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The Political Economy of Autism

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The Political Economy of Autism The Political Economy of Autism Toby Rogers A thesis submitted to fulfil the requirements for the degree of Doctor of Philosophy, Department of Political Economy, School of Social and Political Sciences, Faculty of Arts and Social Sciences, University of Sydney, 2019. ii For R. & I. iii Statement of originality This is to certify that to the best of my knowledge, the content of this thesis is my own work. This thesis has not been submitted for any degree or other purposes. I certify that the intellectual content of this thesis is the product of my own work and that all the assistance received in preparing this thesis and sources have been acknowledged. Toby Rogers iv Acknowledgements I benefitted from an extraordinary supervisory team. Bill Dunn was the ideal supervisor for this project and our process was dialectical in the best sense of the word. Fran Collyer provided important sociological and historical perspectives that improved the text considerably. Frank Stilwell has been a trusted advisor since the early days of my candidature and gracefully helped to shape my research journey. The Department of Political Economy at the University of Sydney surpassed my expectations in every way. Ariel Salleh provided important counsel on feminist theory and practice. Elizabeth Hill was an excellent teaching mentor. Evan Jones and Gillian Hewitson added important perspectives to department seminars. I also learned a great deal from Tim Anderson, Michael Beggs, Dick Bryan, Gareth Bryant, Damien Cahill, Lynne Chester, Joseph Collins, Martijn Konings, Adam Morton, Rebecca Pearse, and Susan Schroeder. During the early days of this project, when I was still trying to figure out whether it was possible to tackle a topic like this, Juliet Bennett and Emily Blizzard provided vital encouragement and support and they have continued to be among its biggest champions. Matt Costa provided expert counsel and always made me laugh. Anna Morbiato understood this project instantly and intuitively and provided helpful feedback. I learned and grew intellectually through interactions with an extraordinary cohort of political economy postgraduate students including Janin Bredehoeft, Janet Burstall, Raul Holz Cárcamo, Matt Costa, Valentina Curcetti, Huon Curtis, Tansel Guclu, Troy Henderson, Elizabeth Humphrys, Kieran Latty, Oliver Levingston, Minh Duc Luu, Kiran Maharjan, Claire Parfitt, Richard Parkin, David Primrose, Zihui Qiu, Javier Recabarren, Lee Ridge, Antonia Settle, Jeanette Sheridan, Anna Sturman, Emma To, Lia Weitzel, Llewellyn Williams-Brooks, and Matt Withers. I also benefitted from discussions with classmates in other departments including Mom Bishwakarma, Dante Choque Caseres, Gil Hizi, Haneol Lee, Emma Lees, Brooke McArthur, Renita Moniaga, Aletha Penrith, Klaus Radityo Tan, Claudia Sirdah, and Bin Wang. v Petra Klein was a key resource for helping me to understanding alternative health ontologies. Cecilia Macaulay provided helpful counsel and introduced me to extraordinary people at her legendary share house. Tori Dixon-Whittle was an ally and voice of wisdom throughout the writing of the thesis. Beth Hayden helped solve many seemingly intractable problems. Jon Elms is a warrior for healthy kids and an inspiration to me. DeLona Campos-Davis helped me make critical edits at the end. Amory Starr was a mentor and role model. I benefitted from the extraordinary cross- disciplinary learning environment at the annual summer school led by Nikolas Kompridis and the staff of the Institute for Social Justice at Australian Catholic University. I appreciate Brian Martin’s courageous leadership in moderating controversial debates in the sciences. An Endeavour Scholarship from the Australian Department of Education and Training funded this research. I am deeply grateful to the Australian people for their generosity