considers vaccines to be one of several contributing factors to autism causation Attributes autism causation entirely to vaccines Number Percentage 35 18 14 3 - 51% 40% 9% In my interview with Naomi, mother of a 19-year-old autistic son, she described in detail how her son’s behavior and health changed abruptly coinciding with the timeline of MMR vaccination. Naomi conceptualized autism as a ‘physical injury’ and is one of 3 parents whom I interviewed for this study who attributed her son’s autism entirely to vaccines: “In my case, my son was normal! … It was in that precise moment of vaccination when his development was changed…my son changed. For me, it was a physical injury. […] My son was vaccinated and two weeks later began the problems. And it was like he was going in reverse. He lost actions, lost his vocabulary, lost his eye contact. He had seizures. He had a fever and they never discovered the cause of the fever. […] In that moment, I didn’t put it together. There wasn’t so much information available. But well, that was when he was around 1 year old…And by the time he turned two, he was no longer the son I had given birth to” (Naomi, interviewed May 18, 2017). In my interview with Rocio, mother of a 21-year-old autistic son, she described a similar experience of watching her son’s development ‘go in reverse’ following MMR vaccination. She described to me that, “The vaccines at two years old, the MMR combo. After that one, it was like his mouth fell off! The little that he spoke was taken away afterwards. It gave him a fever and the regressions started there” (Rocio, interviewed May 22, 2017). I interviewed Tony, father of a recently diagnosed 3-year-old autistic son, on the beach after his son’s surf therapy session. While spoon feeding his son a typical Puerto Rican meal of 103 arroz con gandules [rice with pigeon peas], Tony told me “At 6 months old, we have it recorded on our phones, he was repeating the word ‘mama’... Then they gave him the vaccines and they triggered it…we then started to notice a change in him. He stopped talking…we noticed after those 7 vaccines, there was something that was not as it should be” (Tony, interviewed August 24, 2019). Tony lamented that he did not have the video with him at the time, but insisted that his son, now functionally non-verbal, had once been able to call for his mother. While parents like Rocio and Tony suspected vaccines of ‘triggering’ their children’s autism, some parents were adamant that vaccination has nothing to do with autism. For example, Beatriz compared her autistic son to her two other neurotypical children to explain why her personal experience has prompted her to dismiss a vaccine causation of autism: “They talk about those vaccines. Well, I have 3 children and they were all vaccinated on schedule and only one ended up with autism. My friend has five sons and only one has autism…they were all vaccinated at the same time. So, there’s your answer in my opinion” (Beatriz, interviewed May 19, 2017). In my interviews with Ramona and Lola, both mothers shared a similar conclusion to Beatriz. However, they came to their conclusions through a different path. Unlike Beatriz who has only one autistic child, both Ramona and Lola have two autistic sons each. Both dismiss an autism causation theory based on vaccines because, despite not vaccinating their younger sons, all of their children have autism diagnoses. Ramona told me: “Everything affects a baby’s development, including vaccines. I don’t blame vaccines though because…the older one was vaccinated and the younger one was not. […] So, I can’t go around singing about how vaccines cause autism because then explain to me how my younger son has autism? (Ramona, interviewed May 25, 2017). Lola shared a similar experience: 104 “I assume it is genetic, and why do I say that? Because we vaccinated my eldest and not the little one. And both of them are autistic. […] With the little one, I did not permit any vaccines and it was a natural birth…With the older one, I had an epidural and all of the vaccines. But I decided not to with my youngest out of fear that he would come out autistic too. And well, he is autistic anyway” (Lola, interviewed August 27, 2019). When discussing the topic with Diego, father of a 13-year-old autistic son, he does not use personal experience to support his disbelief in the theory that vaccines ‘trigger’ autism. Rather, he viewed parental belief in this theory as a form of justification and self-consolation. He told me that blaming vaccines for a child’s autism is “… a form of justifying their child’s situation…only a justification to console themselves about their child having autism…That is my opinion and I respect theirs, but I think that vaccines have nothing to do with autism” (Diego, interviewed August 25, 2019). Parents like Diego dismissed outright the possibility of vaccines causing their child’s autism and other parents like Naomi attributed their child’s autism entirely to a ‘physical injury’ that resulted from vaccination. Between these two poles, there are several parents who remain uncertain. Kaufman argues that this uncertainty and doubt is characteristic of this type of controversy, writing “Doubt sustains and enables its own persistence. The many means for knowledge production about vaccines and autism becomes, also, technologies for the maintenance of doubt” (2010:15). In my interview with Alex, father of twin autistic sons, he said to me, “The truth is…after they were given the vaccines, then we started noticing changes in them. […] I don’t want to take a stance about whether or not it was the vaccines because I know vaccines are necessary—even though I also know there are economic interests from the pharmaceutical companies that are creating them” (Alex, interviewed May 29, 2017). 105 Alex was not the only parent who explained to me that his doubts regarding vaccine safety partially spring from suspicion of big industry such as pharmaceutical companies. Magdalena, mother of a 3-year-old autistic son, described her doubts as well: “Truly, the subject of the vaccines scares me a lot but I, as a nurse, continue to feel that they are necessary to control epidemics and such. I do have something like a doubt or partially formed belief that a child can have a weakened immune system and that today, the vaccine schedule is an assault on the immune system of the child. […] There are no studies that confirm that vaccines provoke autism, but I also have a theory that these studies do not exist because health is unfortunately a business. And if I have the money, if I am the one who manages vaccines or the medications that they sell and I am the one who is benefitting, then I am not going to pay for a study that is going to affect me poorly as a business” (Magdalena, interviewed August 27, 2019). Lastly, in my interview with Mona, mother of a 10-year-old autistic son, she spoke about her personal vaccine safety doubts as stemming from her distrust of pharmaceutical companies: “I have to have faith in what my instinct as a mother is telling me to do. Some say, ‘there are no studies to corroborate that vaccines cause autism’. Well, the same could be said for them not wanting to corroborate it! They don’t want to publish, because there are great interests that are against them publishing those studies. For example, the pharmaceutical companies. The pharmaceutical industry in Puerto Rico does not have patients, they have clients… they are the ones who created the vaccines and it is convenient for their industry that they are also the ones who study if they are safe” (Mona, interviewed August 30, 2019). Pharmaceutical corporations, as an extension of biomedical authority in our global biomedicalized community, maintain significant authoritative knowledge and power over what is considered to be ‘truth’ and who can or cannot question that ‘truth’ (Clarke et al 2003, Phillips 2006, Matheson 2008). Stories like those shared by Alex, Magdalena, and Mona illustrate that doubt in vaccine safety is often rooted in much larger concepts like faith and corporate greed, reaching much farther than a single needle in a vial. As Silverman writes “Arguments about vaccines have never been about the technique alone. They have also reflected anxieties about entrusting the health of one’s family to authorities” (2012:200). 106 ‘They Act Like Its Holy Water’: Parental perspectives on vaccination decision-making In my examination of the responses of parents who viewed vaccination as a ‘trigger’ for autism (n=17), several noted that this resulted in a doubt or distrust in the safety of vaccines and influenced their vaccination decision-making for their children. For example, Cecilia, who has three children: a neurotypical 11-year-old son, an autistic 6-year-old son, and a neurotypical 2- year-old daughter, described how this doubt caused her to feel ‘scared’ when deciding whether to vaccinate her children, “I have felt scared to give them vaccines. I gave my daughter the first ones and when the 1-year vaccines were due, I got really scared—but I ended up giving them to her. I don’t know which is better honestly, the cure or the disease” (Cecilia, interviewed August 24, 2019). In her text ‘On Immunity’, Eula Biss speaks to this tenuous situation of a parent experiencing this doubt when she writes, “Immunity is a myth…no mortal can ever be made invulnerable. The truth of this was much easier for me to grasp before I became a mother. […] I found myself bargaining with fate…asking what disease we would give our child for prevention against another—a parody of the impossible decisions of parenthood” (Biss 2014:5). For Monica, mother of a 15-year-old autistic son, her main concern was the human papilloma virus (HPV) vaccine Gardasil, “I have read about this Gardasil vaccine—I haven’t given him the third dose. I am afraid it will affect him. I left it at two doses because I have read that it does more harm than good” (Monica, interviewed May 13, 2017). While I did not ask Monica directly about why she feared the HPV vaccine specifically, it is possible that her fears arose from factors outside of the context of autism. Two studies conducted in Puerto Rico concerning uptake of the HPV vaccine Gardasil found that despite adequate knowledge regarding risks and prevalence of HPV on the island, uptake continued to be low (Roura-Monllor et al 2017, Fernandez et al 2014). In their study investigating HPV vaccine uptake in Puerto 107 Rico, the authors found significant shared concern over the safety of the vaccine and noted that mothers interviewed were concerned that the vaccine may leave their children sterile or cause illness, writing that these mothers did not want their children to be ‘guinea pigs’ (Fernandez et al 2014). Quinta, mother of a 10-year-old autistic daughter Carolyn and an infant son, described to me how she has decided to forgo all vaccinations for the time being: “I know that the vaccines were the trigger. I stopped vaccinating. My baby is not vaccinated. I stopped because with my daughter Carolyn, she had 4 days of fever after the vaccine [...] if the child is uniquely predisposed and that ingredient in the vaccine activates it, the change happens there. After seeing that…I stopped giving them to my children. The pediatricians told me to come back in one month, but I never did. I was too scared” (Quinta, interviewed May 29, 2017). When Quinta mentioned the importance of considering a child’s ‘unique predisposition’ to vaccinations, she spoke to what sociologist Jennifer Reich writes here regarding how mothers’ vaccination decision-making is based on their own child’s individual circumstances: “Mothers’ perceptions of vaccines as potentially harmful and their resulting strategies of refusal underscore larger systems of meaning, which include desires to optimize their children’s health and emphasize their children’s unique needs instead of generic public health policies. They do so in dialogue with cultural norms that hold them uniquely accountable for their children’s success, failures, health, and disability” (Reich 2014:699). When discussing concerns of vaccination ‘triggering’ autism with parents, the topic of mandatory vaccinations for school-age children came up often. Puerto Rico’s Law #25 was passed in 1983 and requires all students under the age of 21 attending any educational institution (public, private, day care centers, and social treatment centers) to comply with required immunizations; exceptions may be made on grounds religious and medical, the latter having to be certified by a licensed physician (Torres 2016, Vazquez-Otero 2019). Quinta, mother of a 10- year-old autistic daughter Carolyn, noted that she had been using this exemption to avoid having to immunize Carolyn, who has attended both public and private schools. However, she explained 108 how she was concerned this might change; “I’m holding off on the vaccines. I went to a lawyer and I had him make an affidavit for not vaccinating on religious grounds. Right now, I am afraid because they want to change that here in Puerto Rico” (Quinta, interviewed May 29, 2017). Dolores, mother of an 18-year-old autistic daughter, spoke animatedly about her objections to the mandatory vaccination laws on the island. In a phone conversation prior to our interview, she mentioned she was very busy with her public policy and advocacy work. When I asked her if she believed vaccines are dangerous, she responded “I think they have risks. But the way the Department of Health talks about it, they act like it is holy water!” (Dolores, phone conversation, March 8, 2018). When I asked her about this during our interview later that day, she told me: “The Department of Health wants to make vaccination mandatory, like you have no choice. You can come home with your child from school and find out that they vaccinated your child without your permission. Vaccinations have a risk like any other medication. If you read this bill, they make it seem like you are injecting holy water into these children… but all vaccines have risk. […] We can’t force vaccination when parents are aware that their child has some conditions or that in their family there are conditions. And so, we are fighting against that law. We have the right to choose” (Dolores, interviewed March 8, 2018). When Dolores explained why she is opposed to mandatory vaccination, she emphasized that vaccines are not ‘holy water’, that they have risks, and that Puerto Rican families have ‘the right to choose’ what risks they wish to take. This speaks to the larger conversation surrounding mandatory vaccinations. Proponents of mandatory vaccination characterize immunization as both a collective and individual moral obligation (Giubilini 2019); “The rationale for school vaccine mandates is that the interests of the group—members of a classroom, a school, a school system, and those who have contact with school children—take precedent over the rights of any one individual” (DeStefano and Shimabukuro 2019:595). However, parents like Dolores and Quinta shared perspectives that considered mandatory vaccination as infringing on their rights and an 109 overextension of state power—a sentiment captured by Biss (2014) “Vaccines are regulated, recommended, and distributed by the state—there is a very literal relationship between government and vaccinations. […] We resist vaccination in part because we want to rule ourselves” (Biss 2014:127). Though Dolores opposes mandatory vaccination and doubts vaccine safety, she also emphasized that it was not easy to make these decisions about her child’s health care. Before we moved on to our next interview topic, Dolores interrupted me to ask if she could say something. I of course agreed and she said: “The parents here are ones that study, that read, that notice what has happened to our children after we vaccinated them…We are not talking out of ignorance or laziness. On the contrary, we talk about it because we read and consider our children’s personal situations…that is our job as parents, isn’t it?” (Dolores, interviewed March 8, 2018). The theme of parental responsibility also came up in my interview with Diana, mother of twin autistic sons. She described how frustrated she was by the dismissal of parents who have doubts about the safety of vaccination: “If there are people who have raised the alarm around the topic of vaccines, they have done it after they have vaccinated their children…They are people who truly and responsibly vaccinated their children and are responsibly sharing their experiences about what happened after the vaccines…the same thing happened to us. I believe it can be many factors…the amount of vaccines they are receiving these days is more than what we received…I believe that my sons have a compromised immunological system and that can be a distinct situation from regular children” (Diana, interviewed May 30, 2017). Diana’s perspective prompts us to examine the concept of ‘vaccine refusal’ more closely. In her article ‘Theorizing (Vaccine) Refusal’, anthropologist Elisa Sobo writes “Vaccine refusal often serves as a declaration of identification…this kind of refusal is more about who one is and with whom one identifies than who one isn’t or whom one opposes” (2016:345). It is possible to interpret Dolores’ and Diana’s responses as indexing their identities as ‘responsible’ parents who 110 feel it is their duty to think carefully about vaccinations and, if necessary, question guidelines and laws surrounding immunizations. In the next section, I turn my attention to the perspectives of autism treatment/care providers whom I interviewed to examine their experiences, which sometimes is an experience of partnership and other times an experience of opposition, with parental vaccination decision- making in the autism community of Puerto Rico. Here, the identity of the interviewee shifts from parent to provider; and with that shift comes a very different interpretation of what it means to be ‘responsible’ where vaccinations are concerned. Provider Perspectives on Parental Vaccination Decision-Making In my interviews with autism treatment/care providers in Puerto Rico (n=32), several (n=10) described their experiences and responses to parental vaccination decisions that are not aligned with their professional beliefs concerning vaccination and vaccine safety. Raquel, a social worker who coordinates care between autism families and pediatricians, explained to me that she personally does not believe vaccinations cause or ‘trigger’ autism. However, when parents seeking her services describe their beliefs that vaccines ‘triggered’ their child’s autism, she avoids argumentative responses: “They say to me ‘I gave him the vaccine at a year and nine months…Then he stopped talking’. So right away they associate it with the vaccine…It was most likely not the vaccine, but I cannot argue with the parents’ experience. I can’t discredit them—that was their experience, but scientifically it is not proven” (Raquel, interviewed May 12, 2017). I also spoke with Octavio, a neuropsychologist, about his experiences working with parents to make their vaccination decisions: Interviewer: So, you found that parents sometimes arrive here and say it was the vaccines? 111 Octavio: Of course. Often. Interviewer: And what do you think about that? Octavio: The literature does not support that idea. And I advise them that there is no single simple investigation that supports that data. […] They have concerns about the use of multiple vaccines at a time, and I explain to them how the evidence says no. Interviewer: And what happens when parents come here, hear that, and they still do not accept that? Octavio: Well, my role is to guide them. Afterwards, they can speak with their pediatricians. They are the parents, and they make the final decision. They must be treated with respect (Octavio, interviewed May 26, 2017). Octavio’s response noted both the power of scientific data and the importance of respecting parental autonomy. Several providers, including two pediatricians, whom I interviewed also described how important it was to explain data to parents of their autistic patients. During my interview with Cristian, a geneticist, his response was not as neutral. He expressed frustration not with his autistic patients or families, but rather with prominent ‘anti-vax activists’ whom he refers to as ‘con artists’. When I asked him about his experience with parental doubt in vaccine safety in his practice, he told me: “I do not believe vaccines cause autism…it was Andrew Wakefield that brought about all of this…But as it turns out, he was a con artist…who has caused more impact on the population than the American Academy of Pediatrics! And right now, what the evidence says is that vaccines do not cause autism. […] We medical doctors must work with the data. Sometimes, I see that parents are very anxious and so I refer them to their pediatrician to talk about that” (Cristian, interviewed May 19, 2017). While most providers (n=27) with whom I spoke did not express a belief that vaccines ‘triggered’ or in any other way caused the onset of autism spectrum disorders, I did interview a minority of providers (n=5) who voiced concerns that vaccines may be contributing to the rise in autism cases in Puerto Rico. In my interview with Bianca, a clinical psychologist, she pointed to the perspectives of parents of her patients, “This is very controversial here in Puerto Rico…in my clinical experience, almost all of the mothers or fathers mention that after a specific vaccine at two years old, the child started to demonstrate delays in development…. I think the vaccines 112 have something to do with it” (Bianca, interviewed May 27, 2017). Victor, director of a private school for students with developmental disabilities, described his belief that it is not a single vaccination ‘triggering’ autism but rather the amount of vaccinations being given at a time: “It isn’t really the vaccine per say, but the timing of when they give the vaccine because their body is not prepared to receive so many…I continue to believe that vaccines have a lot to do with autism… they take very tiny kids and start to bombard them with so many vaccines at the same time…their defenses cannot manage with all of that virus entering their body” (Victor, interviewed May 24, 2017). I interviewed Laura, an occupational therapist, at her private office. When I asked about what may cause autism, she immediately pointed to vaccines. She described parents showing her videos of their children prior to receiving their autism diagnoses. As I described in the opening of this chapter, these videos are striking and often very emotional. She noted that she is convinced that this is evidence of the effect of vaccinations and mentioned that in her belief there is one vaccine in particular that may be the ‘culprit’ in the rise of autism cases on the island, the hepatitis B vaccine: “In Puerto Rico, they made it a law to give the hepatitis vaccine as soon as the child is born…I believe that might be the boom in autism diagnoses in Puerto Rico. […] What is the probability of a newborn baby acquiring hepatitis? …That has always been my question, is that vaccine affecting their brain?” (Laura, interviewed May 20, 2017). And so, most providers working in the autism community of Puerto Rico whom I interviewed did not hold the belief that vaccines may ‘trigger’ autism. These providers noted the importance of emphasizing scientific data and respecting parental autonomy when discussing parental vaccination decision-making. However, some did share with me in our interview that they believed vaccination—be that the amount of vaccines or one specific vaccine in particular— does ‘trigger’ the development of autism in children. 113 Future Directions The idea that vaccines ‘trigger’ autism, and the subsequent impact those ideas may have on parental vaccination decision-making in Puerto Rico have taken on newly renewed relevance to today’s autism families and wider community due to the COVID-19 global pandemic. Autism families have been shown to be disproportionately impacted by the global pandemic on several fronts including severely diminished access to health care and therapeutic services, lack of available support services, increased stress levels, and negative impact on mental health of autistic individuals and autism families (Cassidy et al 2020, Pellicano and Stears 2020, Manning et al 2020). Researchers have also hypothesized that individuals diagnosed with ASDs may be at a disproportionately higher risk of poor health outcomes following COVID-19 infection as compared to the neurotypical population (Lima et al 2020). Researchers have emphasized the importance of addressing questions of vaccine safety and engaging in active conversation with patients and communities, including the autism community, regarding the new COVID-19 vaccines (Boodoosingh et al 2020, Hotez 2020, Kasstan 2020). According to the COVID Tracking Project, over 90,000 Puerto Ricans have tested positive for COVID-19 infection and approximately 1,800 Puerto Ricans have died of the virus (COVID Tracking Project February 2021). To date, no research has been published regarding how the COVID-19 pandemic has impacted Puerto Rican autism families. My study’s findings, though small in sample size, raise concern that parental vaccination decision-making regarding the COVID-19 vaccine may be influenced by previously held vaccine safety doubts and beliefs that vaccines may ‘trigger’ autism. One potential approach to examining how parents make their vaccinations decisions is to collect what Bernice Hausman terms the ‘vaccination stories’ from the autism community of Puerto Rico. Vaccination stories may be defined as “stories of our 114 relationships to both our health care providers and the state, our compliance or noncompliance with the law, and our experience and understanding of health and illness” (Hausman 2019:3) and may provide a valuable perspective on the complicated process of parental vaccination decision- making in this community. Therefore, future research exploring the personal experiences and perspectives of Puerto Rican autism families regarding these complex belief networks surrounding vaccinations may prove useful in understanding what specific structural, historical, political, and/or cultural factors both local and global may inform the parental vaccination decision-making of Puerto Rican autism families. Conclusion In conclusion, this chapter has explored parental and provider responses to the question, ‘In your opinion, what causes autism?’