The Political Economy of Autism

Autism is a global epidemic. An estimated 1 in 40 children in Australia, 1 in 64 children in the U.K., and 1 in 36 children in the U.S. have an autism spectrum disorder (ASD). This is an enormous increase from the first known autism prevalence study in the U.S. in 1970, that established an autism prevalence rate of less than 1 per 10,000. Several studies have shown that changes in diagnostic criteria account for only a small fraction of the increased prevalence. Families of children on the spectrum face extraordinary additional expenses and decreased earnings as one parent often becomes a caregiver. Autism cost the U.S. $268 billion (1.5$1 trillion (3.6% of GDP) in 2025 (as a point of comparison, U.S. Defense Department spending is 3.1% of GDP). Over the last decade, several groups of leading epidemiologists, doctors, and public health experts have published consensus statements declaring that toxicants in the environment are contributing to the rising prevalence of neurodevelopmental disorders including autism. Beyond the consensus statements, a range of independent researchers have identified many additional factors that appear to increase autism risk. Given rising prevalence rates and the extraordinary impacts of ASD on individuals, families, and communities, what explains why public health authorities, thus far, have failed to ban or restrict toxicants that have been shown to increase autism risk? I argue that autism is not only a public health issue, it also represents a crisis of political economy. In this thesis I will show that: capitalism has transformed science and medicine from a focus on use values to a focus on exchange values; regulation is largely a reflection of political power not scientific evidence; and cultural and financial capture are blocking the sorts of regulatory responses that are necessary to stop the autism epidemic

Environmental Effects on Health: Ignorance and Undone Science

Considerable research has been completed showing that environmental exposures can have significant effects on people’s health, especially in terms of autoimmune conditions, cancers, and neurological and psychological conditions. Health effects are possible at exposure levels far below those generally considered safe by orthodox health authorities. A prime example is multiple chemical sensitivity (MCS), where sufferers themselves have made clear, short-term associations between health effects and low-level environmental exposures. The condition of MCS is not clearly definable and significantly overlaps with other, largely unrecognised health conditions including fibromyalgia (FMS), chronic fatigue syndrome (CFS), electro hypersensitivity syndrome (EHS) and chronic inflammatory response syndrome (CIRS). The orthodox medical diagnostic process is implicated in the production of ignorance on such health conditions. Despite the large amount of research showing health effects from low level environmental exposures, there remains much “undone science” in the field - research that could be done but isn’t. The reasons for undone science and the consequent societal ignorance are generally due to society’s ingrained desire for technological improvements. Industry, responsible for technological developments the use of chemical products or radiation devices, is not interested in possible health effects, so expensive scientific research into them is left undone. When subsequent research or firsthand experiences of health effects start to be realised there is ample evidence that the industries responsible for environmental exposures then become active in generating ignorance. Due to close ties with industry, medical and health systems become complicit in industry’s strategy, and knowledge is manipulated by the industry funding of scientific studies, which then influences the conclusions of the research. The support of industry products by institutions, including regulatory agencies, due to conflicts of interest also contributes to knowledge manipulation. Common industry strategies of generating ignorance also include using doubt, blame, power, industry shills, astroturfing, smear campaigns, media manipulation and fact checking services. Future generations of children who inherit contaminants from their conception will be most affected by the gross neglect of their effect on health. The carry-through of health effects and their magnification in subsequent generations is a tragedy in the making

Zebrafish as a Model for Developmental Neurotoxicity Assessment: The Application of the Zebrafish in Defining the Effects of Arsenic, Methylmercury, or Lead on Early Neurodevelopment

Developmental exposure to neurotoxic chemicals presents significant health concerns because of the vulnerability of the developing central nervous system (CNS) and the immature brain barrier. To date, a short list of chemicals including some metals have been identified as known developmental neurotoxicants; however, there are still numerous chemicals that remain to be evaluated for their potential developmental neurotoxicity (DNT). To facilitate evaluation of chemicals for DNT, the zebrafish vertebrate model system has emerged as a promising tool. The zebrafish possesses a number of strengths as a test species in DNT studies including an abundance of embryos developing ex utero presenting ease in chemical dosing and microscopic assessment at all early developmental stages. Additionally, rapid neurodevelopment via conserved molecular pathways supports the likelihood of recapitulating neurotoxic effects observed in other vertebrates. In this review, we describe the biological relevance of zebrafish as a complementary model for assessment of DNT. We then focus on a metalloid and two metals that are known developmental neurotoxicants (arsenic, methylmercury, and lead). We summarize studies in humans and traditional vertebrate models and then detail studies defining the toxicity of these substances using the zebrafish to support application of this model system in DNT studies