and goodwill in supporting this international exchange. I am grateful to my mother, Dr. Sharon Rogers, who instilled a lifelong love of language and made extraordinary sacrifices over decades to support the education of my brothers and me. My dad, Rev. Dr. Jack Rogers, who passed away during the second year of my candidature, showed me how ideas can change the world. My eldest brother, Matt Rogers, kept me supplied with books. My middle brother, Dr. John Rogers and my sister in law Chi Nguyen Rogers, provided helpful counsel and support. I am grateful to Anne and Ross Alford for giving me a home away from home in Australia. While I have benefitted enormously from my interactions with such an extraordinary community, any mistakes or errors in this thesis are my own. vi Abstract 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% of GDP) in 2015; if autism continues to increase at its current rate, autism will cost the U.S. over $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. vii List of abbreviations and acronyms AAP: American Academy of Pediatrics ACIP: Advisory Committee on Immunization Practices (U.S.) AMA: American Medical Association ASD: autism spectrum disorders ATSDR: Agency for Toxic Substances and Disease Registry (U.S.) BBP: benzyl butyl phthalate BPA: bisphenol A CDC: Centers for Disease Control and Prevention (U.S.) CI: 95% confidence interval CMSRI: Children’s Medical Safety Research Institute COI: financial conflicts of interest COID: Committee on Infectious Diseases (American Academy of Pediatrics) CRO: contract research organisation DBP: dibutyl phthalate DEHP: diethylhexyl phthalate DES: diethylstilbestrol DIDP: diisodecyl phthalate DINP: diisononyl phthalate dl = decilitre = 10 millilitres = 1/100th of a litre DNOP: di-n-octyl phthalate DTaP: diphtheria, tetanus, and acellular pertussis vaccine. EMF: electromagnetic frequency EPA: Environmental Protection Agency (U.S.) FDA: Food and Drug Administration (U.S.) FOIA: Freedom of Information Act (U.S.) GACVS: Global Advisory Committee on Vaccine Safety GAO: Government Accountability Office (U.S.) GSK: GlaxoSmithKline HBV: hepatitis B virus Hep B: hepatitis B vaccine HHS: Department of Health and Human Services (U.S.) viii Hib: haemophilus influenzae type b vaccine HPV: human papillomavirus HR: hazard ratio ICAN: Informed Consent Action Network IOM: Institute of Medicine (renamed the National Academy of Medicine effective 1 July, 2015) (U.S.) IPV: inactivated poliovirus vaccine KOL: key opinion leader MEHP: mono (2-ethylhexyl) phthalate µg: microgram (one millionth of a gram) MMR: measles, mumps, and rubella vaccine MRL (ATSDR): minimal risk level MRL (USDA): maximum residue limit or maximum residue level NVAC: National Vaccine Advisory Committee NCVIA: National Childhood Vaccine Injury Act of 1986 ng: nanogram (one billionth of a gram) NIH: National Institutes of Health (U.S.) NIMH: National Institute of Mental Health (U.S.) NOAEL: no observed adverse effect level NTP: National Toxicology Program (U.S.) OR: odds ratio PAHs: polycyclic aromatic hydrocarbons PBDE: polybrominated diphenyl ether PBO: piperonyl butoxide PCB: polychlorinated biphenyl PCV: pneumococcal conjugate vaccine PFC: perfluorinated compound PMA: professional medical association POE-15: polyethoxylated tallowamine POEA: polyoxyethyleneamine PSR: pharmaceutical sales representatives RFR: radiofrequency radiation RR: relative risk SSRI: selective serotonin reuptake inhibitor ix TBB: 2-ethylhexyl-2,3,4,5-tetrabromobenzoate TBPH: bis(2-ethylhexyl)-2,3,4,5-tetrabromophtalate Tdap: tetanus, diphtheria, and acellular pertussis vaccine TPP: triphenyl phosphate UC: University of California UN: United Nations UNEP: United Nations Environment Programme USDA: United States Department of Agriculture VAERS: Vaccine Adverse Events Reporting System (U.S.) VICP: Vaccine Injury Compensation Program (U.S.) VSD: Vaccine Safety Datalink (U.S.) WHO: World Health Organization x Styles
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