. I began this chapter with a discussion of how autism was broadly considered by parents and providers alike to be caused by a complex, multifactorial combination of genetic and environmental factors. A common theme that emerged from these interviews was the belief that certain ‘triggers’ for autism exist and that vaccines were one of these ‘triggers’. Approximately half of parents interviewed (n=17) believed vaccines were at least a contributing factor to their child’s development of autism. I described how some parents were adamant in their beliefs that vaccines ‘triggered’ their child’s autism while other parents were equally adamant that vaccines ‘had nothing to do’ with autism. I also noted how many parents were uncertain either way, with their uncertainty frequently fueled by a lack of trust in the transparency and intentions of the pharmaceutical companies who manufacture vaccines. I then discussed how the belief that vaccines may ‘trigger’ autism may affect parental vaccination decision-making. I discussed how parents weighed the benefits of vaccinating their children against their child’s individualized health needs and risks, noting how parents 115 emphasized this concern was part of their responsibility as a good parent. I also discussed how some parents in Puerto Rico advocated against mandatory vaccination because they view it as an infringement on their ‘right to choose’. Next, I explored provider perspectives on and responses to parental expressions of doubt in vaccine safety. Most autism treatment/care providers (n=27) whom I interviewed did not believe vaccines were a contributing factor in the development of autism. I noted how providers emphasized the importance of scientific data and respect for parental autonomy when working with autism families. Additionally, I noted that some providers themselves expressed vaccine safety doubts. Lastly, I discussed future directions for research examining parental vaccination decision-making and how this has taken on renewed relevance in light of the global COVID-19 pandemic. Discussions regarding the autism-vaccine controversy and the effect it has had on parental vaccination decision-making in autism communities around the world are essential, yet these discussions can be difficult as tensions remain high. Therefore, a new approach may be required to facilitate a thoughtful and fruitful conversation: “Vaccine hesitancy and acceptance are complex, multifaceted issues. Our understanding of them must be complex and multifaceted as well. While some in public health and medicine may be uncomfortable with the messiness inherent to such an understanding…it is only by appreciating the totality of the mess that the paths out of it can be both seen and taken” (Poland and Brunson 2015:279). Within this chapter, I have demonstrated that a crucial step towards developing a multifaceted, nuanced understanding of these controversial topics is to consider the local context where these beliefs thrive. I use the example of the Puerto Rican autism community to show how local history such as a legacy of environmental pollution at the hands of the federal government, politico-economic factors like a distrust in pharmaceutical companies when considering the industry’s economic incentives, and sociocultural influences such as cultural emphasis on a 116 mother’s instinct and responsibility to protect her child, uniquely shape Puerto Rican parents’ and providers’ beliefs regarding autism causation and vaccination decision-making. In the next chapter, I examine how this local context has influenced another aspect of the Puerto Rican autism family experience: their language practices and the local language ideologies that shape them. 117 CHAPTER 7: The ‘Little American’ Phenomenon: Dynamics of English Language Preference and English-Spanish Language Ideologies 118 Field Note Entry, May 25, 2017: When I first met Gabriela, we were both running across the beach trying to catch her large, hot-pink sunhat that had blown away in the wind. I was at the beach to observe a surf therapy session and her 12- year-old autistic son Roberto was participating. Covered in sand and out of breath, we walked back to her beach chair and got to talking. The session was over before we knew it and Gabriela was kind enough to invite me to have dinner at her home later in the week. I happily accepted the invitation and 5 days later found myself sitting at her dinner table surrounded by her family—Gabriela, her husband, her mother, and her three children. In addition to her eldest son Roberto, Gabriela has a 10-year-old neurotypical son Xavier and an 8-year-old neurotypical daughter Mari. Figure 11: Parents Watching Surf Therapy Session Jobos Beach, Isabela, PR (Photo by Author) Half-way through my plate of arroz con pollo [rice with chicken], I noticed something a bit odd. I had only ever spoken to Gabriela in Spanish as she had mentioned on the beach that she is embarrassed of her strong accent when speaking English. While she spoke Spanish with me and everyone else around the table, she only spoke to Roberto in English. I then noticed that it wasn’t just Gabriela; everyone at the table spoke Spanish with each other except when speaking to Roberto. It struck me then that I too had fallen into that pattern and spoke to Roberto in English. Roberto, who identifies as high-functioning autistic and is completely verbal, responded to everyone using English only. At one point, Gabriela was telling a story about driving to Roberto’s science fair (he won first place) and a volley of Spanish, English, and Spanglish began: 119 Gabriela: “Right, Roberto? We drived to la feria [the fair] and we got stuck at the…mira Mari ¿cómo se dice semáforo? [hey Mari, how do you say traffic light?] Xavier: Stop light. Gabriela: Si, el stop light. [Yes, the stop light] We were going to be late— Mari: --Mami, ¡no! Dilo así ‘traffic light’ [Mommy no! Say it like this ‘traffic light’] Gabriela: Ok. Traffic light. Roberto, we got stuck at the traffic light and after what happens? Roberto: You drove fast. We arrived at 10:52, 8 minutes before schedule. I did my presentation at 11:35 and was announced the winner at 1:42. Gabriela: ¡Si! ¡Mi campeón! [Yes! My champion!] Roberto’s Grandmother: ¿Que dijo él? [What did he say?] Xavier: Dijo que presentó a no sé que hora y el ganó. [He said that he presented at I don’t know what time and he won] Gabriela ((to interviewer)): Mi mama no habla inglés, pero yo más o menos puedo como translate para ella. Y los nenes también. Me da pena porque ella quiere hablar con Roberto pero ¿qué podemos hacer? ¡El es un americanito total! [My mom doesn’t speak English, but I can more or less like ‘translate’ for her. And the kids too. I feel bad because she wants to speak with Roberto but what can we do? He’s totally a little American!] Everyone laughs at this around the table except for Roberto, who is carefully lining up his rice grains with his fork. After showing me Roberto’s art portfolio, I finished my coffee and thanked everyone as I kissed them goodbye. I drove the hour back home and stayed up late typing up my observations of the evening. I kept thinking of Roberto, the ‘little American’, sitting surrounded by his Puerto Rican family, whose Spanish flies quick and light but transitions into staccato English when speaking with the lone autistic person at the table. What does it mean for the Puerto Rican autistic child to be both a neurological and linguistic outsider in their own home? Throughout this dissertation, I argue that our understandings of autism spectrum disorders and the reality of the autism family experience cannot be constructed within a cultural vacuum, but instead must be informed by the local politico-economic and sociocultural context in which this neurodevelopmental disorder is lived. And as is true for all humans since the time of early hominids, a core feature of that human sociocultural experience is language. As I have intimated with the field notes excerpt that began this chapter, language practices within Puerto 120 Rican autism families often differ from their neurotypical counterparts. Throughout my many field experiences and encounters within the Puerto Rican autism community, I noticed that the use of English, as opposed to Spanish, was much more frequent as compared to my experiences within the general population on the island. How many autistic children like Roberto were sitting surrounded by loving family at the dinner table, yet left linguistically marooned on an island of English in a sea of Spanish? An ethnographic methodology has been shown to be very useful in examining questions surrounding linguistic experiences within the context of autism, as Olga Solomon writes "The ethnographic perspective makes visible aspects of language use and everyday experiences of children with autism spectrum disorders and their families that are usually obscured in other theoretical approaches to autism" (Solomon 2008:151). After incorporating explicit questions about bilingualism and language preference into my interviews with parents and treatment/care providers, a complex story featuring the two official languages of Puerto Rico, and the politics of class, culture, and identity that surround them, began to unfold. This chapter will explore language use and bilingualism within the Puerto Rican autism community through the perspectives of parents of autistic children and autism treatment/care providers. I focus on the surprising finding that Roberto is by no means an outlier, but he is in fact an example of a trend within my observations and interviews; a trend of autistic children on the island being perceived by their parents and providers alike to prefer English despite living in a Spanish-dominant society. I term this finding the ‘Little American’ phenomenon and contextualize this within a framework of language ideology by exploring how cultural beliefs and societal constructions regarding English and Spanish use on the island may influence linguistic preference within the Puerto Rican autism community. I conclude with a discussion of 121 the potential implications that this perceived English language preference may have in terms of autism family dynamics, socialization and cultural inclusion of autistic individuals, and access to appropriate autism-related treatment and interventions. ‘They Don’t Sound Puerto Rican’: Perceptions of autistic language in Puerto Rico A core component of autism is its impact on a child’s language development. According to the CDC, language developmental delay is a ‘red flag’ for an autism diagnosis and some examples of how language may be impacted include delayed speech and language skills, echolalia, reversal/confusion of pronouns, difficulty understanding abstract language like sarcasm, or speaking in a ‘flat, robotic, or sing-song’ voice (CDC 2020c). Like everything with autism, impact on language is highly variable. While many autistic individuals are completely verbal, there remains approximately 40% of autistic individuals that are completely non-verbal and approximately 25-30% of autistic children have some words by 12-18 months, but then lose them (CDC 2020c, National Center for Birth Defects and Developmental Disabilities 2019). Autism impacts the development of language skills from many angles. For example, many autistic individuals also have co-morbid speech apraxia, a diagnosis where the brain has a hard time coordinating the signals needed to execute plans for speech motor movements. One study found that approximately 63% of children with an autism diagnosis also had apraxia (Tierney et al 2015). Language development in autistic individuals may also be impacted by deficits in attention to voices and decreased joint attention (being able to focus on two things at once), both of which are core skills that are critical to language learning (Hambly and Fombonne 2012). Phonetic and social speech processing abilities are often decreased in autistic children, which may result in diminished skills that are crucial to successful social communication (Kuhl et al 2005). 122 Speech and language developmental delay was the most common first symptom of autism noticed by parents of autistic children with whom I spoke for this study, with 34% of parents reporting language delay as the main reason they sought an autism evaluation. In an interview with Rita, a speech pathologist practicing in the southern municipality of Ponce, she noted: “In most of the initial interviews when I ask them what were the parents’ biggest concerns, it is the communication. They don’t talk about how the child has tantrums, they don’t talk about how he does not have eye contact, that he doesn’t pay attention to them, that he doesn’t respond when they call his name. Those are not their worries. Their concerns are simply that the child does not talk” (Rita, interviewed May 18, 2017). For some parents, autism itself is conceptualized as a communication barrier. When I spoke with Lola, mother of two autistic sons ages 3 and 7, she told me that for her “…autism is like a barrier between him and I. It’s like when you go to another country and don’t speak the language. And you try to communicate with that person, and that person tries to communicate with you, but you just can’t” (Lola, interviewed August 27, 2019). While verbal language is often absent or significantly limited in autistic individuals, that does not mean language and communication are totally absent. Many autistic individuals utilize augmentative and alternative communication (AAC) systems and devices like Picture-Exchange Communication Systems (PECS). 123 Figure 12: Example of Picture-Exchange Communication Systems (Retrieved from Lucas 2013) These methods of communication are critical for autism families, as they enable what anthropologist Joshua Reno calls ‘semiotic agency’ for non-verbal autistic individuals, writing that we must embrace AAC systems because “…to do otherwise is to potentially misrecognize the creative ways in which ‘unnatural’ language learners incorporate external linguistic equipment, including those around them, into effective home signing systems” (Reno 2012:416). In an interview with Mariela, mother of a 16-year-old autistic son, she spoke about how she was disheartened by society’s frequent assumption that her son was oblivious to the world around him because he is non-verbal and utilizes an AAC device: “He communicates using his book of pictures, called PECS. He also has his assisted technology device to help him express himself. We are still starting out with the device…but he understands everything. You can’t talk bad about him in his presence, he understands everything and he gets mad! In some places, people talk about him like he is invisible…They think because he doesn’t talk, he doesn’t understand…there you might have a situation where he gets a little aggressive to express himself. To express his anger. He doesn’t like people talking about him like he is not there. No one likes that” (Mariela, interviewed May 30, 2017). For verbal autistic individuals, not all areas of language and communication are impacted equally. Studies have shown that in a high-functioning autism setting, the components of 124 language that are most impacted are gestural communication, speech prosody, and pragmatics (Baker 2013, Colle et al 2008). Pragmatics in language may be best understood as the ability to use language according to social and situational context—perhaps best summarized in the popular refrain ‘It’s not what you say, it’s how and when you say it’. Good examples of pragmatic language are sarcasm and the socially appropriate use of slang. When interviewing Janet, mother of a 14-year-old autistic daughter, she spoke about the difficulty her high- functioning autistic daughter has with pragmatic language: Janet: She does not know how to identify many things in conversations. She asks me many times, ‘Mom, is that good? Are they saying a bad word?’ For example, ¡Acho Boricua! [What’s up, Boricua!] That is popular around here. She says ‘Mom, is that ok to say?’ And I’m like yes, that’s ok. Interviewer: Popular phrases. Janet: Yes, she doesn’t know them. So, I tell her yes you can say that when you are with me. For example, when someone says ‘Shut up’, she asks me ‘Mom, is that okay to say?’ And I say no, you can’t just tell people to shut up […] She doesn’t know how to identify that abstract language. And so, it’s difficult for her because she isn’t going to be able to identify when they are joking with her and when they are insulting her or telling her something bad (Janet, interviewed August 29, 2019). It was common in my interviews with parents and providers for autistic Puerto Rican children, even those who are completely verbal and fluent in Spanish, to be recognized as having language this is linguistically distinct from the norm. Dolores, mother of an 18-year-old autistic daughter, captured this succinctly while packing up boxes of supplies after Hurricane Maria to send to another autism non-profit organization across the island; she said “It’s simple. They just sound different. They don’t sound Puerto Rican!” When I asked her to elaborate on that statement, she responded: “You’ll notice that they have an American accent in Spanish…or we have young autistic people speaking like Mexicans do…A little like how you speak to us now, the language you speak with us is not Puerto Rican…you speak Spanish for sure, but it isn’t a Puerto Rican accent. You have a general accent. That’s what they sound like, they don’t sound like Puerto Ricans” (Dolores, interviewed March 8, 2018). 125 Dolores was not alone in her views. Gladys, mother of a 22-year-old autistic son, described her son’s speech this way: “In my house, it is Spanish only. I speak English out of necessity. […] When my son speaks, he has like a Mexican tone…he does not say guineo [banana]. He says banana. He doesn’t say bola [ball], he says pelota. He doesn’t say chorrera [slide], he says tobogán. Basically, he likes Mexican Spanish more. He doesn’t use the words we Puerto Ricans use; you get what I’m saying?” (Gladys, interviewed August 29, 2019). Through several observation sessions, I was able to listen to Dolores’ and Gladys’ children in conversation with their parents. This ‘autistic accent’ that parents characterized as ‘American’ or ‘Mexican’ sounded to me like speech patterns I have heard frequently when working with autistic individuals both in Puerto Rico and the United States. This ‘autistic accent’ has been termed ‘atypical speech prosody’ and is hallmark of autism spectrum disorders. Prosody is the term for the stress and intonation of our speech and the atypical prosody associated with autism is identifiable by decreased expressivity (monotone sounding) and an atypical rate and rhythm to speech that is often perceived in neurotypical society as ‘awkward’ (Bone et al 2015, Diehl and Paul 2012). Beatriz, mother of a 21-year-old autistic son, noted this ‘mechanical’ sounding speech and associated it with an American accent: “He speaks mechanically. Look, he speaks Spanish with an accent, as if he were raised in the United States. And usually, they all tend to do that. They are more fluent in another language that is more mechanic, like English” (Beatriz, interviewed May 19, 2017). ‘He’s a Complete American!’: The reported English language preference of Puerto Rican autistic children I was not surprised to hear concerns of language delay and language differences from the Puerto Rican autism community. However, I was surprised by a persistent, widespread theme that emerged during my observations and interviews regarding language preference. I commonly 126 heard in my conversations with autism community members that Puerto Rican autistic children, despite living in a Spanish-dominant society, prefer to use English rather than Spanish as their primary language. This is striking because Spanish is the overwhelming dominant language on the island and is the primary language used in public education, community, and family settings (Barreto 2020, Pousada 2017). For example, when given a choice to conduct our interview in English or Spanish, only 6 of the 67 community members whom I interviewed elected the English option. According to both the literature (Torres Gonzalez 2002, Hermina 2014, Carroll 2016a) and from my experience of living and working for many years in Puerto Rico, it is quite common for Puerto Rican children to be bilingual English-Spanish speakers, especially those attending private bilingual schools. However, it is rare for a child born and raised on the island to exhibit a strong preference for English rather than Spanish. Furthermore, it is extremely rare for a child born and raised on the island to be a monolingual English speaker; perhaps the few exceptions being children of American ex-pats who attend one of the few private, English-only schools and whose social circles/peer groups consist of primarily other American ex-pats. Therefore, this perceived English language preference within the autism community has come to be recognized by many as not a simple question of language preference, but rather as a ‘symptom’ or ‘warning sign’ for a potential autism diagnosis. This was the case with Raquel, a social worker with the Department of Health’s Autism Center. One of Raquel’s primary responsibilities at the Autism Center was to provide a general overview of the autism services and support available on the island. She was often the first person an autism family met within the autism community, as families were frequently referred to the Autism Center by a pediatrician who suspected a child 127 may require an autism evaluation. During her interview, she characterized a strong English- language preference as a ‘red flag’ for autism: “A curious thing about language is that a child with autism, some of them, not all, even though the language of the home is Spanish…the child prefers English. And suddenly, the first words that they start to have are in English […] Even the babbling of these children seems more like English than Spanish…I can say that it is one of the red flags, one of those check marks that one has for an autism diagnosis […] If there is a preference for English, that is a red flag for us here” (Raquel, interviewed August 22, 2019). For several Puerto Rican autism families interviewed, English language preference itself was perceived as one of the many surprises that are part of the ‘autism package’. Bernardo, a main caregiver for his 10-year-old autistic grandson, mentioned to me how surprised he was by his grandson’s English preference: “I was shocked. My grandson was born and raised here in Puerto Rico and he picked up English like that! ((Bernardo snaps his fingers)) He has even had to correct his English teacher when she pronounces words wrong […] We had to put him in a private school, because Spanish for him is ((Bernardo grimaces and waves his hand as if to say ‘not so good’)). I am telling you; he is a complete American! He doesn’t speak any Spanish and he was raised here!” (Bernardo, interviewed May 13, 2017). After the first mention of a potential trend of a perceived English preference among autistic Puerto Rican children, I incorporated two additional questions into my background information gathering that ended each interview within the parent cohort (n=35). I first asked the open-ended question ‘What language(s) are used your household?’ I elected to leave the question open-ended rather than multiple-choice because I wanted to elicit a personalized response given language use within the bilingual environment of Puerto Rico may differ significantly from household to household. I assessed each of the 35 responses and separated them into three distinct categories derived from a popular schema within the bilingualism literature (Kay- Raining Bird et al 2016): 1) Monolingual Spanish/Spanish-dominant bilingual, 2) Balanced bilingual, a term for when proficiency in both English and Spanish is about equal, and 3) Monolingual English/English-dominant bilingual. The results are depicted below in Table 5. 128 Table 5: Language(s) Used in the Home as Reported by 35 Parents Interviewed Participants Language(s) used in the home Monolingual Spanish/Spanish-dominant bilingual Balanced bilingual Monolingual English/English-dominant bilingual Number Percentage - 35 32 3 0 91% 9% 0% Over 90% of the households were reported to be Spanish-dominant and none were reported to be English-dominant. Next, I asked the open-ended question ‘What language(s) does your autistic son/daughter use?’ These responses were also assessed and separated into the same categories as above. However, this time there were a significant number of interviewed parents who reported that their autistic children demonstrated a monolingual-English or English- dominant bilingual language preference. The results are depicted below in Table 6. Table 6: Reported Language(s) Use of 39 Autistic Children by Parents Interviewed* Participants Child’s Language(s) use Monolingual Spanish/Spanish-dominant bilingual Balanced bilingual Monolingual English/English-dominant bilingual Number Percentage - 39 14 13 12 36% 33% 31% *No children were interviewed for this study. Child’s language use was reported by their parent(s). While 91% of interviewed parents reported their households as monolingual Spanish/Spanish-dominant households, only 36% of the autistic children were reported by their parents to be monolingual Spanish/Spanish-dominant language users. What is most striking of these results is that 10 of the 12 children reported by their parents to be monolingual English/English-dominant language users lived in monolingual Spanish/Spanish-dominant households. Roberto, the child featured at the beginning of this chapter, was one of those 10 children—the lone English language user at the dinner table. 129 In addition to inquiring about household language use and the language preference of Puerto Rican autistic children, I also asked both parent and provider cohorts about what they believed might be the reason behind this phenomenon of ‘Little Americans’. When asked why they thought autistic children on the island seem to prefer to use English, the same two prominent rationales emerged from both interview cohorts. The first rationale was as follows: Since autistic children often experience language developmental delay or language difficulties, it makes sense that they would prefer to use English because English is an ‘easier’ language than Spanish. The second rationale stemmed from the belief that autistic children are ‘technologically gifted or inclined’. Therefore, the autistic population of Puerto Rico will prefer to use English as it is the ‘language of technology’. English is ‘easier’ than Spanish It is outside the scope of this dissertation to support or refute the argument that any one language can be ‘easier’ to learn than another. What matters here is that this is what many parents and treatment/care providers in the Puerto Rican autism community with whom I spoke perceived to be one of the main reasons for the phenomenon of English language preference in autistic children on the island. 24 of the 67 parents and treatment/care providers whom I interviewed considered English to be an ‘easier’ language than Spanish and described the ‘easiness’ of English in many ways. Several characterized English to be a ‘simpler’ language when compared to Spanish. Janet, mother of a 14-year-old autistic daughter, explained: Janet: It is easier for them. The language is much simpler, English much more so than Spanish. Spanish has more conjugations, the verbs are a bit more complicated. In English there is just ‘I love you’, but for us ‘I love you’ is ‘te quiero’ or it could be ‘te amo’. Spanish has a lot of language, but for them ‘I love you’ is just ‘I love you’. Interviewer: Ah okay. So, you think English was easier for your daughter? 130 Janet: Yes. But you know, I’ve never asked her what is easier for her, English or Spanish. I have never asked her that (Janet, interviewed August 29, 2019). Beatriz described a similar view during our interview and noted that “English is easier to learn than Spanish because we have a lot of color in our language. And so, it is more difficult for them. That’s why these children here have a disposition towards English” (Beatriz, interviewed May 19, 2017). Others believed English to be an ‘easier’ language because they believed it to be a more ‘direct’ language. Rosalia, a caregiver to her 16-year-old autistic brother, characterized English this way: “The English language is a lot easier. Because we here in Puerto Rico…the vocabulary is much more extensive in what we speak and write in comparison to English. When we see the translations written, it is much shorter, much more brief. And I would say it is even more direct, like we use a lot of words to describe something” (Rosalia, interviewed May 24, 2017). In addition to associating the English language with simplicity, lack of color, and directness, English language was also associated with another quality: assertiveness. Salma, mother of 16-year-old autistic son, was raised in Puerto Rico but attended graduate school in the United States. She characterized her household as a Spanish-dominant bilingual household and her son as a balanced bilingual language user. She described how she uses English with her son when she needs to be sure he has understood her: “English is a more practical language, more agile […] When I am angry, and I want to know if he has understood me, I always speak English. Because its ((Salma snaps fingers)). You know he is understanding you. Sometimes in Spanish, I don’t know if he knows. It takes him more time to process. English is assertive. It is quick. It works” (Salma, interviewed August 29, 2019). The Role of Technology and Media The other prevalent rationale suggested by autism community members with whom I spoke regarding why Puerto Rican autistic children may prefer to use English rather than Spanish was the influence of technology and media in the lives of these children. Throughout data 131 collection, a narrative theme emerged indicating that autistic children in Puerto Rico were perceived by their parents and providers alike to be ‘inclined towards technology’ or ‘technologically gifted’. While the nature of what constituted this characterization ranged in examples from an 18-year-old autistic computer whiz who knew four programming languages by age 12 to a 6-year-old’s ‘obsession’ with watching cartoons on their iPad, technology and media were perceived to play a major role in the English language preference of these children. For Salma, mother of a 16-year-old autistic son, the English language itself is linked to technology: “Of course, there is the component that English is the language of technology. So, these children are very technological. Since they are born, they are gifted in that area” (Salma, interviewed August 29, 2019). 