What’s the Story? Framing of Health Issues by the U.S. Centers for Disease Control and Prevention and Major Newspapers: A Qualitative Analysis

This qualitative analysis of the framing of health issues by the Centers for Disease Control and Prevention, one of the world’s premier health organizations, and by major U.S. newspapers analyzes the frames present in a sample of the CDC’s press releases, and the frames present in the contemporaneous (and often resulting) press coverage. This study focuses on communication surrounding public health events that occurred in the six-year period 2002–2007

Representation of autism in Vietnamese online news media between 2006 and 2016 : a thesis submitted in partial fulfilment of the requirements for the Doctor of Philosophy degree in Communication and Journalism at Massey University, Wellington, New Zealand

Listed in 2020 Dean's List of Exceptional ThesesBeing a parent advocate of the rights of children with autism, I have witnessed how the Vietnamese news media perpetuate misrepresentation, misinformation and disinformation about autism. As the first media study of its kind in Vietnam, this thesis set out to describe, interpret and explain the issue of misrepresentation, misinformation and disinformation about autism in the Vietnamese online news media between 2006 and 2016. The literature review in chapter 1 showed that existing studies of media representation of autism elsewhere in the world mostly used manual content and framing analysis. These revealed that autism was often represented as a medical, family or social problem, mediated by damaging stereotypes and stigmas. However, the existing literature lacked explanatory depth in illuminating the macro, meso and micro contexts that shaped the media representation. This thesis drew on the combination of cultural political economy, corpus framing analysis and critical discourse analysis to understand and explain how and why Vietnamese media and news sources shaped the meanings about autism in media discourse. This mix of quantitative and qualitative approaches demonstrated its relevance in examining complex issues, which required multiple political, economic, social and cultural reasonings. Theoretically, the synergy of cultural political economy and critical discourse analysis was also resourceful in problematising and explaining the constitutive relationship between discursive structures and social reality, as discussed in chapter 2. The cultural political economy analysis of Vietnam’s state, economy and society, including its media industry, in chapters 3 and 4 contextualised the empirical analysis of media texts in later chapters. The computerized corpus framing analysis in chapter 5 provided a broad thematic overview of the media discourse, as well as captures the voice and visibility of different actors in the corpus of media coverage about autism by the 11 most popular Vietnamese online news media outlets from 2006 to 2016. The critical discourse analysis of chapters 6, 7 and 8 then examined the ideological implications and power relations of three important frames which represented autism as, variously, a social policy issue, a medical problem or family story. The thesis found that Vietnamese online news media rarely framed autism as a social policy issue in a deliberate way, even though people with autism accounted for approximately 1 to 2% of the population and autism-related matters touch millions of family members and social actors. State officials were strikingly absent from the media coverage, indicating that the media did not hold institutional stakeholders accountable, even though different Vietnamese laws have stipulated the need for universal education, integration and facilitation of individuals with disabilities in social setting. This was a Vietnam-specific perspective which contributed to the diverse global media literature on autism representation. This study showed autism was predominantly represented in the medical model as a disease that needed to be cured, rather than as a life-long disability that needed social facilitation. Doctors and service providers had the most prominent voices in the media discourse. When professionals acted as the major media sources, the critical discourse analysis demonstrated how they abused their power and access to the media by making misleading claims, sometimes overstating the efficacy of their treatment methods for their own commercial interests. In family stories, this study showed that individuals on the autism spectrum were stereotyped with troubling behaviours that caused terror, pain and even family breakup, but they rarely had the chance to speak for themselves. Media representations of family narratives were also ridden with a medicalized language about intervention and normalization efforts by “heroic” warrior mothers. The pressure to fit in with social norms was so great that parents, especially mothers, set out to fight against autism and normalize individuals on the autism spectrum, rather than accept their life-long challenges and embrace their diversity. This finding was unique to Vietnam, given its collective culture, centred on conformity, belonging and submission of the minority to the majority’s expectations. This thesis contributes to both the scholarly body of knowledge in media and communication studies about autism representation and to the generally under-developed field of media and journalism research in Vietnam. It also suggests what solutions are available to address current problems in media representation about autism in Vietnam

