Abstract
This chapter examines how parents of children diagnosed with autism become captured by the notion of the “spectrum of autism.” As people navigate autism services to get assistance for themselves and their children, parents themselves play an important role in activating and reifying the new autism spectrum disorder (ASD) diagnosis. The investigation here uses institutional ethnography principles to trace the social relations and text–action sequences in the ASD diagnosis. The authors go on to demonstrate that developments in the ASD diagnosis and treatment are related to larger ruling relations of austerity, neoliberalism, and the increasing financialization of public resources.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Allen, K. (2012, November 4). The autism project: Autism research chair will look at bullying. The Toronto Star. Retrieved from http://www.thestar.com/news/investigations/2012/11/04/the_autism_project_autism_research_chair_will_look_at_bullying.html
American Psychiatric Association. (2013). Highlights of changes from DSM-IV-TR to DSM-5. Retrieved July 3 from http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf.
Ask an autistic—What’s wrong with Autism Speaks?. (2014, March 13). Youtube. Retrieved July 7, 2015, from https://www.youtube.com/watch?v=ez936r2F35U
Asperger Mentoring Program (AMP). (n.d.). Children’s learning projects. Retrieved July 7, 2015, from https://bebko.apps01.yorku.ca/clp/?page_id=132
Autistic Self Advocacy Network. (n.d.). Nothing about us without us. Retrieved July 7, 2015, from http://autisticadvocacy.org/
Autistic Self Advocacy Network. (2014a). ASAN letter: California should cover more than ABA. Retrieved July 19, 2015, from http://autisticadvocacy.org/2014/10/asan-letter-california-should-cover-more-than-aba/
Autistic Self Advocacy Network. (2014b). Joint letter to the sponsors of Autism Speaks. Retrieved July 19, 2015, from http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/
Autistic Self Advocacy Network. (2015). ASAN statement on JRC at Association for Behavior Analysis International conference. Retrieved July 19, 2015, from http://autisticadvocacy.org/2015/05/asan-statement-on-jrc-at-association-for-behavior-analysis-international-conference/
Bettelheim, B. (1967). The empty fortress. New York: The Free Press.
Blumberg, S. J., Bramlett, M. D., Kogan, M. D., et al. (2013). Changes in prevalence of parent-reported Autism Spectrum Disorder in school-aged U.S. children: 2007 to 2011-2012. National Health Statistics Report, 65, 1-11.
Boase, J. P. (2000). Beyond government? The appeal of public-private partnerships. Canadian Public Administration, 43, 75–92.
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics, 168, 721–128.
Burstow, B. (2015). Psychiatry and the business of madness: An ethical and epistemological accounting. New York: Palgrave Macmillan.
Deisinger, J. A. (2011). History of Autism Spectrum Disorders. In A. F. Rotatori, F. E. Obiakor, & J. P. Bakken (Eds.), History of special education (pp. 237–267). Bingley: Emerald Group Publishing Limited.
Devji, S. (2014). The intricacies of inclusive schooling. Unpublished manuscript, Department of Educational Leadership and Policy Studies, Ontario Institute for Studies in Education, Toronto, ON.
Eyal, G. (2013). For a sociology of expertise: The social origins of the autism epidemic. American Journal of Sociology, 118, 863–907.
Fritsch, K. (2015). Gradations of debility and capacity: Biocapitalism and the neoliberalization of disability relations. Canadian Journal of Disability Studies, 4(2), 12–48.
Getfield, J. (2015, June). Family engagement policy: Forging relationships that transform the other. Paper presented at annual conference of the Canadian Disability Studies Association, University of Ottawa, Ottawa.
Gordon, A. (2015, April 17). Chronic wait times persist for families coping with autism. The Toronto Star. Retrieved from http://www.thestar.com/life/2015/04/17/chronic-wait-times-persist-for-families-coping-with-autism.html
Grand Challenges Canada. (2013, November 21). Imaginative: 83 bold innovations to improve global health receive grand challenges Canada funding. Retrieved December 6, 2015, from http://www.grandchallenges.ca/wp-content/uploads/StarsinGlobalHealth-Round5-NewsRelease-Nov2013-EN.pdf.