20 of the 67 individuals I interviewed identified the amount of television and internet media consumed by Puerto Rican autistic children as part of the reason behind this English language preference. Dolores, mother of an 18-year-old autistic daughter, described it this way: “Many children with autism in Puerto Rico prefer English. It is easier for them in Puerto Rico. The number one theory is cable TV. Remember that young people are going to entertain themselves with television and cartoons that are in English, for the most part” (Dolores, interviewed March 8, 2018). Pilar, a developmental pediatrician practicing on the island, expressed her belief that exposure to technology and media plays a significant role in English language preference. When I asked her about what languages her autistic patients seemed to prefer, she responded: “I have many patients here that have an autism diagnosis and yes, they do have a preference for the English language. It is possible that it is because the children have much exposure through television. They are kids, in general, that are very pervasive and restricted in their tastes. They tend towards technology, they are immersed in English, they watch videos in English. Sometimes, the parents do not restrict television use and so, they acquire the English language. Apart from the fact that the Spanish language is a very 132 rich language, it has many rules and more variability. So, they perhaps tend towards English because it is more direct” (Pilar, interviewed August 30, 2019). While the belief that English language preference can be attributed to media exposure was certainly widespread in this study, it was not, however, universal. While interviewing Michelle, a mother of a 21-year-old autistic son and a school administrator at a private school for children with developmental disabilities, she bristled at the idea that media exposure prompted her son’s preference for English. She considered this rationale to be an extension of a long history of parental blaming in the world of autism (Bettelheim 1967, Silverman 2012). When asked what she thought might be the reason behind her son’s English-dominant bilingual language use, she responded: “I think that the articulation in English is much simpler. Spanish is much more complicated, right? The lawyers, including the judges, say it is the parents’ fault, for a change! because they believe that we give them too much cable. But I literally removed the TV from my home to follow the recommendations for the program that says the most interesting thing for the child needs to be you, because it doesn’t interest them to interact…that factor they talk about that says it was from exposure to TV, I discard that completely” (Michelle, interviewed May 30, 2017). Provider Recommendations Regarding Language Use It is important to contextualize this phenomenon of ‘Little Americans’ within the broader autism studies literature, where the effects of bilingualism and multilingualism on language development within the autism and developmental disabilities communities have been studied at length. It has been common practice across the health professional community to advise autism families against bilingualism (Yu 2016, Kremer-Sadlik 2005, Yu 2013, Harlin and Paneque 2006). These concerns have roots in a subtractive view of bilingualism, which proposes that exposing a child to two or more languages will detract from their primary language development (Kay Raining-Bird et al 2016, Stritikus and Garcia 2005). This subtractive bilingualism perspective is heightened in the context of a child with language delay or difficulty, such as in 133 the case with the great majority of the autistic population, where there is a fear of ‘confusing’ or ‘overwhelming’ the child with too many languages at once and thus negatively impact their language development (Kay Raining-Bird et al 2016, Kremer-Sadlik 2005). The subtractive bilingualism hypothesis has been debunked within the literature in both typically developing (Harlin and Paneque 2006, Bialystok 2005, Paradis, Genesee, and Crago 2011) and autistic populations (Kay Raining-Bird et al 2016, Valicenti-McDermott et al 2013, Lim et al 2018, Bodea and Dorina 2014, Uljarević et al 2016, Beauchamp and MacLeod 2017, and Beauchamp et al 2020). As Lim et al write “Recommendations that bilingual (autism) families speak in a single language appear to be based more on logical arguments than empirical evidence" (Lim et al. 2018:2890). Instead, the literature supports an additive bilingualism hypothesis, in which learning multiple languages comes at no cost to learning the first language, or even a synergistic bilingualism approach where learning more than one language increases a child’s general development (Kay Raining-Bird et al 2016 and Valicenti-McDermott et al 2012). Furthermore, some have argued that the separation of language use that is required in recommending monolingual language use in bilingual households is not realistically possible when considering bilingualism as a lived phenomenon: “The idea that one language can be isolated from another in a speaker’s repertoire is a formalistic view of language that only partially corresponds with how speakers experience bilingualism as a lived phenomenon… the conceptualization of bilingualism as two-languages-in-one-head is inconsistent with speakers’ everyday experiences of bilingualism …beyond being unnecessary or unhelpful, advising parents to reduce or separate their languages when speaking with their children can set families on a path to pursue a goal that is fundamentally untenable and at odds with their ways of life” (Yu 2016:425). Considering the literature and evidence-based recommendations, I was interested in exploring what Puerto Rican autism treatment/care providers were recommending to their autistic patients and their families regarding monolingual or bilingual language use. Were Puerto 134 Rican autism families part of this trend of professional recommendations supporting a debunked theory of subtractive bilingualism? What kind of language recommendations were being made by Puerto Rican autism treatment/care providers and what did Puerto Rican autism families think of these recommendations? When interviewing autism treatment/care providers about their English-Spanish language recommendations to their patients, most of their responses advocated for using whichever language the child seemed to display a preference for. I interviewed Renee, a bilingual behavioral therapist, about what languages she recommended using in therapy and at home. She stated that she utilizes whichever language seems to be the child’s preference, but noted that eventually they would need to “make a decision” about which language will be utilized in therapy: “We use Spanish here in the office. But yes, the majority of my therapists with the exception of one are completely bilingual. So, it depends on the case. For example, if a child arrives, barely has language, and the few words they use are in English, well I am going to reinforce whatever method of communication they have. When they start acquiring more vocabulary, we have to make a decision obviously. Maybe we want them to choose Spanish because this is Puerto Rico, but if he already getting used to English, we accept that. Because what we want is for him to communicate, right? That is the goal” (Renee, interviewed August 26, 2019). During my second interview with Carla, a bilingual school administrator who was also in the process of completing her last year of training to become a speech pathologist, we spoke at length about English-Spanish language preference within the autism community. Our conversation highlighted her staunch advocacy for a child’s language choices to be respected, and for their language preference to “be viewed as a strength, not as a weakness”. Here is part of our interview: Interviewer: In your opinion, what are some consequences for a child who speaks only English in a country where, as you told me, everyone speaks Spanish? Carla: … For me, if the child has chosen English as his primary language, that should be respected… English should be seen as a strength, not as a weakness. […] For me, it is a punishment if you start to speak to him in Spanish. […] 135 Interviewer: […] So, we are left with the problem that these children choose English as their main language, but all of the therapists speak Spanish because this is Puerto Rico and here the primary language is Spanish. Carla: I’m going to solve that problem for you. In the code of ethics for professionals of speech and language pathology, it says you must attend to the child within their competencies. If a child comes to me and his primary language is English, and I do not know how to speak English, I should, as a specialist, refer that child to another specialist that can attend to them. It’s not just giving therapy in Spanish. Best case scenario you divide the therapies half in English and half in Spanish (Carla, interviewed March 7, 2018). Renee and Carla shared the perspective that bilingualism should be embraced in the therapeutic setting by allowing an autistic child to elect their preferred language. Both of these autism treatment/care providers valued their patients’ language preferences and sought to capitalize on it to reach their main therapeutic goal: having the autistic child communicate, no matter what language that communication is in. I spoke with some providers who supported bilingual language use not from a perspective of advocating for an autistic child’s right to choose their language of preference, but rather from a viewpoint that bilingualism is an invaluable asset in Puerto Rico. Pilar, a developmental pediatrician, recommended bilingualism to her autistic patients and their families: “I always tell parents that they have to work in both languages. I have had patients that I have sent to take speech therapy in English because the child communicated better in English than in Spanish. But if they are in Puerto Rico, they need Spanish. If the parents only speak Spanish, or even in cases where parents have some limitation in their English language, we must try for the child to be bilingual in a way that obviously suits their level of language development” (Pilar, interviewed August 30, 2019). In my interview with Victor, a clinical psychologist and school administrator, he described how English has become a near requirement on the island: “With many of these atypical students… they require more English, and we know that in Puerto Rico Spanish comes first, our second is English. But now, things have changed. We have seen many of these young people today finishing school here and afterwards immigrated to the United States…Parents want their children to succeed, and for that they need to go to a bilingual school” (Victor, interviewed May 24, 2017). 136 The most common recommendations from providers whom I interviewed and observed for this study regarding language use in the autism community supported bilingual language learning and advocated for the autistic child’s demonstrated language preference to be respected and ‘viewed as a strength’. However, in my interviews with Puerto Rican parents of autistic children, they shared a very different experience. In my 35 interviews with parents, over half mentioned being explicitly told to ‘pick a language’ by a treatment/care provider on the island. That is, they reported receiving health professional recommendations to use either English or Spanish but not both languages at the same time. Mona, mother of a 10-year-old autistic son, received such a recommendation when her son was a toddler. She was instructed to discourage her son, who is English-dominant bilingual, from using English: “When my son started his speech therapy… one of the recommendations from the speech pathologist was to not speak to him in English…We had to start with his mother tongue, which was Spanish. That was her recommendation…At some point, she said to me ‘Mom, we spoke about how you cannot teach him English’. And I told her, ‘I am not teaching him. He learned it by himself and I don’t have control over that!’ And so, yes. He speaks English very well and I don’t see anything wrong with that (Mona, interviewed August 30, 2019). Quinta, mother of a 10-year-old autistic daughter, expressed frustration when describing how she received similar recommendations from her child’s medical team. She was instructed to only speak Spanish with her daughter, who is English-dominant bilingual: “The doctors told me to take away the English, leave it with Spanish. And I said to them, how am I going to take away English if she is talking? She didn’t speak! And she began speaking English and I understand her. Her sister understands her. Her father sometimes understands. We are doing fine. […] And Spanish was difficult for her” (Quinta, interviewed May 29, 2017). As was the case with Mona and Quinta, interviewed parents who received language recommendations from treatment/care providers to ‘pick a language’ to use with their autistic child were most often instructed to select Spanish as that language. However, Magdalena, mother of a 3-year-old son who was recently diagnosed with autism, reported differently. She shared 137 with me that even though she is Spanish-dominant bilingual and her husband is a monolingual Spanish user, she was advised to speak English with her son and to try to find speech therapy services in English: The speech pathologist told us that we would need to reevaluate my son in a year to see if there is perhaps a diagnosis of verbal apraxia. She did give us a recommendation to look for a pathologist or therapist that can give services in English, because she saw that he was a little more receptive to English. I have tried to speak to him in English, but I really don’t speak it and my husband is no help! He speaks even less than me” (Magdalena, interviewed August 27, 2019). While mothers like Magdalena shared that they made significant efforts to try to follow the provider’s recommendations to ‘pick a language’, other mothers had a different response. Michelle, mother of a 21-year-old autistic son, said this of the language recommendations made to her by her son’s speech pathologist: “Now, therapists do not necessarily have the tools to work with autism…For example, we had a speech pathologist who the first thing she says to all of the parents…if we are in Puerto Rico, they have to speak Spanish. My son speaks more English. So, I didn’t care, I ignored her completely. I just wanted him to talk to me! I said to her that I’m sorry, I know this is your specialty, but I’m going to talk to him in English. Because he answers me in English. And that’s that” (Michelle, interviewed May 30, 2017). Michelle’s and Magdalena’s stories were just two of many such stories I was told during my fieldwork, parents of autistic children instructed by providers to ‘pick a language’. I ask, what are the potential implications for the Puerto Rican autistic population to be perceived as preferring English in a Spanish-dominant culture, to be seen as ‘Little Americans’ in their own home country of Puerto Rico? English-Spanish Language Ideologies in Puerto Rico To begin to answer this question of language preference and language ideology, we need to first consider all that is entailed when we say ‘language’. At first glance, the purpose and goal of human language seems one-dimensional: language is a system of signs used to convey information; and so, the language a person elects to use (if more than one option is available in 138 their linguistic repertoire) is the one that will get them closest to that goal. However, when viewed through a linguistic anthropological lens, languages bloom into multiple dimensions of power, culture, community, and meaning. As anthropologist Bonnie Urciuoli writes: “Most of what we see, hear, and sense would be shapeless were it not codified, that is, systematically laid out as discrete concepts and relations. Much of the codification lies in the structure of language itself, in the semantics and grammar of words and sentences. At the same time, language comes to life because it is something people do with each other. As a language becomes action, concepts become real” (Urciuoli 1996:1, emphasis by author). Language ideology considers the sociocultural set of beliefs that constitute this multi- dimensionality of languages and may be defined as “The cultural system of ideas about social and linguistic relationships, together with their loading of moral and political interests” (Irvine 1989:255). Language ideology connects the language practices of individuals and populations to the overlaying politico-economic and sociocultural forces that surround them. As linguistic anthropologist Paul Kroskrity writes “The topic of language ideology is a much-needed bridge between linguistic and social theory, because it relates the microculture of communicative action to political economic considerations of power and social inequality, confronting macrosocial constraints on language behavior” (P Kroskrity in Woolard and Schieffelin 1994:72). When considering the dynamics of English-Spanish language use in the context of Puerto Rico, a framework of language ideology becomes essential. Without this framework, it is possible that “the social processes constituting languages in general (and meanings in particular) are hidden beneath their appearance of being just naturally, commonsensically ‘there’” (Fairclough 2015:122). Shaped by colonial legacy and complex power relations, English and Spanish are ‘loaded’ with very different social meaning in Puerto Rico and have been for over a century. English and Spanish were made by territorial law the official languages of Puerto Rico with the passing of the Official Languages Act of 1902 (Barreto 2020). However, Spanish 139 remained by far the dominant language among the Puerto Rican people as “…the practical effect of the 1902 law was to facilitate government activities for administrators from the United States mainland rather than create true parity between the two languages” (Barreto 2020:19). In 1991, a nationalist political wave briefly repealed this law and established solely Spanish as the official language of Puerto Rico but, by 1993, a new statehood-friendly administration restored a bilingual language policy (Barreto 2020, Torres-Gonzalez 2002). The use of the English language in Puerto Rico has historically been controversial and associated with a colonialist agenda. This is not surprising, as the classic Spanish grammarian Nebrija wrote “Language has always been the companion of empire” (1946:161). Throughout history, colonial powers have utilized, and one may argue weaponized, language use as a mechanism of expansion; tapping into the “…formidable capacity (of languages) to express, to symbolize, and to reinforce cultural and national identities, as well as to integrate and politically unify national populations and territories” (Torres Gonzalez 2002:372). Historically, the Puerto Rican education system has served as a battleground for English-Spanish language policy on the island: "From the beginning of American occupation in 1898, the issue of how much English to teach in the schools of Puerto Rico has plagued educators and politicians alike. […] To both nationalists and advocates of statehood, English in the schools has been viewed as a powerful vehicle for transplanting the norms and values of North Americans to the island. To nationalists, however, instruction in that language has represented a deliberate attempt to deprive Puerto Ricans of their own national character" (Epstein 1967:142). This dynamic of language policy and ideology persists today within the Puerto Rican educational system (Carroll 2016a, Pousada 2017). In her text ‘Being Bilingual in Borinquen’, Puerto Rican linguist Alicia Pousada writes that “Despite the longtime designation of Spanish and English as co-official languages, bilingualism remains controversial. […] While most Puerto Ricans 140 acknowledge the utility of English…many simultaneously view English with caution as a potential threat to their language and culture at a societal level” (2017:10). The perception of English as a potential threat to the preservation of Puerto Rican cultural identity has been foregrounded following the heightened political tension between Puerto Rico and the United States following recent events that have cast the island into turmoil. These events include the devastation of Hurricane Maria in 2017 and the national debt crisis which prompted President Barack Obama to pass the PROMESA Act in 2016 (For further discussion, see Chapter 3). Many on the island view the PROMESA Act, and the subsequent appointment of an oversight committee consisting primarily of Americans, as a ‘resurgence of colonial power’ on the island (Cabán 2018). The underwhelming federal response following the chaos of Hurricane Maria exacerbated these frustrations and was viewed by some as an extension of more than a century’s worth of exploitation and colonial neglect (Ficek 2018, Joseph et al 2020). The historical and contemporary association of English with the entrenched colonial legacy of American influence in Puerto Rico is an example of the ‘loaded’ nature of language use and practice, considering how “Language as code—English, Spanish, or any named language or dialect—is the tip of the iceberg and always rests on power relations” (Urciuoli 1996:9). These power relations are not limited to the national level but are also manifested on a local level via the dynamics of socioeconomic class. English language use on the island is associated with increased socioeconomic status and a mechanism by which to enhance one’s upward social mobility (Barreto 2020, Hermina 2014, Pousada 2017). Professor of political science and global studies Amílcar Antonio Barreto captured this association neatly, writing “While Spanish whispers to Puerto Rico’s heart, English tugs at its wallet” (2020:3). 141 As themes emerged through my interviews and observations regarding language practices and preferences, I became interested in English and Spanish language ideologies as they relate to the autism community. To investigate this further, I incorporated questions into my interviews with both parent and treatment/care provider cohorts that probed their beliefs surrounding English and Spanish, asking ‘In your opinion, how are English and Spanish used on the island?’ and ‘As a Puerto Rican, what are your thoughts about English and Spanish on the island?’. Spanish was universally reported to be the dominant language on the island despite the dual English-Spanish official language designation. During my interview with Janet, mother of a 14- year-old autistic daughter, she explained “English is used, but the official language is Spanish. Maybe in some federal offices or the Army they speak English. But I believe that the real official language is Spanish (Janet, interviewed August 29, 2019). Cecilia, mother of a 6-year-old autistic son, echoed those sentiments; “In school, at least in public school, all of the classes are in Spanish. The only class in English is English class…The truth is that in Puerto Rico, the principal language is Spanish” (Cecilia, interviewed August 24, 2019). Cecilia’s response speaks to a common ideology associating English language use with private school education, and therefore with increased socioeconomic class. During my interview with Carla, she gave a personal perspective on the matter and characterized Spanish as ‘the language of the Puerto Rican home’: “Look, I was born and raised in Puerto Rico and am a product of the Puerto Rican public school system. […] I can tell you that almost everyone speaks Spanish in the street, in the Puerto Rican home you will hear only Spanish. […] You see more the use of English in private schools. In public schools, you don’t see that” (Carla, interviewed March 7, 2018). Salma highlighted the linguistic division along socioeconomic class lines during our interview as well, “Look, this is not a bilingual country. The person who told you that was lying to you. 142 What happens is, the teaching and learning of English is directly related to the socioeconomic capacity of a person…if they have access to private schools that are in English” (Salma, interviewed August 29, 2019). And so, the consensus of the autism community members that I spoke with was that despite the dual official language designation, Spanish is by and large the dominant language used in Puerto Rico. Spanish was reported to be used ‘everywhere’ on the island and associated with the ‘Puerto Rican home’. As clinical psychologist and surf therapy instructor Marco said in our interview, “This is Puerto Rico. We use in the great majority Spanish here. Sure, English is very useful—but you have to speak Spanish if you are Puerto Rican and live in this paradise!” (Marco, interviewed May 13, 2017). English was most often reported to be used in areas associated with tourism, the military, and federal government agencies. Additionally, the ability to speak English was associated with access to private school education and increased socioeconomic status. Potential Implications of the ‘Little American’ Phenomenon In this section, I consider how English and Spanish are used in Puerto Rico to inform a discussion regarding the potential implications of this ‘Little American’ phenomenon within the Puerto Rican autism community. If we understand and accept that the decision to use English or Spanish in Puerto Rico is far from neutral but is in fact loaded with political and sociocultural implications that have been a century in the making, then it is important we also consider how the preferential use of English instead of Spanish by Puerto Rican autistic children may carry a diverse set of social and therapeutic implications for the thousands of autism families across the island. I begin by considering how Puerto Rican autism family dynamics may be impacted by the perceived English language preference of Puerto Rican autistic children. 