Parenting a Child With Autism: Predictors of Parental Self-Efficacy

As the rate of children being diagnosed with autism spectrum disorder (ASD) increases, so too does the number of parents learning to cope with their child’s disability and its effects on their own health, well-being, and parental self-efficacy. The purpose of this study was to determine the extent to which subjective social status, parental social supports, and fatigue were factors predicting parental self-efficacy in parents of children diagnosed with ASD residing in the state of Oregon. Bandura’s social cognitive theory was used to frame this study. The sample for this study consisted of 120 parents of children diagnosed with ASD living in the state of Oregon. Ordinal logistic regression was employed in this quantitative study. Ordinal logistic regression indicated that subjective social status (Wald χ2(1) = 6.353, p = .012) had a positive but not significant predictive effect on parental self-efficacy, whereas fatigue (Wald χ2(1) = 22.851, p = .000) had a significant negative predictive effect on parental self-efficacy, and social supports (Wald χ2(1) = 8.980, p = .003) had a significant positive predictive effect on parental self-efficacy. Spearman’s ρ analysis revealed a weak positive relationship between subjective social status and parental social supports (rs (120) = .101, p \u3c .01). The results of this study may influence positive social change by assisting stakeholders in creating programs that not only enhance the parental self-efficacy of parents of children with ASD but can also assist in understanding their own health and well-being

Articulating the new normal(s) : mental disability, medical discourse, and rhetorical action.

“Articulating the New Normal(s): Mental Disability, Medical Discourse, and Rhetorical Action” studies the writing of people diagnosed with autism and post- traumatic stress disorder within online discussion boards related to mental health and outlines their unique rhetorical strategies for interacting with biomedical ideologies of psychiatry and activist discourses. The opening chapter situates this dissertation in relation to previous scholarship in Rhetoric, Disability Studies, and other fields. I also provide a summary of the set of mixed methods I use to gather and analyze my data, including rhetorical analysis, corpus analysis, and qualitative interviews. In Chapter 2, “Medical Terminology and Discourse Features of Online Discussions of Mental Health,” I explore the ways in which medical discourse appears in discussions of mental disability through medical terms that writers and speakers use when discussing a diagnosis. Using methods borrowed from linguistics, I demonstrate that the writers in my study make different linguistic choices than the general public, and that the most prominent differences are related to the social construction of mental health and medicine. In Chapter 3, “Inhabiting Biological Primacy with Chiasmic Rhetoric in Mental Health Forums,” I describe and analyze a variety of common topics in online conversations that connect mental health and expert knowledge of the brain. I argue that this connection of mental experience and brain science constitutes a chiasmic rhetoric. The writers foregrounded in this chapter acknowledge and accept much of the claims of medicine and neuroscience regarding the brain but, uniquely, work to divide that knowledge from the path of normativity and optimization. Chapter 4, “Classified Conversations: Psychiatry and Technical Communication in Online Spaces,” examines the practices of participants in online mental health discussion forums conversations as they interpret technical documents. I detail four salient forms of the manipulation of medical discourse in online communities. At the close of this chapter, I explain how these insights can inform academic study of writing in mental health contexts and transform the content and application of medical and technical texts. In Chapter 5, “Re-Forming Mental Health: Rhetorical Innovation and the Language of Advocacy,” I summarize and synthesize the core arguments of earlier chapters, with an extended caveat regarding the ethical dilemmas of this study. Finally, I offer a set of practical recommendations for different communities with which my research has been conversant, the fields of Rhetoric and Rhetoric of Health and Medicine, Disability Studies, and activism related to mental disabilities