143 Autism Family Dynamics According to the American Speech-Language-Hearing Association, one of the most important steps a parent can take to assist their child’s speech and language development is to “talk to your child in the language you are most comfortable using” (ASHA 2020). Studies focusing on bilingual and multilingual autism families have demonstrated that recommendations for monolingual language use in the home, especially when the recommended language is not the primary language of the home, may result in detrimental effects on the parent-child relationship and the ability of parents and children to communicate proficiently (Beauchamp and MacLeod 2017, Yu 2013, Hampton et al 2017, Fernandez y Garcia et al 2012, Soto and Yu 2014). A language barrier may present a further obstacle to meaningful connection between parent and child; "...maintaining an affectionate, natural way of communicating is of increased importance to parents of a child with ASD given their child's social and communication difficulties. As such, the beneficial impact of bilingualism on family relationships might be particularly salient for families of children with ASD” (Hampton et al 2017:444). Providers who recommend for Spanish-dominant families to speak more/only English in their households may unknowingly be demanding a much larger social and emotional investment from parents and family members who may struggle to convert their speech from their native Spanish into uncomfortable English (Fernandez y Garcia et al 2012). Therefore, it is quite concerning to have heard from several parents and providers on the island that it is not uncommon for Puerto Rican autistic children and their families to find themselves linguistically divided in their own homes. As an administrator at a local non-profit organization and as a mother to an autistic teenage daughter, Dolores was a key informant to this study and was close to many autism families on the island who sought her advice and networking 144 skills. During our interview, she remarked “There are so many families here where the mom doesn’t speak English, the dad doesn’t speak English, and what the child speaks is only English! We have seen it a lot here in Puerto Rico” (Dolores, interviewed March 8, 2018). Beatriz, mother of a 21-year-old autistic son and a non-profit organization administrator, reported seeing a similar trend: “There are many families that we see at events that don’t speak any English at all ((Beatriz makes a ‘zero’ sign with her index finger and thumb)). They can’t even say ‘Hello good morning’, but you meet their children, and they don’t speak any Spanish! I don’t know how that is supposed to work…They barely speak to each other; I don’t get it but what can you do?” (Beatriz, interviewed May 19, 2017). These findings suggest that preferential English language use by Puerto Rican autistic children may have unintended consequences for the autism family unit, including the parent- child relationship and the formation of familial social connection. Furthermore, it is possible that these potential negative impacts may be most exacerbated in the instance of a monolingual English/English-dominant autistic child living in a monolingual Spanish/Spanish-dominant home. Social Marginalization In addition to possible negative effects on the autism family dynamic, this linguistic division may also exacerbate the social marginalization of the Puerto Rican autistic child. In her study examining language use and ideology in Chinese-English bilingual immigrant households of autism families, Betty Yu writes “Language not only mediates a child's participation in the most intimate moments of family life, but also allows the child to join the world at large” (Yu 2013:21). As Spanish is by far the most dominant language used within Puerto Rican communities, monolingual English or English-dominant bilingual autistic children and their families may find that this language barrier exacerbates already significant social challenges. 145 Socializing with their peers and within their community can be difficult for many autistic people. Common challenges to social interaction include difficulties in understanding and successfully incorporating verbal and nonverbal social cues in accordance with social norms, establishing a joint frame of reference (i.e., ‘being on the same page’), and establishing social emotional reciprocity (i.e., displaying empathy) (Carter et al 2005, CDC 2020c, Lai et at 2014). It is important to note, however, that just because it may be more challenging for an autistic individual to engage in sustained social interaction and ultimately form meaningful relationships with family, peers, and potential romantic partners, that does not necessarily mean they do not desire this social engagement. In fact, social isolation and the longing for social connection has been reported to take a significant mental and emotional toll on autistic individuals whose attempts to establish social relationships and networks result unsuccessfully (Müller et al 2008, Bagatell 2007, Ochs and Solomon 2010). Quinta spoke about some of these social difficulties regarding her autistic daughter Carolyn. Carolyn is 10 years old and has a diagnosis of high-functioning autism. She is an honor roll student at her public school, where all classes are in Spanish. According to Quinta, the main features of Carolyn’s autism manifest in her sensitivity to loud noises, rigidity to her routines, her ‘obsession with ecosystems’, and her social difficulties. Here is a portion of my interview with Quinta: Quinta: My daughter has atypical autism, like mild. In the beginning, she only spoke English and people would ask me, ‘why does she only speak English?’ They marginalized her sometimes because of that…she would cry about it, asking me ‘Mom, why don’t they like me?’. You know how it goes. ((Carolyn pokes her head out the front entrance and asks her mother for a snack)) Interviewer: [In English] Hi Carolyn! How’s it going? Carolyn: [In English] Mom! Quinta: I know sweetie. She speaks English too. She is from the United States and is visiting. 146 Carolyn: [In English] This is better. Can she come inside? I want to show her my new ecology book. It is in English, she would like it. Quinta: [In English] Later Carolyn. [Transitions back to Spanish] Sorry about that. She loves when people speak English. I try, but my tongue is Puerto Rican! (Quinta, interviewed May 29, 2017) According to Quinta, her daughter experienced social marginalization because of her preference for speaking English. In my interview with Paulina, an educational psychologist, she theorized that the preference for English language use may heighten the barrier to social relationships for the autistic population; “I think maybe their fascination with English causes some difficulties on the social level…being here in Puerto Rico, it is difficult to cultivate social relationships with peers if you only speak English” (Paulina, interviewed May 15, 2017). These community perspectives highlight the importance of considering the potential implications of English-Spanish language preference on the social lives of Puerto Rican autistic children and their families. While proficiency in two or more languages has been associated with increased self-rated social quality of life in autistic populations (Digard et al 2020), the complex and at-times tense language ideologies on the island require us to look more closely at what may accompany language recommendations for Puerto Rican autism families in terms of social inclusion and integration. Most obvious is the concern of a straightforward language barrier between English-speaking Puerto Rican autistic individuals and the broader Spanish-dominant society in which they live. Putting it bluntly, if it is for whatever reason already hard for a child to make friends, it only gets harder if they are not speaking the same language as those would-be friends. That being said, a more nuanced conversation can be had if we keep in mind the language ideologies at play. The languages we speak, as individuals and as a community, are culturally capable of both dividing societies and binding them together. As Kroskrity writes “Language, 147 especially shared language, has long served as the key to naturalizing the boundaries of social groups” (2000:23). Therefore, it is essential that further consideration be had regarding how an autistic individual’s preference for the English language, which may index an identity of ‘outsider’ or ‘American’, may further exacerbate their social marginalization within Puerto Rican communities. Availability of and Access to Linguistically Appropriate Autism Resources Along with the potential impact on the Puerto Rican autistic child’s family dynamic and social inclusion, the ‘Little American’ phenomenon has the potential to impact access to appropriate autism treatment, interventions, and community resources. Given Puerto Rico is a predominantly Spanish-speaking country, the primary language of most health care, education, and related services professionals on the island is Spanish. While increased education level is associated with higher rates of English proficiency on the island (Maldonado 2000, Pousada 1999), studies have shown that students pursuing higher education in Puerto Rico demonstrate varying levels of English proficiency (Carroll 2016b). Therefore, it is important to consider if English language preference in the Puerto Rican autistic population may result in decreased availability of and access to linguistically appropriate autism resources such as bilingual speech therapists, physicians, teachers, and paraprofessionals. To promote maximum accuracy and efficacy, therapies and resources for the autistic patient population should be made available in the patient’s and family’s primary language; “…therapists are required to assess accurately the speech and language skills of bilingual children if they are suspected of having a disorder. Cultural and linguistic diversity means that a more complex assessment procedure is needed, and research suggests that bilingual children are at risk of misdiagnosis” (De Lamo White and Jin 2011). During my interview with Carla, she expressed a similar concern: “Unfortunately, we see 148 sometimes in evaluations that the child speaks English, but they were evaluated in Spanish. And they are going to end up appearing to have a severe delay in receptive and expressive language, when that is not necessarily true” (Carla, interviewed March 7, 2018). If it is the case that a greater than anticipated portion of the Puerto Rican autistic population consists of monolingual English/English-dominant language users, then concentrated efforts need to be made to increase the amount of bilingual autism treatment/care providers on the island. However, this may not be so easy as the island must compete with the high demand (and much higher salaries and benefits) from the United States for bilingual Puerto Rican health care professionals. Health care professionals are being actively recruited to mainland United States, where both their bilingualism and biculturalism are highly valued given the steep rise in Hispanic/Latino populations (Perreira et al 2017, Alcorn 2017, Patron 2017). This situation may disproportionately impact the autism community of Puerto Rico if indeed the population requires a disproportionately high amount of bilingual health care and education professionals. Within the Puerto Rican autism population itself, the limited amount of bilingual autism treatment/care providers may disproportionately impact lower socioeconomic status autism families. As was mentioned earlier in this chapter, bilingual or monolingual English language instruction in schools is confined largely to the private school sector and therefore is much more readily available to families of higher socioeconomic status who are able to pay tuition (Barreto 2020, Carroll 2016a). As will be further discussed in the next chapter, autism families access much of their needed autism therapies and interventions through their child’s academic institution and autism families of lower socioeconomic status depend heavily on the public school system for their child’s autism resources. Therefore, it is possible that the families of 149 monolingual English/English-dominant bilingual autistic children may be at a disadvantage in their pursuit of linguistically and therapeutically appropriate autism resources. Future Directions The ‘Little American’ phenomenon was an unexpected theme to emerge from my study and offers many avenues for potential investigation, far too many that can be covered within one chapter. In this short section, I outline a few of these potential investigative avenues that I would urge future researchers to pursue. It may prove fruitful to investigate further the impact of the ‘Little American’ phenomenon on the identity-building practices of Puerto Rican autistic individuals and their families. The Spanish language is a core component of Puerto Rican culture and fluency in the Spanish language—particularly the Puerto Rican Spanish dialect—is a key identity marker to being a ‘Boricua’ (Torres Gonzalez 2002, Zentella 1997, Duany 2002). Are autistic Puerto Ricans, already neurological and, in many instances, linguistic outsiders, at risk of becoming sociocultural outsiders as well? Is the affectionate term ‘americanito’ [little American] simply a reference to their English language use or are these Puerto Rican autistic children really being perceived as more American than Boricua? And if so, does this have the potential to further exacerbate their social marginalization and/or exclusion from Puerto Rican society? Another potential research topic would be to examine if there is a positive correlation between English language preference of Puerto Rican autistic children and increased socioeconomic status of the autism family. In this study, the sample of reported monolingual English/English-dominant Puerto Rican autistic children (n=12) were from autism families of varied socioeconomic statuses ranging from reported annual household incomes less than $10,000 to greater than $100,000. A larger study would be indicated to determine if autistic children who prefer/only speak English are more likely to be from a higher socioeconomic class. 150 This is a critical area of investigation because if this is not the case, then there may be an urgent need to assess the availability of English language resources and specialists for lower socioeconomic status autism families on the island. Lastly, it was outside the scope of this study to examine how interviewed parents and autism treatment/care providers determined the child’s English/Spanish preference and proficiency. It is possible that a child’s seemingly increased proficiency in English compared to Spanish may be an artifact of Puerto Rican society’s lower threshold to meet language proficiency for English as compared to Spanish. Given Spanish is the dominant language on the island, it is possible that the commonly accepted level of proficiency to achieve a determination of fluency/native speaker status in the Spanish language is much higher than the proficiency one would need to achieve that same determination in the less commonly used English language. Conclusion In conclusion, in this chapter I have explored what I term as the ‘Little American’ phenomenon, a surprising finding to emerge from my study in which many members of the Puerto Rican autism community with whom I spoke reported that they believed Puerto Rican autistic children are more likely to prefer to speak English despite living in a Spanish-dominant society. The two prominent rationales supporting this belief were: 1) English is believed to be ‘easier’ than Spanish, and 2) Puerto Rican autistic children are more ‘technologically gifted or inclined’, and English is the ‘language of technology’. I contextualized the ‘Little American’ phenomenon within a framework of language ideology by considering the sets of cultural beliefs—informed by complex political ties, nationalism, and a deep-rooted colonial legacy—that surround English and Spanish language use on the island. I then utilized this language ideology framework to explore the potential 151 implications of this phenomenon on autism family dynamics, the social marginalization of the autistic child, and on the availability of and access to linguistically appropriate autism resources in Puerto Rico. I closed with a brief discussion of potential future directions to continue this line of investigation. The autism studies literature is clear on where the autism professional community stands in terms of bilingualism in the context of the autism family: “Based on current evidence, children with ASD can become bilingual and bilingualism does not lead to further language delays. Furthermore, research has shown detrimental effects for both the child and their family when children with ASD from bilingual contexts are raised as monolinguals. Current evidence therefore supports the recommendation that children with ASD from bilingual contexts be raised bilingually” (Beauchamp and MacLeod 2017:250). What the findings presented in this chapter suggest, however, is that decisions regarding language use in the autism family are often not so simple. These decisions are not made within a cultural vacuum, but instead are constructed within a vortex of English-Spanish language ideologies tracing back to centuries of associations with politics, nationality, socioeconomic class, and cultural identity. Therefore, it is crucial that our understanding of language development and linguistic practices within the Puerto Rican autism community, and autism communities around the world, be informed by the local politico-economic, historical, and sociocultural context in which this neurodevelopmental disorder is lived. In the next chapter, I argue that this locally and socio-culturally informed approach is also essential when considering how Puerto Rican autism families navigate the complex and challenging infrastructure of the island to access the critical, though frequently scarce, medical and educational resources needed for their autistic children. 152 ‘Fight for your Child’s Rights’: Autism Resource Navigation in Puerto Rico CHAPTER 8: 153 Just as I began my interview with Coralys, mother of a 9-year-old autistic son, her husband came by to ask her where she parked the car. She smiled at him, flipped her long dark hair over her shoulder, and jokingly said “Just a second, my love. Can’t you see I’m in the middle of an interview? I cannot disappoint my fans!” A group of parents and I were sitting on the sand waiting for a surf therapy session to finish and we all laughed at Coralys’ antics; all of us in on the joke comparing my research interview to a celebrity exposé. After offering to do our interview later in the day in a more private location, Coralys declined and insisted we conduct our interview right there on the beach. As we continued our interview, the tone became much more serious. When I asked Coralys about how she as a mother navigates the many challenges of accessing autism resources for her 9-year-old autistic son, who is non-verbal, experiences intractable seizures, and relies on his caregivers to spoon-feed him and change his diapers, she said to me in a fiery voice: “One time, a regional education director said the worst thing that you can say to a parent of a special needs child. She said to me ‘I know how you feel’.” A couple of other parents on the beach nodded their heads in agreement. Coralys continued: “And I said to her, do you have a special needs child? No, right? Then do not dare tell me you know how I feel. You can be empathetic with me. You can perceive how I am feeling, but you do not feel what I feel. Having to wake up every day and figure out how I will pay the one hundred medication bills, the one hundred therapy bills, and come here to fight with people like you. You will get up after this meeting, go out to lunch with your neurotypical son, and you will forget my child. I will not. I cannot! I can never forget” (Coralys, interviewed May 13, 2017). Coralys was among the first parents I interviewed for this study, but her words would echo throughout all of my interviews (n=35) with parents of autistic children on the island. Their stories regarding their journeys to access the needed medical and educational resources for their autistic children share many common threads: the challenges of navigating a complex, often lacking health and educational infrastructure, the need to ‘fight’ for their child’s rights, and their most pressing worries as they anticipate their child’s future in a country that offers little 154 opportunities for the neurodiverse. These concerns were also shared from the perspective of interviewed autism treatment/care providers (n=32), who are aware of the many challenges Puerto Rican autism families face but are left seemingly helpless to intervene within a system that is crumbling around them. In this chapter, I will explore issues of autism resource access and availability in Puerto Rico from the perspectives of autism families and autism treatment/care providers on the island. The term ‘autism resource’ for the purposes of this dissertation may be defined as any medical, educational, or community-based intervention, therapy, activity, or source of support. Some common examples include pediatrician office visits, occupational therapy, parental support groups, and adaptive sports programs. I begin with a discussion of various issues of autism resource access and availability encountered by Puerto Rican autism families. Throughout these discussions, I note how these issues were exacerbated following the damage wrought by Hurricane Maria. I then turn my attention to a common theme that Coralys mentioned—the ‘fight’ for the rights of autistic children to health care and an appropriate education. I follow this with a discussion of how these various challenges are compounded by the stigma experienced by autism families within broader Puerto Rican society. After examining these significant issues experienced by Puerto Rican autism families navigating the island’s autism resource systems, I explore how these challenges have been mitigated by the presence of community-based recreational/alternative autism family therapeutic (CRAAFT) activities on the island. I close my chapter by examining what one parent described as ‘every autism parent’s worst nightmare’, the lack of resources and support for Puerto Rican autism families as the autistic child transitions into adulthood. 155 By exploring the various challenges encountered by autism families navigating autism resource systems in Puerto Rico, I support the main argument of this dissertation: that in order to facilitate a nuanced understanding of the autism, as both medical disorder and lived social phenomenon, we must consider the local politico-economic and sociocultural realities in which this neurodevelopmental disorder is lived. Through the lens of autism resource navigation, this chapter highlights how socioeconomic status, political strife, and natural disaster all combine to shape the unique Puerto Rican autism family experience. Autism Resource Access: Issues of cost, care, and coverage During my interviews with parents, I asked “What challenges have you faced when accessing autism resources for your child and family?”. Every parent interviewed, regardless of their socioeconomic strata (delineated in Chapter 4, Table 1), described the difficulty of affording the many expensive medical and educational resources that their autistic children needed. In my interview with Lizbeth, mother of a 12-year-old autistic son, she described her experience attempting to secure a visit with a pediatrician specializing in developmental disorders without insurance coverage: “We paid for the consult, $100 out of pocket. Then she said she does not accept any insurance plans…the cost of the program she spoke about was about $3,000. I don’t know how many sessions or what exactly those sessions were because honest to God I think I blacked out the second she said $3,000” (Lizbeth, interviewed August 27, 2019). Lizbeth and her husband Pablo, whom I interviewed jointly, went on to describe how they returned to their car stunned after that initial pediatric consult. Their annual household income falls into the $11,000-$20,000 bracket and the exorbitant $3,000 cost was simply unfathomable. They were left to find unspecialized pediatric care elsewhere. Lizbeth and Pablo did not have health insurance as they had just returned from the United States following a 2-year 156 stay. They, like thousands of other Puerto Ricans, left the island following Hurricane Maria; “We left here within 3 months of Maria. We left because well, the hurricane destroyed our house. We had a complete loss. We had nothing left” (Lizbeth, interviewed August 27, 2019). I quickly realized through conversations with both parents and providers on the island that the experience of autism families who are able to pay privately for their child’s needed resources differs greatly from the experience of autism families who must depend on government-provided resources. In Puerto Rico, there is a publicly available program provided by the Department of Health called Avanzando Juntos [Moving Forward Together], which provides a free early intervention program for developmentally delayed children ages 0-36 months for either local or in-home therapy and training to aid in the child’s development (Puerto Rico Department of Health 2020). Once children reach school age, from 3 to 21 years old, autism families may apply to the Department of Education for publicly available, limited therapeutic services such as speech or occupational therapy. However, parents reported that these services are often inadequate in meeting the needs of their autistic children. In my interview with Tony, father of a 3-year-old autistic son, he said: “Only those who have the money can afford to pay for private therapy. Only they can enjoy that privilege. In my son’s case, the government-provided therapies are minimal. Two therapies a week, 1 occupational and 1 speech. The rest of the therapies he needs, 5 therapies a week, are paid for by us” (Tony, interviewed August 24, 2019). Even those autism families who are able to obtain private insurance through their employer expressed their frustration with the gap between the amount of therapy visits insurance plans cover and the amount of therapy visits actually required by their autistic children to help meet their developmental milestones. Magdalena, mother of a 3-year-old autistic son, explained that in order to fill this gap, she had to make sacrifices, “You have to start limiting yourself…I put less gas in the car or I buy less at the grocery store and try to make it last longer, because I have to 157 save money to pay for the occupational therapy my boy needs” (Magdalena, interviewed August 27, 2019). As Magdalena noted, parents of autistic children are often left to find creative ways to pay for autism resources despite having private insurance coverage. Many parents reported that their private insurance plans addressed these gaps in coverage by offering reimbursements for resources that are not initially covered. Mariela, mother of a 16-year-old autistic son, described her experience with having to go into debt due to this system of coverage: “We think that we will receive reimbursement right there in the moment, and that just doesn’t happen with these children…most of my family, including myself, are in debt due to this. […] Many families from here are in that situation, some even have to go sell cakes on the street to pay for medical services, to pay for therapies, to pay for medical appointments, for medication not covered by insurance if they even have insurance. The entire family is affected by this” (Mariela, interviewed May 30, 2017). These systems operating on reimbursement have been critiqued within the anthropological literature as functioning on the flawed concept of ‘moral hazard’, or “the idea that people would purchase insurance with an eye toward using it, which violated the central insurance principle of protection against unanticipated risk” (Hoffman 2006:504). In order to prevent their enrollees from ‘abusing’ insurance benefits, insurance companies operate under practices such as requiring a buy-in of a substantial deductible or only covering services once they have been paid for ‘up front’ by patients and their families. This has been problematized by anthropologists who argue that this practice ultimately functions to shift blame from the shoulders of corporate insurance onto the shoulders of individuals attempting to access care (Dao and Mulligan 2016). Anthropologist Jessica Mulligan, whose research has focused on health maintenance organization (HMO) insurance companies in Puerto Rico, describes this system as disproportionately affecting populations with disabilities, such as autism, writing “Neoliberal policy makers tend to ignore disability and dependency in favor of able-bodied conceptions of 158 calculating consumers” (Mulligan 2014:99). And so, Puerto Rican autism families who are navigating this system of insurance and reimbursement are left with little options to afford the resources and services that their children need. For those parents who are unable to afford private insurance in Puerto Rico and who qualify on basis of household income, there is the government-provided Medicaid insurance plan known as La Reforma (for further discussion on La Reforma, see Chapter 3). While autism resources such as doctor’s visits are covered with little to no out-of-pocket payment for families under a Reforma plan, accessing resources through this route presents its own set of challenges. One of these challenges is extremely long waiting lists; Raquel, a social worker and services coordinator, told me in our interview: “For those physicians that accept Reforma, normally the waiting list is a year or more. I have a mom, really several parents, who told me that 2017 appointments have already been filled. They have to wait for the upcoming year. They have no way to pay privately, so what can we do? […] It is difficult as a services coordinator because my function is to support them, but I feel like my hands are tied” (Raquel, interviewed May 12, 2017). I interviewed Ramona, mother of two autistic sons ages 5 and 14, about her experiences accessing autism resources while covered by La Reforma. Her situation is an interesting one as her eldest son is privately insured through his father’s plan, but her younger son, who has a different biological father, is covered only through La Reforma. She described how she was unprepared for how drastically different it would be trying to navigate the Puerto Rican health care system under the government plan as opposed to a private plan. Ramona told me that in her experience, “It is very difficult to find resources because the people who are in charge of administration of funds seem to think the money is theirs and that the therapies and treatment costs are coming out of their own pockets. And to get them to approve something, you have to beg” (Ramona, interviewed May 25, 2017). Ramona then elaborated on the embarrassment she 159 felt having to plead with public insurance administration to cover her younger son’s occupational therapy sessions, noting how she felt ‘everyone’s judging eyes’ on her in the office. This stigma associated with the use of public Medicaid programs has been demonstrated to be harmful for patients attempting to access needed resources for themselves and their families (Martinez-Hume et al 2017). Privately and publicly insured parents reported high costs of autism resources to be a significant challenge to accessing these resources for their children. While limited services are available with coverage under La Reforma, parents are left with very limited options and long waiting periods. On the other hand, privately insured parents reported covered resources and services frequently were inadequate and therefore were required to pay out-of-pocket to make up the difference, and sometimes incur significant debt in the process. In my interview with Paulina, an educational psychologist, she described a situation she commonly sees in her practice— autism families whose household income is too high to qualify for La Reforma but is still too low to be able to afford costly private insurance plans: “Many plans function on the basis of reimbursement…those who do not have the means to pay for the therapy up front, they don’t get services. So, they have to apply for the government’s public plan. But also with that, there is the income question…if you are a person in the lower middle class, you won’t qualify for the public plan…but you also cannot pay for the private plan…there are families who realistically have no options. And because of that unfortunately, their kids go without any services” (Paulina, interviewed May 15, 2017). And so, parents are caught in a situation of insurance Catch-22—they are at once too wealthy and too poor to access the resources and services that their autistic children require. 160 When the Care Just Isn’t There: Issues of autism resource availability In addition to describing the financial challenges autism families face while attempting to access and afford autism resources on the island for their autistic children, parents with whom I spoke also noted that these resources and services their children needed are often unavailable to families where they lived. For example, during my interview with Lizbeth and Pablo, parents of a 12-year-old autistic son, Lizbeth described their 7-hour total commute to two different therapy sessions. I expressed my shock at this long commute, but Lizbeth and Pablo just laughed; “We do this a couple of times a week” Lizbeth said, “…finding therapies and activities has been an uphill battle because it is not something you find just next door…we have to travel over 2 hours just to get there. There are no resources that are close by” (Lizbeth, interviewed August 27, 2019). Figure 13 below offers a Google Maps depiction of the total commute, noting that the travel time marked in the figure does not account for traffic. Figure 13: A Typical Day Seeking Autism Services for a Rural Puerto Rican Autism Family (Map Configured by Author Using Google Maps 2021) Figure 13 displays Lizbeth and Pablo’s typical commute from their home in the rural inland municipality of Jayuya to pick up their son from his grandmother’s home in the southern 161 municipality of Ponce. From there, they make their way to the western municipality of Mayagüez where the only specialist’s office who treats their son’s rare metabolic disorder is located. After this 20-minute appointment, they make their way through substantial traffic to their son’s social coaching peer group in Guaynabo, an urban municipality close to the capital. After this appointment, they grab fast-food on the road before returning home again to Jayuya. Their entire family’s day is spent traveling the island in a 2-door, unairconditioned 1995 vehicle for a sum total of 1 hour and 20 minutes’ worth of autism services. They do this at least twice a week on top of their jobs and their search for affordable permanent housing. While autism families living close to the autism resources clustered in the metropolitan areas of Puerto Rico face less geographic barriers when compared to autism families living in rural areas of the island, there are some much-needed autism resources and services that are near impossible to obtain no matter where you live on the island. One of these resources is the ability to see a physician specialist. As discussed in Chapter 3, there is a significant shortage of physicians practicing in Puerto Rico, therefore appointments with specialists like geneticists or child neurologists can be hard to come by for autism families. When I asked Beatriz, mother of a 21-year-old autistic son, about the challenges facing Puerto Rican autism families attempting to access the resources and services their children need, she responded, “The waiting lists and the lack of specialists, the lack of good specialists! [...] The specialists, well I’m not going to put all the blame on them because sometimes they just don’t get paid. […] Because of this, the waiting list is very long for specialists focusing on autism” (Beatriz, interviewed May 19, 2017). Autism treatment/care providers whom I interviewed also viewed a lack of specialists on the island as a challenge for the autism community. Marco, a clinical psychologist and surf therapy instructor, spoke to me about the ‘exodus of the Puerto Rican health professional’ to the United States: 162 “We have had a massive exodus of health professionals because these professionals are bilingual and certified and well-prepared to practice in the United States, and we do it cheaper! Because Puerto Rican people don’t realize that they are accepting contracts that are much lower than others…We have lost a lot as an island. But these people that leave are forgetting a very important principle, that this is our home. That this is our country!” (Marco, interviewed May 13, 2017). In addition to the scarcity of physician specialists in Puerto Rico, parents and providers alike noted the lack of Applied Behavioral Analysis services to be a significant challenge for autism families on the island. Applied Behavioral Analysis (ABA) is a therapeutic modality emphasizing behavior-environment interactions/behavioral reinforcement and relies on rigorous data collection in the form of functional behavior assessments (Roane et al 2016). Therapists certified in ABA are known as Board-Certified Behavioral Analysts (BCBAs) and the goal of ABA is to improve communication and social interaction skills in addition to addressing atypical and/or non-functional behaviors (Roane et al 2016, Autism Speaks 2021). ABA is often recommended as the ‘gold-standard’ in evidence-based autism treatment (Fisher et al 2019, Autism Speaks 2021, McPhilemy and Dillenburger 2013), but has faced notable criticism from researchers and autism self-advocates (Kirkham 2017, Gurson-Wood 2016). Licensed BCBAs offering ABA services are highly limited in Puerto Rico and while their services are not readily available for most autism families on the island, some parents who have obtained ABA therapies for their children identified these therapies as crucial to their child’s development. For example, when I asked Naomi, mother of a 19-year-old autistic son, which autism resources were most important to her as a mother, she responded “Of all of them, those that involved behavior modification, ABA. Because what do I care if he learns to add, multiply, or divide if he can’t even talk to someone? If he can’t express himself?” (Naomi, interviewed May 18, 2017). 163 During my interview with Paulina, an educational psychologist, I asked her what resources she thought were most important for autistic children and she promptly answered, “ABA is the only method that is scientifically proven to function for children with autism”. She then shook her head and continued, “I think that there are only 5 BCBAs in Puerto Rico…here in this country, medical insurance plans do not cover ABA” (Paulina, interviewed May 15, 2017). Paulina’s approximation of 5 BCBAs available on the island for the entire autism population was corroborated by Renee, a licensed BCBA practicing in Puerto Rico. During our interview, I asked Renee why she thought ABA therapy was not a more widely utilized approach in the Puerto Rican autism population. She explained: “It is because the cost! We are talking about intensive therapy. We are talking about 2-3 times a week…the parents need to put a lot of money into it. We are right now fighting for health insurance coverage…We only have one mother here that gets a reimbursement, but it takes 3 to 4 months to get money back…right now, the only people who have access to ABA are people with money” (Renee, interviewed May 16, 2017). Renee emphasized the ‘intensity’ of an ABA approach, which recommends a minimum of 25 hours per week of therapy (Roane et al 2016). Given that ABA is not an approved therapeutic option under most insurance plans including La Reforma in Puerto Rico, this greatly diminishes the amount of autism families who are able to afford such an expensive course of treatment. However, I did speak with parents like Michelle who described how they had to be creative in their attempts to find ABA services for their autistic children. Michelle, mother of a 21-year-old autistic son, explained how she managed to provide ABA therapies for her son: “I managed to get it by asking the local university to send over students that were in the special education program. The ABA program was done through volunteers, I did not pay for it because I did not have the money to pay for it. It was impossible! …You cannot take it for granted here. You have to try to find it, but it is not easy!” (Michelle, interviewed May 30, 2017). Michelle is also an administrator at a private school for developmentally diverse students and her school is one of the very few educational institutions that offer any ABA services on the island. 164 This school manages via local therapists who are supervised by a licensed BCBA working remotely from Spain. And so, what options are there for autism families who are seeking ABA therapies, consults with physician specialists, and any of the various other autism resources and services that are not available in Puerto Rico? For many parents whom I interviewed on the island, the only option for finding these needed autism resources was to consider a monumental change for the entire family—leaving their home country to seek these resources in the United States. In my interview with Roxana, mother of a 2-year-old autistic son, she described how her family members urged her to consider moving to the United States upon hearing of her son’s diagnosis: “My mom thought I could handle him here, but my dad…it bothered him a lot because he knows that here in Puerto Rico there are not as many treatments and doctors like in the United States. And well, here it’s like a given that if the boy has autism, now you have to move or at least travel abroad to receive services. That here, they are not going to treat him the same” (Roxana, interviewed May 23, 2017). I interviewed autism treatment/care providers who cautioned autism families against making this decision to leave Puerto Rico. Marco, clinical psychologist, remarked: “…When they go to the United States, they lose something that is very, very important, the support of family. Who is going to pick up the kid when you are working and cannot leave? Here, the family support is here when you need it. The family is part of our culture here…the majority of Puerto Rican families support each other and are very united. These are parents and families who want to help their children” (Marco, interviewed May 13, 2017). I conducted a follow-up interview with Hilda, mother of a 14-year-old autistic son, six months after Hurricane Maria. She discussed how she, like many autism families, seriously considered leaving Puerto Rico during those dark times. However, she ultimately opted to stay on the island due to the reason Marco highlighted—the importance of family support. “I saw many parents who thought about moving to the United States. In some moments, I thought the same…I decided to stay here because here we have people who will support us, my parents help me a lot with him. Living by myself in the United States would be very difficult” (Hilda, interviewed March 7, 2018). 165 And so, given the significant obstacles—clustering of autism resources in metro areas and the unavailability of critical resources like physician specialists and ABA therapists—some autism families must consider leaving their country and moving to the United States. However, this decision comes with its own set of challenges, including a lack of family support. ‘Fight for Your Child’s Rights’: The Department of Education and Remedio Provisional In this next section, I will explore a prominent theme that surfaced throughout my interviews with parents and providers regarding how Puerto Rican autism families must ‘fight for their child’s rights’—most frequently their right to an appropriate and adequate education. I found quite often that this fight would be taken to the courts, with autism families filing querellas [legal complaints] against the Department of Education. As Coralys, mother of a 9- year-old autistic son, told me in our interview, “If you don’t have a lawyer or if you don’t even know a lawyer, you’ll get nothing on this island” (Coralys, interviewed May 13, 2017). Autism families often find that their children’s educational needs go unmet by the Department of Education on the island. This is not an inherently malicious denial of services on the part of the Department of Education, but rather is an issue of struggling educational infrastructure and frequently a lack and/or mismanagement of funds. As a result of the groundbreaking case Rosa Lydia Velez vs the Department of Education of Puerto Rico (Case #KPE-1980-1738) first filed in 1980, these families were granted a legal avenue through which they may pursue a path towards appropriate and adequate education using a process called Remedio Provisional [Provisional Relief]. If the family can prove that the Department of Education is not complying with the federal mandate ordered by the IDEA law and Law 51 of 1996 to grant an appropriate and accessible education for all children, they are then entitled for the costs of these educational resources to be covered by the government through Remedio 166 Provisional (PR Department of Education 2018). The unfortunate situation of autism families having to resort to legal complaints to access basic educational rights for their children has been critiqued within the literature, as Mulick and Butter write “It is recommended that school districts consider legal standards as programs are designed, that programs fit the unique needs of the child, that programs ensure appropriate progress educationally and socially, and that communication between parents and school districts be open and honest so that the due process system is used as the last resort” (2002:57). Many Puerto Rican autism families find themselves having exhausted all other options and end up in this ‘last resort’ situation all too frequently. Of the 35 parents whom I interviewed for this study, 15 parents reported having to file legal complaints to access the educational resources that their autistic children required. Diana, mother of twin 12-year-old autistic boys, handled the bulk of the legal legwork to access her sons’ needed autism services through Remedio Provisional. She shared her perspective during our interview, “The Department of Education is very bureaucratic, and they take a long time to find the treatment that you believe your child needs. Yes, many parents have managed it, but only after incurring all of the costs for lawyers and everything else to then manage to get the Department to take economic responsibility” (Diana, interviewed May 30, 2017). In my interview with Diego, father of a 13- year-old autistic son, he credited his wife, who had recently passed away due to cancer, for her hard work navigating the legal system to obtain services like handicap-accessible bus transportation for their son; “We had to fight… It was truly my wife who did all of that. Many tears, much anger, much frustration…we had to demonstrate they were violating his rights…and when we managed to prove that, then the Department agreed to give the services to us” (Diego, interviewed August 25, 2019). 167 During my interview with Tomás, a lawyer specializing in special education legal work in Puerto Rico, he lamented that the government infrastructure in Puerto Rico is overwhelmed by the demand of the educational and health needs of the developmentally diverse population, “The reality is that neither the Department of Health nor the Department of Education comply with the economic and human resources needed to tend to this population…Our health and educational systems are just not prepared to handle it” (Tomás, interviewed May 19, 2017). I found that this circumstance in which the high needs of autism families clashed with an overwhelmed education and health infrastructure in Puerto Rico has often resulted in parents of autistic children on the island feeling pitted against the Department of Education in a ‘fight for their child’s rights’. Bryan, father of a 6-year-old autistic son, described to me how one must approach the Department of Education with a ‘bad attitude’ in order to receive the services their child needs: “What happens is that when you go to the government or the Department of Education to ask them for help, you have to go de mala manera [with a bad attitude] because that’s just how it is... If you go in half-hearted, they’ll start to say ‘Oh…we’ll make a note and give you a call’. No! Let’s do it here. You’ll say yes or yes to me!” (Bryan, interviewed May 13, 2017). Hilda, mother of a 14-year-old autistic son, shared a similar sentiment, “In the Department of Education is where we have the most problems here. I have had to fight so much for the opportunities that my son has had. I have even had to hire lawyers. […] Let me tell you, more than society, more than the community, our biggest problem has been the Department of Education” (Hilda, interviewed May 27, 2017). Instead of feelings of partnership and mutual understanding between autism families and the Department of Education in Puerto Rico, stories like Bryan’s and Hilda’s demonstrate that this situation, rife with threats of legal battles, has resulted in autism families feeling as though they must muster the strength and willpower to engage in a tension-filled ‘fight for their child’s rights’. Therefore, much work remains to be done on the island to assure Puerto Rican autistic 168 children are able to access appropriate education and therapeutic services in order to facilitate their development and learning. ‘When He Howls, I Howl with Him’: Stigma experiences When I asked members of the autism community about challenges to accessing autism resources and services in Puerto Rico, I explained that for the purposes of this study one of those resources is community support. Community awareness, acceptance, and support have been demonstrated to be valuable to autism families by increasing positive coping skills and potentially decreasing parent stress levels (Hall 2012, Luther et al 2005). One of the most widespread and damaging barriers to community acceptance and support is stigma against the autism population (Liao et al 2019, Paula et al 2020, Kinnear et al 2015, Oti-Boadi et al 2020, Cohen and Miguel 2018). One study focusing on Latino autism families found that stigma against the autism population and the subsequently diminished community support was particularly challenging for Latino autism families and their familismo [familism], or the strong emphasis on the role of the nuclear and extended family, cultural values when compared to non- Latino autism families (Gordillo et al 2020:877). Parents whom I interviewed for this study described their experiences of stigma within Puerto Rican society. When I spoke with Coralys, mother of a 9-year-old autistic son, she described her exasperation and sadness when her son was ridiculed by his peers and even their parents; “I don’t understand why people are cruel and discriminate…it is not my son’s fault…One feels like they are not only making fun of him, but that they are making fun of you too” (Coralys, interviewed May 13, 2017). Parents described their experience of how a lack of autism awareness and/or the presence of stigma against the autism population has the potential to convert daily tasks like going into the grocery store into a very stressful event. In my interview 169 with Viviana, mother of a 20-year-old autistic son, she described her child being called a ‘brat’ when he experienced sensory meltdowns in public places: “Today there is much more autism awareness compared to 20 years ago when my son was born, but it still isn’t sufficient… there is always someone who will say the child is a ‘brat’…That kind of thing, people saying, ‘If that was my son, I’d give him a spanking and that would fix it.’ Saying those things makes it seem like all children with autism are just brats. It is so hurtful” (Viviana, interviewed May 26, 2017). When I asked Paulina, an educational psychologist, about the challenges facing the Puerto Rican autism community, she responded ‘The stigma.” I asked her to elaborate, and she continued, “We are still lacking a lot as a society to be able to understand…there are many parents that do not dare to go into public spaces…the families suffer a lot and feel like they can’t even leave their homes!” (Paulina, interviewed May 15, 2017). For some autism families, venturing into public spaces with their autistic children can be anxiety-producing as unexpected sensory stimuli and/or deviations in routine may trigger sensory meltdowns. During my fieldwork, I had the opportunity to accompany autism families during their day-to-day tasks. One of these trips was with the family of Manuel, a 13-year-old autistic boy. I witnessed Manuel experiencing distressing sensory overload from the loud music playing in the store, exacerbated by the unfortunate occurrence of his family forgetting his noise- cancelling headphones at home. When his mother had to break it to Manuel that his preferred cereal was out of stock—a significant deviation in his routine—for lack of a better term, Manuel just lost it. He dropped to the ground, knocking several cans of food off the shelves in the process and started to wail. His family acted quickly with an almost military-like efficiency, his father and brother swooping in to pick Manuel up and his mother searching her purse for her iPhone to play Manuel his favorite clips on YouTube. I was left standing in the grocery aisle as they hustled Manuel to the car. While I picked up the cans that had been strewn across the tile floor, I heard two older women whispering ‘Look at that malcriado [one who is poorly raised, a 170 brat]. He is too grown to be behaving that way! How embarrassing.’ I felt my face flush and quickly walked to the car to meet the family I came with. As I got into the car, Manuel had calmed down and was rocking in the back seat. His family was sweating and sitting silently. In a sheepish attempt to break the ice, I said “You know, I never liked that grocery store anyway. Thanks Manuel, you did me a favor!” The family laughed and commented that the store was not their preferred one because it was too expensive, but I noticed they drove directly home after that with no groceries. As I said goodbye to Manuel’s mother with a customary kiss on the cheek, she squeezed my hand and said, “We’ll try again tomorrow, yes?” In my interview with Magdalena, mother of a 3-year-old autistic son, she described a similar experience while attempting to go to the store with her son. However, she explained that she no longer reacts with embarrassment or shame if her son behaves atypically in public. She told me: “I go into the store and my boy would scream and cry and fall to the floor. Everyone would stare at me. Before, I’d cry in the car sometimes, asking God, ‘Why is this happening? How do I control this child?’ Now, no. Now, if he screams, I scream with him. I take it easy now. Sometimes when we go out, he makes this sound ((aaawwooo)), like how a wolf does, that howl. And now when he howls, I howl with him. The two of us go ((AAAAWWOOO)). If they are going to give him weird looks, then they’ll just have to give me a weird look too. It is people who are terrible, not us. Not my son” (Magdalena, interviewed August 27, 2019). For some autism families with whom I spoke, their experiences of stigma and lack of community support affected their ability to participate in typical childhood events—a common example being children’s birthday parties. During my interview with Lola, mother of two autistic sons ages 3 and 7, she explained, “As a mom, like all parents that have children with special needs, I need social support. Because honestly, as a mom, I feel really marginalized from society. For example, birthdays for children. They never invite us because my sons cannot be around loud sounds… one feels very alone in society” (Lola, interviewed August 27, 2019). When I 171 interviewed Hilda, she told me her autistic son rarely attended parties for neurotypical children. However, she also described how she was pleasantly surprised by her experience of throwing a party for her son’s 15th birthday. She told me: “We had his birthday party the other day and it was surprising to see how many people went—we were like ‘Wow! Look how many people love him!’ Almost every person I invited came to the party… it was so satisfying to me to see there are people who accept this population and with that gesture of spending some time sharing that important moment in the life of that child, it shows that our children’s lives and our lives as parents matter to society” (Hilda, interviewed March 7, 2018). Salma, mother of 16-year-old autistic son, explained to me how the stigma and lack of autism awareness in Puerto Rico has extended into her experience within the legal system. As a lawyer, she has represented several autism families in various court cases. When I asked about her experience, she told me: “Look, there needs to be a massive awareness campaign about what autism is and what autistic people need…I have found that even very educated people like judges, like prosecutors, they have no idea what autism really is. I took a case last year and I told the court that my client was disabled. The judge said to me, ‘But doesn’t he go to university? How is he disabled?’ And I said, ‘Well, he goes with a social coach’. You ask him about things he is interested in and he is a genius. But if you ask him to go to the supermarket to buy some milk? Or ask him to order himself a sandwich? He’ll starve! They need to understand that” (Salma, interviewed August 29, 2019). There has been a recent push for increased autism awareness in Puerto Rico, mostly coming from parent-run non-profit organizations like Autism Alliance. Major newspapers such as El Nuevo Día in Puerto Rico have run several stories advocating for increased autism awareness and inclusion to combat stigma autism families are experiencing on the island (El Nuevo Día 2021). Organizations have successfully lobbied for autism-focused events and opportunities on the island such as specific showtimes at movie theatres for the autism population. However, during my interview with Michelle, mother of a 21-year-old autistic son, she expressed hesitance at the idea of these types of autism awareness initiatives and worried that 172 they perhaps promoted the idea of segregating the autism community rather than including them. She explained: “Today, there has been a lot of awareness raised about autism in Puerto Rico…but for me, it has its pros and cons. For example, a showtime at Caribbean Cinemas only for children with autism. From my perspective, that is promoting segregation…I think that sometimes we do it more to accommodate parents than for the actual children and remember, I myself am a mother! [...] We don’t have control over everything that happens or will happen around and to them, so it is important that we expose them to everything we can…If we shield them, we are not providing them the tools to cope with it, tools that they will need after we are gone. And that is my very personal opinion. That doesn’t mean every parent with children with autism will agree, ok?” (Michelle, interviewed May 30, 2017). When I asked Hilda, mother of a 14 year-old autistic son, what she thought could be done to decrease this stigma in Puerto Rico, she paused for a moment and said wistfully, “I think that, in general, we could do it if we could all just contribute a tiny grain of sand each, to do a small something each to see a difference and carry the correct message about what this population needs and who we really are” (Hilda, interviewed May 27, 2017). The Role of Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) Activities Throughout this chapter, I have described the various challenges in resource access and availability encountered by Puerto Rican autism families. The high cost of autism services, the endless bureaucratic hoops to jump through, and societal stigma are all harsh realities in the lives of the Puerto Rican autism community. However, through my interviews with both parents and providers, an unanticipated finding regarding autism resources and support emerged: the role of Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) activities in the lives of Puerto Rican autism families. CRAAFT activities observed for this study included: surf therapy, adaptive riding/equine therapy, adaptive soccer, arts and crafts fairs, and eco- therapy. These types of recreational, alternative, and/or complementary therapeutic activities are the subject of a growing amount of research investigating their potential benefits and/or harms in 173 the development and quality of life of autistic children and adults. Equine therapy and other animal-assisted interventions have been demonstrated to be beneficial for children with various developmental disabilities (O’Haire 2013, Srinivasan et al 2018, Malcom et al 2018, Borgi et al 2016). Adaptive soccer has also been shown to be beneficial to general physical development and social skills for autistic children (Hayward et al 2013, Cei et al 2019, Barak et al 2019). And lastly, surf therapy has been shown to not only aid physical and social development in children with disabilities (Stuhl and Porter 2015, Cavanaugh and Rademacher 2014, Walter et al 2020), but also to be a significant source of social support for parents of participating children (Moore et al 2018). It is beyond the scope of this dissertation to examine whether observed CRAAFT activities demonstrated significant therapeutic impact on the development of participating autistic children. Rather, in this section, I will explore the general role these CRAAFT activities play in the lives of autism families from the perspective of parents of autistic children. Parental Perspectives on the Impact of CRAAFT Activities In broader neurotypical Puerto Rican society, it is the cultural norm to enroll children in recreational activities like the municipality’s youth basketball team or after-school dance lessons. However, parents within the autism community frequently expressed hesitance to include their children in neurotypically geared activities. When I asked Genesis, mother of a 22-year-old autistic son, whether she has enrolled her son in activities that were not specifically designated for special needs children, she responded “Never. I have never done that because I know that acceptance is a challenge and that they will reject him. It has been very clear. I have never signed him up for an activity that is not specifically for special needs children” (Genesis, interviewed August 29, 2019). 174 Some parents noted that though they actively sought activities where their children could participate, they struggled to find any options on the island. Lizbeth and Pablo, parents of a 12- year-old autistic son, spoke about this in our interview: Lizbeth: We have tried many things because my son himself is worried. He asks me ‘Mom what is my gift? What is my ‘thing’?’ And we tell him, you will discover your gift along the way…it frustrates him. With sports well, he is small, and he is not very athletic. That frustrates him because he wants to find his ‘thing’, he wants to find his North. Pablo: I think sometimes that I, as a dad, have failed him because there were moments when I thought he was not going to be able achieve what children without autism achieve. Maybe that was my mistake for not having put him in sports and activities from the beginning, with neurotypicals (Lizbeth and Pablo, interviewed August 27, 2019). In light of the hesitance and/or inability to include their autistic children in neurotypically geared activities, parents whom I interviewed described how CRAAFT activities were able to address this gap for the autism population. During my interview with Cecilia, mother of an 11- year-old autistic son, she described to me how her son has been bullied by other children when she attempted to include him in neurotypically geared activities. She described how she was worried about attempting to include her son in surf therapy because of that prior negative experience, “…I was fearful of that bullying when I came here, this is something new for me. But I saw how these children react to this therapy and I said I have to come back. Really, the changes we have seen have all been so positive” (Cecilia, interviewed August 24, 2019). When I asked Diego why he continues to bring his 13-year-old autistic son to surf therapy on the weekends, he responded, “First off, because he loves it. He has a good time and enjoys it. Second, his anxiety levels have diminished a lot and his attention levels have grown. It helped regulate his sleep…also, surfing has helped a lot with his body balance…it has helped to strengthen his core and he does not fall as much. He can go up and down the stairs alone now” (Diego, interviewed August 25, 2019). 175 While in field, I had the opportunity to interview Alex, father of twin autistic sons and founder of the adaptive soccer program Fundación Golitos [Little Goals Foundation], about why he decided to start this non-profit organization in Puerto Rico. We met for coffee at a local bakery and he told me the story behind Golitos: “I was born in Colombia, but I was raised in Puerto Rico. I arrived when I was 10 years old. When I was a boy, my dad gave me a gift that I have carried with me my whole life and one that I wanted to gift to my children, and that gift was soccer. […] When my sons were diagnosed, I started searching for where I could take them to learn to play but found nothing…I am a certified soccer coach and so from there I started taking courses to learn how to adapt soccer to children with special needs. […] The program uses methodology of adapted physical education and it is now a non-profit called Fundación Golitos [Little Goals Foundation]. In the beginning it was just my boys, and today we have had over 300 kids participate in our program!” (Alex, interviewed May 29, 2017). Figure 14: Fundación Golitos Adaptive Soccer Program Bayamón, Puerto Rico (Fundación Golitos Public Facebook Page, January 11, 2018) Alex emphasized how, in his experience, most CRAAFT activities are the result of efforts from within the autism community that work to create opportunities for the autistic children of Puerto Rico. He explained: “These activities are born out of a movement of people who are committed and have dedicated themselves to this population. They are not government initiatives and they are not from private companies. They are initiatives from the community itself. And from those roots, see how they have flourished!” (Alex, interviewed May 29, 2017). 176 Cost and Critiques of CRAAFT Activities Despite these parental perspectives supporting the availability and positive impact of CRAAFT activities, there remains a financial barrier to participation. Out-of-pocket expenses for CRAAFT activities I observed in Puerto Rico ranged from $5 (participation in an arts and crafts session) to $100 for a private adaptive horse-riding session. The average cost of a CRAAFT activity, such as a surf therapy session or soccer programming, was approximately $10-15 per session. I met Trisha, an adaptive riding trainer who offers lessons geared towards the autism population, at a local riding arena where she held her lessons. During our interview, Trisha described the difficulty of finding funding to support scholarships for autism families interested in adaptive riding lessons for their children. Trisha noted that things only became more difficult following the devastation of Hurricane Maria. She told me: “After Maria, we created a scholarship program, and a bunch of riders participate free of charge. We tried paying for their therapies with donations, fundraising, grants, but a huge majority of the time their classes just are not paid for...We are a non-profit organization…sometimes we are barely breaking even…We are kind of triply cursed being a non-profit, with the expense of horses, and in Puerto Rico. So, the fact that we even exist is an accomplishment really” (Trisha, interviewed August 26, 2019). Figure 15: Horses Awaiting their Riders, West Coast Equine Therapy Aguada, PR (Photo by Author) 177 It is possible that the high costs for both CRAAFT activity participants and the non-profit organizations offering CRAAFT activities may be contributing to the relative scarcity of these opportunities for the Puerto Rican autism community. It is also possible that another reason for the relatively few CRAAFT activities available on the island may potentially be a lack of support for these activities from the autism treatment/care provider community. In my interview with Renata, mother of a 3-year-old autistic son, she told me she has been ‘criticized’ by providers for utilizing CRAAFT activities and other alternative treatment approaches, “Sometimes these doctors criticize mothers, they say we are ‘shopping around’ for treatment…They criticize me saying ‘You think you are a doctor’. No, I do not! […] I am just not that kind of person who believes that medicine will cure you of everything. I am more holistic, I look for other alternatives that take care of and cure the body” (Renata, interviewed May 30, 2017). I asked autism treatment/care providers on the island for their opinions on CRAAFT activities. Some providers, like Pilar, were supportive of these types of activities. Pilar is one of a handful of developmental pediatricians practicing in Puerto Rico and while she noted that these types of activities can be very expensive, she told me “I am of the opinion that those such as equine therapy, surf therapy, those things are good for them…because it provides contact with nature, sensory experiences, and provides activities in which the whole family can participate. […] As long as it is not harming the child or interfering in a negative way with their developmental progress, I have no problem with my patients riding a horse” (Pilar, interviewed August 30, 2019). Other autism treatment/care providers whom I interviewed shared a negative perspective of CRAAFT activities. When I asked Olivia, a special education teacher, about her opinion on activities like surf or equine therapies, she told me “These parents are searching for magic, 178 buying this and that, to cure their child…There is no magic or cure…they won’t change. We can improve the symptoms, but they won’t change” (Olivia, interviewed May 15, 2017). In my interview with Renee, a BCBA, she told me: “I don’t believe that these activities are bad or harmful…Truly, my position is that when I hear parents saying that they take their child to surf therapy or to horses or whatever, and so they can only take their child to ABA 3 hours a week. I tell them, ‘Hey, don’t waste your money. Because I cannot make much of a difference with just 3 hours a week.’ […] if I am to teach the child how to go to the bathroom and you bring him to me twice a week for 45 minutes, I won’t be able to do it…so, all of these kinds of alternative therapies take away from those that really have a scientific base” (Renee, interviewed August 26, 2019). And so, autism treatment/care providers whom I interviewed were divided in their perspectives of CRAAFT activities. Provider concerns included the high cost of CRAAFT activities, the lack of scientific evidence supporting the efficacy of these activities, and that participation in CRAAFT activities may detract from the time available for autism families to place their children in ‘evidence-based’ therapeutic options like ABA therapy. Parental Support at CRAAFT Activities Despite the presence of significant barriers to access and availability such as the relatively high cost of some CRAAFT activities and fluctuating provider support, parents whom I interviewed reported that their children benefited greatly from participation in these types of activities. In this next section, I will discuss how the parents of autistic children themselves also benefited from CRAAFT activities. Recent literature has proposed that when we consider a therapeutic intervention or treatment modality within the context of autism, we should not only consider the autistic child’s outcome, but also the outcome for the parents and autism family (Karst and van Hecke 2012). Several studies have demonstrated that parents of autistic children, who face many social and structural challenges in securing treatment and care for their neurodiverse children, experience significantly higher levels of parenting stress when compared 179 to parents of neurotypical children (Hayes and Watson 2013, Schieve et al 2007, and Estes et al 2009). These researchers have proposed that therapeutic, social, or community-based mechanisms of intervention for reducing parental stress and workload ultimately function to benefit the entire autism family. Hayes and Watson write “Reducing parenting stress may trigger an iterative process, whereby lessening challenging behaviors will minimize future experiences of parenting stress by providing parents with the skills necessary to overcome potential future challenging behaviors" (2013:639). I found that CRAAFT activities are generally perceived by the autism community to be a significant source of community support for parents of autistic children and may potentially reduce parenting stress levels for participating autism families. In my interview with Carla, a student services coordinator, she highlighted the need for parental support in the autism community, “The activities are not only for the children, but also for the parents because there are parents who have 18-year-old children with autism who are still experiencing the stages of grief. That still have not made their peace with the diagnosis…support services for parents provide that emotional stability that they need to manage their child’s behavior” (Carla, interviewed May 9, 2017). Autism treatment/care providers offering CRAAFT activities for this community described how they have witnessed autism family support grow from these types of activities. Trisha, adaptive riding instructor with a local non-profit offering equine therapy, described autism families’ reactions to seeing their autistic children participating in a riding show: “I can’t imagine being a parent having to deal with the challenges they face day in and day out. So, for the parents to have some support, to know they are not alone, to know that their kid isn’t weird, that other kids are just like them, I think it is important. When we did a riding show for our riding club, I included the therapeutic class so they could participate in the show; so that they could feel part of the club. […] Riding a horse in Puerto Rico is a very cultural thing, so it’s neat for them to be able to do that” (Trisha, interviewed August 26, 2019). 180 I interviewed Bianca, a clinical psychologist and eco-therapy provider in Puerto Rico, on the farm where her non-profit organization is located. Nestled in a mountainous region covered in rich greenery, bumpy dirt roads make a path to the small structure housing the offices of the non- profit. I asked Bianca during our interview about what eco-therapy may offer the Puerto Rican autism family. She responded: “Eco-therapy is a model that promotes a natural environment for all of the people who attend this space… many parents say this is one of the only places where they can all go out as a family because in other places, they are judged…they feel they need to leave the space. And here, no. […] This isn’t an office space where they feel judged in the waiting room. Here, the waiting room is underneath the mango tree where they bring beach chairs and sit together. They themselves give support to each other here” (Bianca, interviewed May 27, 2017). In my interviews with parents of autistic children, several reported a similar sentiment to Bianca’s, that the benefits of CRAAFT activities extend beyond therapeutic effects for solely the participating child to include the entire autism family. Alex, father of twin autistic sons and founder of an adaptive soccer program, emphasized the support found in CRAAFT activities that reaches beyond the soccer field. As previously mentioned in this chapter, celebratory events like children’s birthday parties can be a loaded topic in autism communities. As a father himself in the autism community, Alex understood that and therefore utilized Fundación Golitos as a means to mitigate the unspoken stressors of children’s birthday parties in the world of autism. When I asked what Fundación Golitos offered autism families, he said to me, “It’s not just about the soccer…We have a ‘Happy Birthday’ day when one day a month we celebrate all of the birthdays of the children who had their birthday that month. We do it at the home of one of the kids. All of the Golitos kids go, we have a built-in community in that way” (Alex, interviewed March 5, 2018). 181 For parents whom I interviewed for this study, that ‘built-in community’ also offers rare opportunities of genuine empathy and understanding for parents of autistic children. I spoke with Mona, mother of a 10-year-old autistic son, about her experiences with the adaptive soccer program. She described how while her son benefits from the soccer program on the field, she too benefits from the sidelines. She explained, “We as moms, when they are playing, we sit down and talk and vent about all of the experiences we go through…it is like therapy for us because we have things in common. I think that a mother of a neurotypical child would not understand me in the same way mothers here do” (Mona, interviewed August 30, 2019). The theme of shared understanding and empathy was a common one in my interviews and observations at CRAAFT activities. I had the opportunity to attend an arts and crafts building session for autistic young adults offered by the Autism Alliance. Approximately 15 young autistic adults, along with their families, attended this weekly session to prepare various crafts like handmade soaps and weavings to sell at Mercado METAA, Misión Empresarismo y Trabajo para Adolescentes y Adultos con Autismo (METAA Market, Entrepreneurship and Employment Mission for Adolescents and Adults with Autism). I interviewed Janet, mother of a 14-year-old autistic daughter, while she waited for her daughter to wrap up her craft-making session. I asked her, ‘What do activities like this one offer you as a mom?’ and she responded: Well, relaxation. Because you get to know other people too. You get to know other parents that are the same as you, that also know what it is like. … it’s a way of relieving stress. […] It is a way of helping others and offering support. And it helps me too, to be able to relax and chat. It is one day a week that we can look forward to and spend time together with people who understand” (Janet, interviewed August 29, 2019). In summary, this section has described how in a world full of challenges and barriers to autism resources, services, and support, CRAAFT activities like adaptive soccer programs or arts and crafts sessions may offer benefits for not only the participating autistic child, but also for the entire autism family. Providers and parents alike noted that CRAAFT activities provided a rare 182 setting of mutual understanding and support for autism families; a place where they knew neither their child nor they themselves would be judged for their autistic child’s neurodiversity. Therefore, my findings suggest that CRAAFT activities offer an invaluable source of support for the autism community of Puerto Rico and furthermore, increased investment into the presence and proliferation of CRAAFT activities may provide significant benefits for thousands of Puerto Rican autism families to facilitate their health, happiness, and overall quality of life. ‘What Will Happen When I Am Gone?’: The forgotten autistic adult In this next section, I will explore a last, and perhaps most daunting, challenge facing the autism community of Puerto Rico—the lack of adult autism resources and services on the island. This topic was emotionally challenging as parents described their creative and determined efforts to navigate the limited Puerto Rican health and educational infrastructure to give their autistic children their best chances for leading a happy, fulfilling life to only come to find that once their children age out of the public system, they have little to no options despite their valiant efforts. Parents were left to wonder, as society seemed to have forgotten that their autistic children would one day grow to be autistic adults, ‘What will happen to my child when I am gone?’ During my interview with Rocio, mother of a 21-year-old autistic son, she spoke at length about the difficulties of having an adult autistic son with few viable options. When I asked her, ‘What is it like to be a mother of a child with autism?’, she responded: “Okay, how do I feel as a mother of a person with autism? Well, I feel like I am constantly worrying about what will happen in the future because I am going to die at some point and who is going to take care of him? What will he do? He won’t have a normal life. I do not think he will get married. I do not think he will have children. ((Rocio sighs deeply)). It is very, very hard” (Rocio, interviewed May 22, 2017). We conducted our interview over the phone to accommodate Rocio’s scheduling conflicts. I listened quietly as she took a few moments to gather her thoughts before she continued: 183 “Here all of the focus is wrong or defective in the sense that they do not think that person with autism will become an adult…All they talk about are children and young people, and what of the adults with autism? Once they become an adult, they enter into a new dimension or something where they disappear from the statistics. The idea should be…to give them an opportunity. Opportunities to be creative, to work, to live! […] They will become adults one day. And afterwards, what is there? What does society offer us as a family?” (Rocio, interviewed May 22, 2017). By this point in the interview, Rocio was very upset. It was evident that this was a distressing theme for her. I offered to take a break from the interview or to change the topic, but Rocio was adamant that this was a topic that must be brought to light. When I asked her to describe tangible barriers facing autistic adults and their families in Puerto Rico, she explained: “I’ll give you an example. Right now, my son is 21 and I need to declare him legally disabled …I need to find $3,000 for that process in court for my son…without this, he will be invisible to the system because these adults simply disappear at 21 years of age. They say ‘That is your problem Mom! Figure it out!’ […] It is a disgrace. I shed so many tears the day my son turned 21…there is nothing for him here. What are we going to do?” (Rocio, interviewed May 22, 2017). To provide context, Rocio reported that her annual household income falls into the $20,000- $50,000 range. Therefore, a $3,000 legal fee is a very significant sum and adds a distressing financial barrier to an already distressing circumstance. Unfortunately, Rocio’s story is not an uncommon one. The conspicuous absence of adult autism services is a frequent topic within the autism studies literature. Researchers have found that autistic adults are significantly disadvantaged when compared to their neurotypical peers in areas of employment, social relationships, physical and mental health, and quality of life (Howlin and Moss 2012, Chen et al 2015). One study found autistic adults to have a five times higher rate of diagnosed suicide attempts when compared to neurotypical controls (Croen et al 2015). Another study examining autism family/caregiver experiences found that many autism families find there to be a lack of support when helping their autistic children transition into adulthood, specifically noting a lack of information regarding financial planning, life-long planning, and 184 advocacy education (Graetz 2010). As their autistic children age out of the educational system, autism families frequently find that adult autism service systems are “ill-prepared and underfunded to meet their needs” (Gerhardt and Lainer 2011:37). In an editorial piece, autism researcher and clinical psychologist Patricia Howlin skips the sugarcoating when she writes “The overall picture is clear and disturbing. Prospects for young people with autism leaving school are extremely poor, not just when compared with the general population but also compared with adults with other developmental disorders (Howlin 2013:898). For parents whom I interviewed in Puerto Rico, the anxieties of their child’s upcoming transition into adulthood were literally the stuff of nightmares. In my interview with Magdalena, she described how she has already begun to worry about what her 3-year-old autistic son will do when she is no longer there to care for him: “As a mom, I think that with any child, whether they have autism or not, the parents’ priority in life is that the child is well and healthy, that they can move forward and become independent. My feeling as a mom with a child with autism, you have that worry but multiply it by 10 because you know that with your child, what if you are not there? What if you die? The logical rule of life is that the parents go first, but what will happen when I go? What will he do if he cannot care for himself? There are bad people in the world…are they going to mistreat him? If he cannot speak, how will I even know if they do? Those are the things, the nightmares really, that run through my head as I fall asleep at night” (Magdalena, interviewed August 27, 2019). When I asked Rosa, mother of a 19-year-old autistic son, what were her concerns as her son approached adulthood, she said “Being trapped”. I asked her to elaborate, and she explained “After 21 years old, there is nothing…some of these parents end up with these kids trapped in the house. It is very difficult because then these kids end up in group homes. These homes where they get even worse. In the end, this system makes them worse” (Rosa, interviewed August 29, 2019). 185 Concerns regarding autistic children’s transition into adulthood also extended to other members of the autism family such as siblings. Studies have found that siblings in autism families often become increasingly responsible for the welfare of their autistic sibling and that this may prompt considerable anxiety as they transition into a primary caregiving role (Howlin and Moss 2012, Moss et al 2019). I had the opportunity to interview Rosalia, older sister to an autistic brother. Rosalia reported being a significant caregiver to her brother, and noted that even she, as a sister, felt the anxieties revolving around the looming question, ‘what will happen when I am gone?’ In our interview, she explained “At some point, our parents will pass away. And my sister and I are older than our brother. The age difference between my brother and I is 11 years. At some point, we also are going to pass away, and he has to be independent. I don’t know if that will happen though. Each night, I pray that it will” (Rosalia, interviewed May 24, 2017). While discussing their autistic children’s transition into adulthood, parents described their desire for more opportunities for their children to lead fulfilling lives. For Genesis, a mother of a 22-year-old autistic son, the lack of opportunities is already apparent. She described to me how she has pursued options with the Department of Vocational Rehabilitation but was left disappointed. She explained: “In Puerto Rico, there is a lack of services for this population and a great need, at least for those like my son who is 22 years old and already an adult…Vocational rehabilitation for example, their appointments are very long and their process really slow…mothers like me have to search for alternatives for honestly at least some distraction for him” (Genesis, interviewed August 29, 2019). Parents like Genesis, left with little assistance from the government, are tasked with finding creative options for their children once they have aged out of the system. Some parents, like Janet, harbor hopes of creating their own communities for supporting autistic adults. Janet, mother of a 14-year-old autistic daughter, described her aspirations as “We want a center that has 186 a nurse, therapists, and where they can really work and function in adult life. So, they can become a little more independent…so when their mom and dad aren’t here anymore, they can be in a safe place. The parents will know that their children will be alright” (Janet, interviewed August 29, 2019). Janet touched upon another frequent topic when discussing transitions into adulthood for the autism community—opportunities to ‘work and function’ in adult life. Unfortunately, according to the parents and providers with whom I spoke, there exists little to no opportunities for employment in the autism community of Puerto Rico. The most significant attempts at securing employment that I observed during my fieldwork were only available to students who obtain one of the limited student spots in expensive private schools located in Metro areas of the island. While most private schools do offer some scholarships each year and some parents with whom I spoke managed to have their child’s tuition covered through Remedio Provisional, the annual tuition to attend these types of schools often surpasses the average annual household income of the typical Puerto Rican family (~$20,000) (US Census 2018). During my interview with Michelle, mother of a 21-year-old autistic son and upper-level administrator at one of the few private schools in Puerto Rico offering employment training, I asked her what her and her school’s main goals were for their autistic students transitioning into adulthood. She explained: “To be functional. And when I say functional, it’s that they can live alone, go out into the community in an independent manner, that they at least acquire the basic skills of the home, that they do not depend on another person to help them, to wash them, to visit them, to feed them… if they have been given good intervention, they can develop employment skills. They can learn to be functional in society, useful for society, and to live an independent life. Don’t you think they deserve that?” (Michelle, interviewed May 30, 2017). The autism community of Puerto Rico absolutely deserves to have their basic rights—to be heard, to be validated, to be useful to society—to be met by their community and their 187 government. Unfortunately, as I have demonstrated in this section, parents of autistic children in Puerto Rico report that their worries and fears as their autistic children transition into adulthood remain unassuaged. Autism families on the island describe feeling helpless as they watch their autistic family members approach the inevitable moment when they age out of the educational system at 21 years old and are left with little to no viable options for their future. This is a significant systemic issue within the autism resource system on the island and is in need of urgent addressing. As Gerhardt and Lainer write: “Adults with autism spectrum disorders deserve the same opportunities and options that those of us not on the spectrum, more often than not, take for granted. This would include the opportunity for a real job, a home in the community, people in their life for whom they care and who, in turn, care for them, to be free from abuse and neglect, to have access to healthcare, leisure and, if desired, a community of faith, and to be treated with dignity and respect (2011:44). Conclusion Puerto Rican autism families face numerous and substantial challenges while attempting to navigate complex, struggling health and educational infrastructure to secure the many autism resources and services that their autistic children need to facilitate their health and development from the age when they are first diagnosed with autism and into their lives as autistic adults. In this chapter, I have described how these challenges include issues of autism resource access and availability, as parents and providers alike encounter the barriers of high cost, lacking insurance coverage, clustering of resources in Metro areas, and a scarcity of specialized services like physician specialist consults and ABA therapies. I noted how many Puerto Rican autism families weigh the pros and cons of leaving their home country to pursue these needed autism resources and services in the United States. I then discussed how upon encountering these many obstacles standing between Puerto Rican autism families and the services they require, parents of autistic children on the island 188 must often resort to legal measures such as Remedio Provisional; contributing to parents’ sentiments of needing to ‘fight for their child’s rights’ against the Departments of Education and Health to give their autistic children their best chances in a world poorly equipped to meet their neurodiverse physical, mental, and social needs. After this, I turned my attention towards the significant challenge of societal stigma encountered by Puerto Rican autism families. They described the difficulty of feeling comfortable in public spaces like grocery stores and children’s birthday parties, and how this has resulted in many feeling marginalized and alone in society. Next, I described the role Community-based Recreational/Alternative Autism Family Therapeutic (CRAAFT) activities play in the lives of Puerto Rican autism families. I explained how these types of activities were not only perceived by parents to be beneficial for the participating autistic children, but also beneficial for the entire autism family as they offer protected social spaces of understanding, empathy, and mutual support for the autism community. Lastly, I discussed how parents of autistic children and autism treatment/care providers were saddened, disappointed, and frustrated by the lack of resources and services for autistic adults on the island. I noted how, for many autism families, the looming inevitability of their autistic child’s 21st birthday—and the day they age out of the public education system—is a source of tremendous anxiety and stress as they are left to wonder what will come next and ‘what will happen when I am gone?’. I end this chapter by emphasizing that while many of the various challenges and barriers to care described here, such as the lack of adult autism services, are commonly found throughout global autism communities, it is critical that we also acknowledge that there is no ‘standard autism family experience’. As I have stressed throughout this dissertation, the autism family experience, including challenges in autism resource navigation, is unavoidably shaped by the 189 local context in which this disorder is lived. I have described how the political realities of a government in turmoil have left the Puerto Rican autism community without a state authority to turn to for help. I noted how economic factors, like the national debt crisis, have created a middle-class of Puerto Rican autism families who neither qualify for the government medical plan nor can afford the high cost of private health insurance. The devastation of Hurricane Maria compounded these political and economic factors, as this natural disaster hurtled these autism families from a stressful situation into a desperate one—prompting thousands to leave their home country and family support system for the chance at opportunities for their autistic children in the United States. And lastly, I emphasized how the specific sociocultural norms and values of Puerto Rican culture, like the prioritization of community inclusion and the highly valued role of the family, make the blow of societal stigma and exclusion all the more painful for Boricua autism families. And so, when we consider how to address and provide potential solutions for these many challenges described in this chapter facing Puerto Rican autism families, we must place equal emphasis on both of these adjectives describing these families. They are not simply autism families living on a Caribbean island, they are Puerto Rican autism families encompassing all of the politico-economic, historical, and sociocultural values and realities that come with being Boricua. 190 CHAPTER 9: Conclusion: Witnessing the Puerto Rican Autism Family 191 In biomedical terms, Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder of unknown etiology that impacts several core areas of a child’s development including but not limited to the socio-communicative, behavioral, and sensory areas (CDC 2020). ASD is also frequently accompanied by medical co-morbidities, such as epilepsy, sleep disorders, and hypersensitivities (Lai et al 2014). However, as the stories of autism families throughout this dissertation have illustrated, a strictly biomedical definition of ASD does not capture the multifaceted and complex experience of autism as lived social phenomenon which impacts the entire autism family. As discussed in Chapter 2, contemporary models of autism like the Neurodiversity Model have expanded how we as a society conceptualize autism beyond the biomedical. In the introduction of this dissertation, I explained how a purely biomedical view of autism hyper-focuses on autism as a ‘puzzling’ disorder in need of proper placement and position. Throughout this dissertation, I suggest adjustments to this view offering an alternate perspective of the autistic experience; inviting readers to immerse themselves in an ethnography of autism to share in the Puerto Rican autism family experience. This dissertation’s title ‘Forgotten Families of the Sea and the Sun’, harkens back to the island’s national anthem that evokes ‘Borinquen, the daughter of the sea and the sun’. I chose to describe Puerto Rican autism families as ‘forgotten’ for several reasons, one of which being that the Puerto Rican autism community, and thousands of communities like them around the world, are conspicuously absent from the literature. There is a significant need for research like this study within the existing clinical autism, anthropological, and disability studies literature. Currently, the collective literature is dominated by the autism experiences of White North American and European high socio-economic, resource-rich populations (Rice and Lee 2017, Durkin et al 2015, Mandell et al 2009). In the last decade, autism researchers have noticed this 192 skewed representation and have called for increased attention to be paid to diverse autism populations, especially those in minority or underrepresented autism populations living in low- income, resource-deficit areas (Durkin et al 2015, de Vries 2016, Elsabbagh et al 2012). Researchers argue that this diversification of the literature is critical in order to develop culturally informed and effective screening, diagnostic, therapeutic/interventional, and family support protocols that are applicable and available not only to those that have the most access to these autism resources and support services, but also to those who may have the least (de Vries 2016, Rice and Lee 2017). This dissertation contributes towards addressing this gap in the literature by focusing on autism family experiences within the relatively low-income, resource- deficit context of Puerto Rico. Puerto Rico proved to be an ideal setting to examine how local political-economic, sociocultural, historical, and structural factors that may differ significantly from those represented in the current literature impact the lived experience of the autism family. In her ethnography ‘The Drug Company Next Door’, anthropologist Alexa Dietrich writes this of Puerto Rico as a topic of ethnographic study: "As a place that is arguably politically and economically midway between developed and developing, simultaneously colonial and post- colonial, what happens in Puerto Rico does not 'stay in Puerto Rico'. Rather, it has the potential to predict what might happen as other parts of the world become more heavily industrialized but remain economically dependent on the larger markets of countries like United States" (2013:6). As discussed in Chapter 3, autism families in Puerto Rico are not only tasked with the inherent challenges that come with navigating a neurotypical society as a neurodiverse family, but also with the additional challenges of navigating a struggling health care system and a medical and 193 educational infrastructure that unfortunately places numerous barriers that block access to the autism resources and services that their autistic children need. During 2017 to 2019, the years in which I conducted the fieldwork for this study, Puerto Rican autism families faced seemingly endless obstacles to care for their children. These included a national economic crisis resulting in Puerto Rico’s declared bankruptcy (Caraballo- Cueto and Lara 2017), a convoluted, inadequate system of managed care (Mulligan 2014, Perreira et al 2017), and a dire health care professional shortage (Perreira et al 2017, Haddad 2019). These problems are not new on the island, but instead are the culmination of historical disenfranchisement and a centuries’ long colonial legacy that casts the Puerto Rican people to the margins. However, these longstanding issues were brought to a breaking point in wake of the devastation of 2017’s Hurricane Maria—the worst natural disaster to hit the island in a century. I had the unique opportunity to conduct my fieldwork directly prior to the hurricane (May 2017) and directly after (March 2018, August 2019). Through my interviews and observations with Puerto Rican autism families, I was able to capture their stories which highlighted how challenges that were already daunting became dishearteningly insurmountable in the chaos of uncertainty and infrastructural collapse. Through this study, I was able to demonstrate how these far from ideal conditions significantly impact the autism family experience—significantly enough, I argue, to render the dominant autism experience as represented in the literature in which families have access to the best and brightest of autism management and therapeutic intervention virtually irrelevant to autism communities like that of Puerto Rico, where these autism resources and services are unavailable and unfeasible within the contemporary struggling health and educational infrastructure. Furthermore, I argue that by failing to diversify the autism studies literature to 194 represent a broad spectrum of sociocultural experiences of autism as both biomedical disorder and lived social phenomenon, autism communities have been further marginalized with their stories and experiences at risk of being deemed irrelevant and ultimately silenced. Autism in Context: Voices from Puerto Rico This dissertation has served as a window to the Puerto Rican autism family experience as seen through an anthropological lens. Throughout my fieldwork, I had the privilege and honor of collecting the perspectives, experiences, stories, and voices of the Puerto Rican autism community including autism families and the providers who strive to meet the health and educational needs of their autistic patients. I have sought to weave together these stories and experiences within a theoretical framework that illuminates the various structural and sociocultural factors that combine to shape the autism family experience in Puerto Rico. In this study, I utilized ethnographic methodologies, as described in Chapter 4, to capture and amplify the voices of Puerto Rican autism families and an anthropological approach to contextualize these voices within a larger Critical Medical Anthropological (CMA) theoretical framework. In each of the data chapters, I considered how various aspects of the autism family experience are inherently informed by the local context in which it is lived. These aspects included autism conceptualization (Chapter 5), autism causation theory and its impact on parental vaccination decision-making (Chapter 6), language practices and ideologies (Chapter 7), and autism family resource navigation (Chapter 8). In this concluding chapter, I wish to take a step back from these specific elements of the Puerto Rican autistic experience to briefly survey overarching themes that connect each of these elements. By doing so, I elucidate how the power of each of these factors, both within and 195 beyond biomedical understandings of autism, have functioned to shape the locally lived Puerto Rican autism family experience. I begin by exploring the subtle yet significant impact of Puerto Rico’s colonial legacy on the lives of the Puerto Rican autism community. The Enduring Colonial Legacy of Puerto Rico If Puerto Rico’s historical and contemporary exploitation at the hands of the colonizing global powers of first Spain, and then the United States was a smoldering fire in the hearts of the Puerto Rican people prior to Hurricane Maria, then this sentiment erupted into an outright blaze following the disaster’s aftermath. Researchers have documented how Puerto Ricans were treated inequitably in the response from federal relief agencies like FEMA (Haddad 2019, Willison et al 2019) and anthropologists have argued that this inadequate treatment was a blatant manifestation of the colonial legacy that persists to this day on the island (Ficek 2018, Rodriguez-Soto 2017), as anthropologist Rosa E. Ficek writes “…the dehumanization of Puerto Ricans during disaster is a foundational component of the modern colonial state” (2018:103). Throughout this dissertation research, the impact of Puerto Rico’s enduring colonial legacy repeatedly surfaced in my conversations with and observations of autism families, who arguably are one of the most vulnerable populations on the island. Here too, the reader may see how the moniker of ‘Forgotten Families’ may apply to this community, as those who would argue that we as a global society are in a ‘post-colonial’ age seem to have forgotten that Puerto Rico continues to exist in the ‘limbo’ between colony and nation with their rights as citizens diminished. The historical forces of colonial legacy were not simply theoretical or philosophical in nature, but rather resulted in the very real disempowerment of the autism families with whom I worked. In chapter 6, I discussed how notions of autism causation relayed to me by autism families and autism treatment/care providers pointed to a long history of environmental 196 contamination and exploitation on the island as a potential ‘trigger’ for a child’s atypical development. Parents identified contamination both at the hands of federal government and major pharmaceutical industries as possible contributors to the rapidly rising rates of autism in Puerto Rico. I examined the historical legacies of English language ideology on the island— asking if perhaps this perceived English language preference by Puerto Rican autistic children and adults may carry with it broader implications as English speakers are linguistically associated with the language of colonizing empire (see Chapter 7). I also discussed how autism families and providers navigate a health care system that was historically constructed as an example of Puerto Rico’s status as ‘social laboratory’ (Lapp 1995)—the regionalized health care system an experiment from wealthy American institutes in their attempt to shape the Puerto Rican people into a model of ‘Caribbean civilization’ (Arbona and Ramirez de Arrellano 1978). The experiences of struggle to access autism care from the stories of autism families speak to how this regionalized system, along with the more recent shortcomings of an US-imported managed care system, have failed to meet the needs of a population who are most desperate for medical and educational resources; resources that may make all the difference in the health and quality of life for their autistic children (see Chapter 8). And so, this study in many ways foregrounds how Puerto Rico’s historical background of colonial legacy shapes in tangible ways the continued hardships of the Puerto Rican autism community. A Nation in Crisis This study has also demonstrated how historical colonial legacy has set the stage for contemporary political and economic forces to shape the realities of the lived autistic experience in Puerto Rico, most often to the detriment of the autism families on the island. In this sense, 197 Puerto Rican autism families are unseen and at risk of being ‘forgotten’ by the very State authorities that are responsible for the provision of care for vulnerable populations. In recent years, Puerto Rico has experienced extreme turmoil in the wake of political and economic flashpoints like the establishment of the Junta Fiscal following the passing of the PROMESA act (White 2016, Walsh 2017) and significant financial cutbacks to medical and educational sectors (Perreira et al 2017). The autism community on the island, already tasked with navigating a convoluted system of care, watched as the few resources and services that were available diminished further. Autism families meet significant structural politico-economic challenges like lack of funding for Special Education programs and endless bureaucratic hoops to jump through that all too often end up in ‘last resort’ legal measures (see Chapter 8). The economic reality of an increasingly widening socioeconomic divide manifests as well in the language practices and beliefs held by parents and providers surrounding those practices. I described how autistic children in Puerto Rico were frequently perceived by their families and providers to prefer English language, and how English language is associated with increased socioeconomic status and opportunity. However, this English language preference may present potentially significant barriers for autistic children, especially those from a lower socioeconomic class, as English language autism services are extremely limited on the island (see Chapter 7). The tension-filled relationship between autism families and the State manifested in various ways throughout this study. I explored how parents of autistic children felt they must ‘fight for their child’s rights’ against the State to access resources and services their children required, especially those whose children approached the age of 21 to transition into adulthood with few viable options awaiting them (see Chapter 8). This ‘fight’ also appeared in my discussion regarding parental vaccination decision-making, where parents described their 198 protests against mandatory vaccination laws as they voiced concerns that their children’s ‘unique dispositions’ and worries of vaccinations ‘triggering’ autism in their children were being ignored by the State (see Chapter 6). In my discussion of CRAAFT activities, I explored how parents of autistic children supported grassroots, community-based efforts to provide the resources, services, and much-needed support for the Puerto Rican autism community that the State has failed to provide (see Chapter 8). Through these various examples, we are able to see how the political and economic realities of life in Puerto Rico have ultimately worked in locally unique ways to exacerbate the challenges facing the Boricua autism community in their attempts to provide for their children and patients in a nation that has more often than not failed to adequately provide for their autistic citizens. Sociocultural Implications of Being ‘Boricua y Autista’ A holistic understanding of autism considers the local historical and politico-economic structural forces that shape autism family experiences. Equally important in this consideration of autistic experiences is the local sociocultural context in which this neurodevelopmental disorder is lived. As autism researcher Olga Solomon writes “With its Janus-like quality of being relevant to both the clinical and the social, autism creates an analytic bridge between clinical practice and social practice” (2010:248). Throughout this dissertation, I have noted the many overarching sociocultural implications of the combined identities of being Boricua y Autista [Puerto Rican and Autistic]. In chapter 5, I discuss the cultural belief of fatalismo [fatalism], or the idea that one’s fate cannot be changed (Lopez et al 2018). Researchers have suggested that these fatalistic beliefs may impede the use of autism screening and services in Latino populations (Mandell and Novak 2005, Blanche et al 2015); however, my findings suggest that the sociocultural lived reality of autism families fosters a practice of fatalismo that does the exact opposite. I described 199 how some parents felt empowered by their belief that they were fated or chosen by a Higher Power to raise a neurodiverse child in this neurotypical world. It would seem then that the Boricua incarnation of fatalismo within the setting of autism may be a boon to this community rather than an impediment to care. Another theme that arose consistently throughout this dissertation concerned questions of the identity construction of autistic individuals and the autism family as a unit. The term ‘identity’ may be defined in many ways, a straightforward definition being “the way a person understands and views themselves and is often viewed by others” (Holland 1998). Puerto Rican autistic individuals and families find themselves engaged in an effort to balance their ‘Boricua’ identity with their ‘autistic’ identity, two identities that in several ways may act to contradict one another. I described how English language preference may carry marginalizing implications of the autistic individual as a both a neurological and linguistic outsider in society and even within their own family unit (see Chapter 7). When difficulties and differences in social interaction already place autistic children at risk of social isolation, how then does the local cultural implications of speaking English in a Spanish-dominant society compound that risk? I also explored this theme of identity and exclusion in my discussion of social stigma facing this community (see Chapter 8). Autism families find themselves feeling unwelcome and isolated in public spaces, excluded from core cultural spaces that foster and reinforce their Boricua identity. This study therefore sheds light on the importance of considering how the local sociocultural context in which this neurodiverse experience is lived—a sociocultural context that may differ tremendously from the rather homogenous sociocultural experiences represented currently in the literature—may significantly shape the lives of autism families not only in Puerto Rico but also it would seem in diverse contexts around the world. 200 Critical Medical Anthropology and Critical Autism Studies: A symbiotic partnership So far in this conclusion, I have described how I employed a CMA approach in my examination of autism as both biomedical disorder and lived social phenomenon within the context of the Puerto Rican autism community. This approach worked to lay bare the ways in which forces and factors beyond the simply biological or psychological underpinnings of autism worked to shape how the Puerto Rican autistic experience is lived. In light of this, I would like to suggest here that a mutually beneficial, yet still underexplored potential interdisciplinary partnership exists between the disciplines of Critical Medical Anthropology (CMA) and Critical Autism Studies. Critical Autism Studies (CAS) is a very new field and was first coined as a term during a 2010 workshop in Canada held by autism researchers Michael Orsini and Joyce Davidson (O’Dell et al 2016). CAS as an approach aims to “…trouble the commonsense understanding of (dis)ability through interrogation of the construction of autism as a spectrum of difference configured as a social and cognitive impairment, which may sit uneasily within a (dis)ability framework” (O’Dell et al 2016:168). Orsini and Davidson outlined the three foundational elements of a CAS approach as: 1) careful attention to the ways in which power relations shape the field of autism, 2) concern paid to the new, enabling narratives of autism that challenge the predominant (deficit-focused and degrading) constructions that influence public opinion, policy, and popular culture, and 3) commitment to develop new analytical frameworks using inclusive and nonreductive methodological and theoretical approaches to study the nature and culture of autism. The interdisciplinary research required (particularly in the social sciences and humanities) demands sensitivity to the kaleidoscopic complexity of this highly individualized, relational disorder (Orsini and Davidson 2013:12). This outline of the CAS approach has been met with some criticism within various disciplines, in particular noting that this version of CAS did not adequately “…take into account the emancipatory nature of the discipline” (Woods et al 2018). Alternatively, autism researcher Mitzi Waltz offered an interpretation of CAS as “…the ‘critical’ comes from investigating power 201 dynamics that operate in Discourses around autism, questioning deficit-based definitions of autism, and being willing to consider the ways in which biology and culture intersect to produce ‘disability’” (Waltz 2014:1337). Thus, it seems then that CMA and CAS approaches have the potential to dovetail seamlessly, both approaches working to critically question assumptions surrounding and buttressing our notions of biology, culture, health, illness, and, albeit quite the statement, what it means to be Human in our contemporary biomedicalized, geneticized world. Autism researcher and father of an autistic daughter R.R. Grinker highlights this when he writes that an anthropologically informed approach has “the ability to unmask the cultural foundations of scientific representations and to comprehend both the social life of autism, as a construct, and autistic sociality” (2015:345). Additionally, CMA and CAS approaches have the potential to work together in a symbiotic fashion to build towards a shared goal of bettering the quality of life for autistic communities around the world through their commitment to putting their research to practice. This has long been a core feature of the CMA approach; Nancy Scheper-Hughes passionately argued this point when she expressed her frustration with the expectation of ‘the anthropologist as spectator’ rather than ‘the anthropologist as witness’, arguing that “anthropological writing can be a site of resistance” (Scheper-Hughes 1995:420). CAS takes a similar position on the subject, as Orsini and Davidson write “The critical autism studies approach we advance here imagines the ‘academic’ study of autism as a site of action and resistance, to be read in tandem with autistic and non-autistic forms of expression in literature, film, and other media” (2013:15). It was my aim throughout conducting all stages of this study—from fieldwork to data analysis to the write up—for the results of this research to carry real-life implications for the 202 Puerto Rican autism community. In writing this ethnography of autism, I attempt, the best way I know how as a physician-anthropologist in training, to shift the voices and stories of this community from the margins into center focus—and to reveal in the harsh light of a critical gaze the detrimental structural forces that threaten to remain hidden in the shadows. In this manner, I sought to apply Merrill Singer’s philosophy regarding a CMA approach as he writes, “If, as Socrates suggested, a life unexamined is not worth living, then it can be said that research that is not at all relevant to furthering life in a time of crisis may not be worth doing” (Singer 1994:945). I argue that this dissertation has made clear that autism communities today, especially those living in marginalized/minority relatively low-income, resource-deficit areas like Puerto Rico, are living in a time of crisis. These autism families, families like soccer coach Alex, Diana, and their twin autistic sons or social butterfly Quinta and her bubbly, ecosystem-loving autistic daughter Carolyn, exist at the margins of a neurotypical society that is too overwhelmed by the chaos of crumbling infrastructure and political turmoil to notice their struggle, praise their accomplishments, or lend a much-needed hand in these challenging times. It is my hope that this study, in some small way, witnesses and therefore honors the voices and stories of these Puerto Rican autism families and the thousands like them on the island, and furthermore spurs those in power into action to work to meet the needs of this vibrant, creative, and resilient community that lives cast in shadow in the land of the sea and the sun. Witnessing the Autism Family: The need for public policy change It seems only fitting to conclude this dissertation with a discussion of parental responses to the question that concluded each of my interviews with parents of autistic children in Puerto Rico. At the end of my interviews, I asked each parent if they had any recommendations for 203 improving the autism resource system on the island. Their recommendations covered a broad range of themes, several of which have already been discussed in this dissertation such as the need to combat stigma against autism on the island, the need for increased transparency and cooperation between autism families and government agencies, and the need for more opportunities for autistic adults in Puerto Rico. In this last section, however, I will discuss a more macro-level recommendation made by several parents whom I interviewed—the need for public policy change. The autism community, both within and beyond Puerto Rico, is frequently both underrepresented and misrepresented within the arena of public policy. The relatively recent rise in autism awareness, advocacy, and sheer number of individuals diagnosed with autism have made it so this community can no longer be easily left out of public policy conversations. Orsini writes: "Autism is a useful case study because it highlights how neurological difference cannot be 'managed' in the same way as we treat other forms of diversity. Autism also forces us to confront the complex ways in which disability (and disabled people) have been marginalized from policy processes generally and from public policy discussions related to diversity and disability specifically" (Orsini 2012:806). Researchers have proposed that this lack of adequate public policy for the autism community, in particular autistic adults, may stem from a misconception of autism as a ‘childhood problem’, “Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children…This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults” (Robison 2019:370). Parents whom I interviewed described an urgent need for a public policy overhaul in Puerto Rico to challenge the government’s outdated perceptions, expectations, and assumptions regarding the autism community. In my interview with Mariela, mother of a 16-year-old autistic 204 son, I asked her what her recommendations would be to improve the autism resource system in Puerto Rico. She responded, “Autistic people have to be a priority for the government. Remember that the government views children like something to invest money into. They don’t want to invest in something that won’t produce. And here, they view autistic kids like an investment that won’t produce. That they are not worth the money because they will never do anything with their lives; so, it has to come from the top. It has to be a public policy change” (Mariela, interviewed May 30, 2017). Mariela’s recommendation that Puerto Rican public policy shift their understandings of their roles and responsibilities regarding the local autism community speaks to what autism researcher Dana Lee Baker describes as a process of ‘changing paradigms’ regarding disability and difference. She writes “Changing paradigms can take a long time to become manifest in public policy...under the modern understanding of disability, if a society fails to uphold its responsibilities in this arena, then society itself experiences disability because one of its major life functions (the protection of its citizens) becomes compromised” (Baker 2006:192). In my interview with Magdalena, mother of a 3-year-old autistic son, she prefaced her recommendations with a disclaimer, “Look, this is probably just a fantasy”. I nodded my head and she continued: “I think that health care should be free. It should not be something where you have to kill yourself working to be able to pay for a medical insurance plan and afterwards, you can’t even pay the deductible! I believe that services for autistic children should be there quickly and free of charge. It shouldn’t matter if the mom of the child is working or not working. The family’s income should not matter…Some kind of public policy should exist so the government responds to these children, to help the children of this country” (Magdalena, interviewed August 27, 2019). Other parents, like Alex, viewed the challenges to positive public policy change for the autism community to be an issue of incentive. When I asked for his recommendations for improving the 205 Puerto Rican autism resource system, one of his recommendations was as follows: “The government has to adopt public policies that are inclusive of people with autism. There should be an economic mechanism where private enterprises are given tax breaks if they employ people from this population. There has to be public policy change, the government has to come out and say, ‘This is what we are going to do’. And that hasn’t happened yet” (Alex, interviewed May 29, 2017). Parents like Mariela, Magdalena, and Alex voiced a deep desire for the government and the public policies they create to change how they view the autism community. Dolores, mother of an 18-year-old autistic daughter and a vocal leader with the parent-run Autism Alliance organization, described one of the primary goals of the non-profit as mobilizing to affect public policy and social change. I asked her about the organization’s work, and she explained that “The autism community grows more each day, but the services have not significantly improved. And so, we are in a constant struggle to make sure we achieve social justice…in the area of public policy, believe me, there is still so much more work to do” (Dolores, interviewed March 8, 2018). During the time this fieldwork was conducted, as discussed in Chapter 3, the Puerto Rican government experienced a tremendous amount of turmoil and struggle. In these two years alone, the island’s population weathered national economic debt crisis, multiple natural disasters including Hurricane Irma, Hurricane Maria, and several earthquakes, and outrageous political scandals of corruption and strife. In 2019, the people of Puerto Rico rallied together to demand systemic change in a historic march where hundreds of thousands of Puerto Ricans took to the streets in protest. 206 Figure 16: National Protest, July 22, 2019 San Juan, PR (Murphy et al 2019) While this was a momentous occasion for the people of Puerto Rico, missing from the protests were some of the most marginalized and disenfranchised on the island. Puerto Rican protests were recognized worldwide for their creative, Boricua method of protest including dance, music, banging of pots and pans, and their practice of ‘call and response’ while marching. Loud noise and commotion assured their protests would be heard, however, that same noise and commotion would also assure that the sensory-sensitive autism community would stay away. This is not to say that these protests would not ultimately serve the autism community, as these national protests demanded changes for all Puerto Ricans. However, when the march was over, the streets swept, and protesters returned home, the autism community—which already was protesting for years for increased support and visibility—watched as their needs and demands for change were again pushed to the back burner. The Puerto Rican autism community is one of many such autism communities that have been, consciously or not, relegated to the proverbial back burner by their local neurotypical societies, their overarching governments, and the contemporary research literature. By prioritizing a diversity of representations and experiences of global autism communities, especially those living in low-income, resource-deficit contexts, we 207 work towards bringing these communities in from the margins so that their unique, locally informed experiences may contribute towards shaping our understanding of global autistic experiences and therefore, facilitating the development of accessible, appropriate autism screening, diagnostic, therapeutic/interventional, and family support protocols. In conducting this study, an ethnography of autism in Puerto Rico, I have sought to witness the perspectives, experiences, and stories of the Boricua autism community. It is my hope that this witnessing may also enlighten understandings of autism communities living in similar structural and social contexts beyond the Enchanted Island. Despite their status as a marginalized community within a marginalized country, the voices of the parents of the Puerto Rican autism community ring clear and strong—these parents call for critical public policy change that will address the many as of yet unmet needs of Puerto Rican autism families. This call for change has never had greater urgency and yet, has never been at greater risk of being ignored and forgotten. 208 APPENDICES 209 Italics: Spanish language [ ] : English translation APPENDIX A: TRANSCRIPTION KEY (( )) : Gestures, non-speech vocalizations, environmental/contextual details — : Abrupt cut-off or interruption __ : Underline emphasis by speaker … : Brief speech (< 1 line) removed by transcriber for relevance or to protect anonymity of participants […] : Speech (> 1 line) removed by transcriber for relevance or to protect anonymity of participants 210 APPENDIX B: INTERVIEW TEMPLATES ASD Parent Interview Form Interview # and initials: ________ Interviewer: MC Date: __________ Introduction: Hello. Thanks for taking the time to be here ________ (Insert Name). This interview is part of a preliminary research study exploring how parents of ASD children think about autism and how they advocate for their child’s access to medical, educational, and community resources in Puerto Rico. This study is being conducted as part of my doctoral dissertation research under the supervision of Dr. Linda Hunt. I am interested in exploring how autism is conceptualized by the members of the ASD community, specifically parents of children with autism. I am also interested in how ASD parents navigate and gain access to resources for ASD individuals. I want to emphasize that there are no right or wrong answers to these questions. What I really want to know is what you think and everything you tell me will remain completely anonymous. Your answers will not be discussed with other ASD community members or treatment providers of any kind. Additionally, please know that you can always elect not to answer any questions if you are uncomfortable. You may choose to stop this interview at any time if you no longer care to participate. Any questions before we get going? General Parenting Experience: 1) I would like to start off by getting to know a little about you. What is a typical day for you like? 2) What is it like to be a parent of a child with autism? A. Autism Experience: 1) How was ____ first diagnosed with ASD? [PROBE] Who made the diagnosis and what was that experience like? Did you agree with this diagnosis? How many different diagnoses did he/she have before arriving at ASD? What did you know about autism prior to diagnosis? B. Autism Conceptualization: 211 Thank you for sharing. Next, I would like to know a little more about how you think about autism. 1) In your own words, what is Autism? C. Autism Causation and Cure Discourse: 1) How might someone ‘get’ Autism? [PROBE] When did you first here about that cause? If multiple causes, do you think they all contribute? Do some contribute more than others? 2) What are some symptoms of Autism? [PROBE]: Which do you think are hardest for ______ (name of child)? Which are hardest for you? 3) Do you think there will be a cure for autism? [PROBE}  If not, is this because you think autism is not something to be cured? Why do you think people want to cure it?  If yes, what kind of cure? Medical? Alternative? Behavioral? 4) Do you think there is any way to prevent autism? D. Resource Access: Okay, so now I want to switch it up a bit and ask about the kinds of resources you use as a parent to an ASD individual and how you gained that access. Resources can include a variety of things such as, but not limited to, educational services, medical care, behavioral therapy, and community support. Do you have any questions before I continue? 1) What kind of resources are available in Puerto Rico for ASD individuals and their families? 2) What challenges have you faced in accessing these resources? 212 [PROBE]: Which were the most difficult to access? Which were most important for you to gain access to? 3) Of the resources currently being used by yourself and ______ (name of child), which is the most important to you and why? 4) Can anything be different that might help you access these resources better? 5) Background Information: We’re almost there! I would just like to finish up by asking a few questions about your personal background. 1) Circle: [Male] [Female] 2) How old are you? ______ 3) Where were you born? ___________ 4) Marital Status? _________ 5) How many children do you have? ______ How many have been diagnosed with ASD? ______ 6) What language do you speak at home? _______ Does _____ (name of child) use this language at home? If not, which does he/she use? )_________ 7) What is your occupation? __________ 8) What is your spouse’s occupation? _____________ 9) Can you tell me approximately, what is your family’s annual household income? Less than $10,000 $11,000-$20,000 $21,000-$50,000` $51,000-$80,000 $81,000-$100,000 More than $100,000 10) Are you financially responsible for anyone outside of the home? Closing That’s all the questions I have. Thanks for your time! Are there any other questions you have or anything you would like to add before we wrap up? 213 Padre ASD: Formulario de Entrevista Entrevista # e iniciales: ________ Entrevistadora: MC Fecha: __________ Introducción: Hola y gracias por estar aquí. Esta entrevista es parte de un estudio explorando como padres de niños con autismo piensan del autismo. Además, examinamos como los padres de los niños con autismo abogan por sus hijos para lograr acceso a recursos incluyendo recursos médicos, educacionales, y de la comunidad en Puerto Rico. Este estudio forma parte de mi disertación doctoral dirigido bajo la supervisión de Dra. Linda Hunt. Quiero explorar como miembros de la comunidad del autismo conceptualizan el autismo, específicamente los padres de niños con autismo. También quiero examinar como estos padres logran acceso a los recursos por los individuos con ASD. Quiero enfatizar que no hay ni respuestas correctas ni respuestas incorrectas. Solamente quiero saber qué piensas y todo lo que me dices va quedar completamente en anónimo. Tus respuestas no van a ser discutidos con otros miembros de la comunidad ni con ningún tipo de proveedores de tratamiento. Además, sabes que siempre puedes elegirte no contestar cualquier pregunta que te haga sentir incómodo. Puedes parar esta entrevista en cualquier punto si no quieres seguir participando. ¿Tienes alguna pregunta antes de empezar? Experiencia con La Crianza: 1) Al comienzo, quiero saber un poquito más de ti. ¿Cómo es un día típico para ti? 2) ¿Cómo es ser padre de un niño con autismo? Experiencia con el Autismo: 2) ¿Cómo diagnosticaron ____ con el autismo? [PROBE] ¿Quien fue que lo diagnosticó y como fue esa experiencia? ¿Estuvistes de acuerdo con el diagnostico? ¿Qué sabias sobre el autismo antes que él/ella fue diagnosticado? Conceptualización del Autismo: Gracias por compartir. Siguiente, quiero saber un poco más de como piensas del autismo. 214 2) ¿En tus propias palabras, que es el autismo? Discurso de Causalidad y Curación del Autismo 5) ¿Cómo es que alguien llega tener autismo? 6) ¿Cuáles son algunos síntomas del autismo? [PROBE]: ¿Cuáles son los más difíciles para el niño y para usted? 7) ¿Crees que el autismo puede ser curado? 8) ¿Crees que el autismo se puede prevenir? Acceso a los Recursos: Ahora quiero cambiar el tema un poco y empezar con preguntas sobre los tipos de recursos y servicios que tu usa como un padre de un niño con autismo. También quiero saber cómo es que lograste acceso a estos recursos. Un recurso o servicio puede incluir muchas cosas como servicios educacionales, cuido médico, terapia de comportamiento, y apoyo en la comunidad. ¿Hay alguna pregunta antes que comenzar? 6) ¿Cuáles son los recursos y servicios disponibles en Puerto Rico para individuos con autismo y sus familias? 7) ¿Cuáles son las dificultades en el acceso de estos recursos? 8) ¿Cuáles son los recursos y servicios más importantes para ti y tu niño? 9) ¿Tienes alguna recomendación para mejorar el acceso a los servicios? Antecedentes: ¡Casi llegamos! Quiero terminar con unas preguntas sobre ti. 1) [Masculino] [Femenino] 2) ¿Edad? ______ 215 3) ¿Lugar de nacimiento? ___________ 4) ¿Estado civil? _________ 5) ¿Cuántos hijos tienes? ______ ¿Cuantos han sido diagnosticado con el autismo?______ 6) ¿Qué idioma usan en la casa? _______ ¿Qué idioma usa tu hijo/a? ________ 7) ¿Ocupación? __________ 8) ¿Ocupación de la esposo/a? _____________ 9) ¿Ingreso familiar anual? Menos de $10,000 $11,000-$20,000 $21,000-$50,000` $51,000-$80,000 $81,000-$100,000 Más de $100,000 10) ¿Tienes la responsabilidad económica para personas fuera de la casa? Termino: Esas son todas mis preguntas. ¡Gracias por compartir tu tiempo! ¿Hay alguna pregunta más o algo que quieres decir antes de concluir? 216 ASD Treatment/Care Provider Interview Form Interview # and initials: ________ Interviewer: MC Date: __________ Introduction: Hello. Thanks for taking the time to be here. This interview is part of a preliminary research study exploring how parents of ASD children and members of the ASD community think about both autism and access to medical, educational, and community ASD resources in Puerto Rico. This study is being conducted as part of my doctoral dissertation research under the supervision of Dr. Linda Hunt. I want to emphasize that there are no right or wrong answers to these questions. What I really want to know is what you think and everything you tell me will remain completely anonymous. Your answers will not be discussed with other ASD community members or treatment providers of any kind. Additionally, please know that you can always elect not to answer any questions if you are uncomfortable. You may choose to stop this interview at any time if you no longer care to participate. Any questions before we get going? General: 1) I would like to start off by getting to know a little about you. What is a typical day for you like? 2) What is it like to be part of the ASD community? A. Autism Conceptualization: Thank you for sharing. Next, I would like to know a little more about how you think about autism. 1) In your own words, what is Autism? B. Autism Causation and Cure Discourse: 1) How might someone ‘get’ Autism? [PROBE] When did you first here about that cause? If multiple causes, do you think they all contribute? Do some contribute more than others? 2) What are some symptoms of Autism? 217 [PROBE]: Which do you think are hardest for ______ (name of child)? Which are hardest for you? 3) Do you think there will be a cure for autism? [PROBE}  If not, is this because you think autism is not something to be cured? Why do you think people want to cure it?  If yes, what kind of cure? Medical? Alternative? Behavioral? 4) Do you think there is any way to prevent autism? C. Resource Access: Okay, so now I want to switch it up a bit and ask about the kinds of resources available on the island for ASD children and adults. Resources can include a variety of things such as, but not limited to, educational services, medical care, behavioral therapy, and community support. Do you have any questions before I continue? 1) What kind of resources are available in Puerto Rico for ASD individuals and their families? 2) What challenges are present in accessing these resources? [PROBE]: Which were the most difficult to access? 3) Can anything be different to make access to these resources easier D. Background Information: We’re almost there! I would just like to finish up by asking a few questions about your personal background. 1) Circle: [Male] [Female] 2) How old are you? ______ 3) Where were you born? ___________ 4) What is your occupation? __________ How long have you been in this position? ___ 5) How long have you been involved in the ASD community? ____________ Closing That’s all the questions I have. Thanks for your time! Are there any other questions you have or anything you would like to add before we wrap up? 218 Proveedor del Tratamiento/Cuido para Autismo: Formulario de Entrevista Entrevista # and iniciales: ________ Investigadora: MC Fecha: __________ Introduction: Hola y gracias por estar aquí. Esta entrevista es parte de un estudio explorando como padres de niños con autismo y miembros de la comunidad del autismo piensan del autismo. Este estudio forma parte de mi disertación doctoral dirigido bajo la supervisión de Dra. Linda Hunt. Quiero explorar como miembros de la comunidad del autismo conceptualizan el autismo y quiero examinar como logran acceso a los recursos por los individuos con ASD. Quiero enfatizar que no hay ni respuestas correctas ni respuestas incorrectas. Solamente quiero saber qué piensas y todo lo que me dices va quedar completamente en anónimo. Tus respuestas no van a ser discutidos con otros miembros de la comunidad ni con ningún tipo de proveedores de tratamiento. Además, sabes que siempre puedes elegirte no contestar cualquier pregunta que te haga sentir incómodo. Puedes parar esta entrevista en cualquier punto si no quieres seguir participando. ¿Tienes alguna pregunta antes de empezar? 1) Al comienzo, quiero saber un poquito más de ti. ¿Cómo es un día típico para ti? 2) ¿Cómo es ser una parte de la comunidad del autismo? A. Conceptualización del Autismo: Gracias por compartir. Siguiente, quiero saber un poco más de como piensas del autismo. 1) ¿En tus propias palabras, que es el autismo? B. Discurso de Causalidad y Curación del Autismo 1) ¿Cómo es que alguien llega tener autismo? 2) ¿Cuáles son algunos síntomas del autismo? [PROBE]: ¿Cuáles son los más difíciles para el niño y para usted? 3) ¿Crees que el autismo puede ser curado? 4) ¿Crees que el autismo se puede prevenir? 219 C. Acceso a los Recursos: Ahora quiero cambiar el tema un poco y empezar con preguntas sobre los tipos de recursos y servicios disponibles en la isla para individuos con autismo. También quiero saber cómo es que la comunidad logra acceso a estos recursos. Un recurso o servicio puede incluir muchas cosas como servicios educacionales, cuido médico, terapia de comportamiento, y apoyo en la comunidad. ¿Hay alguna pregunta antes que comenzar? 1) ¿Cuáles son los recursos y servicios disponibles en Puerto Rico para individuos con autismo y sus familias? 2) ¿Cuáles son las dificultades en el acceso de estos recursos? 3) ¿Tienes alguna recomendación para mejorar el acceso a los servicios? D. 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