Green, V. A. (2007). Parental experience with treatments for autism. Journal of Developmental and Physical Disabilities, 19, 91–101.
Gruson-Wood, J. (2013, June). The edge of hybrid spaces: Autistic youth and the home-lab. Paper presented at the annual conference at Canadian Disability Studies Association Conference. Victoria: University of Victoria.
Gruson-Wood, J. (2014). Investigating the everyday practice of evidence-based behavioural therapies. Presentation for Healthcare, Technology and Place: CIHR Strategic Research and Training. Retrieved July 3, 2015, from https://www.kaltura.com/index.php/extwidget/preview/partner_id/1499521/uiconf_id/16451821/entry_id/1_kalpaa5n/embed/auto?&flashvars%5BstreamerType%5D=auto
Hande, M. J. (2014, May). Challenging the financialization of healthcare and disability through “commoning.” Paper presented at annual conference of the Society for Socialist Studies, St. Catherines: Brock University.
Hande, M. J., & Kelly, C. (2015). Organizing survival and resistance in austere times: Shifting disability activism and care politics in Ontario, Canada. Disability & Society, 30(7), 961–975.
Harvey, D. (2005). A brief history of neoliberalism. New York/Oxford: Oxford University Press.
Hastings, R. P., & Johnson, E. (2001). Stress in UK families conducting home-based behavioral intervention for the their young child with autism. Journal of Autism and Developmental Disorders, 31, 327–336.
Magnusson, J. (2013). Precarious learning and labour in financialized time. Brock Education, 22, 69–83.
Magnusson, J. (2015). Financialisation. In S. Mojab (Ed.), Marxism and feminism (pp. 142–162). London: Zed Books.
Matson, J. L., & Kozlowski, A. M. (2011). The increasing prevalence of autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 418–425.
McGuire, A. (2015). Life worth defending: Bio-political frames of terror in the war on autism. In S. Tremain (Ed.), Foucault and the government of disability (2nd ed., pp. 350–371). Ann Arbor: University of Michigan Press.
McGuire, A. (2016). The war on autism: On normative violence and the cultural production of autism advocacy. Ann Arbor: University of Michigan Press.
Miller, P., & Power, M. (2013). Accounting, organizing, and economizing: Connecting accounting research and organization theory. The Academy of Management Annals, 7(1), 557–605. doi:10.1080/19416520.2013.783668
Miller, V. A., Schreck, K. A., Mulick, J. A., & Butter, E. (2011). Factors related to parents’ choices of treatments for their children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 6, 87–95.
Ne’eman, A. (2010). The future (and the past) of autism advocacy, or why the ASA’s magazine, the advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30.
Ontario Ministry of Children and Youth Services. (2015). Programs and services for children with autism: Who can receive autism intervention program services. Retrieved July 3, 2015, from http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/autism/programs.aspx
Opportunity Analyzer: Autism Spectrum Disorder—Opportunity Analysis and Forecasts to 2018. (2014). ASD reports. Retrieved July 3, 2015, from https://www.asdreports.com/market-research-report-101078/opportunityanalyzer-autism-spectrum-disorder-opportunity-analysis-forecasts
Raz, M. (2014). Deprived of touch: How maternal and sensory deprivation theory converged in shaping early debates over autism. History of the Human Sciences, 27(2), 75–96.
Sanger, T. (2014, September 19). Did corporate tax cuts really pay for themselves as Harper claims? Huffington Post Canada. Retrieved August 4, from http://www.huffingtonpost.ca/toby-sanger/corporate-tax-cuts_b_5844710.html
Secret Agent Society: Operation Regulation. (n.d.). Developmental Disabilities and Mental Health Lab, York University. Retrieved July 7, 2015, from http://ddmh.lab.yorku.ca/secret-agents-society
Secret Agent Society. Solving the Mystery of Social Encounters. (n.d.). Social Skills Training Institute. Retrieved June 3, 2015, from http://www.sst-institute.net.
The Sinneave Family Foundation. (2015). Partners. Retrieved July 7, 2015, from http://www.theabilityhub.org/about/partners.
Smith, D. (2005). Institutional ethnography: A sociology for people. Landham: Altamira Press.
Spectrum of Hope, About Autism. (2015). Spectrum of Hope Foundation. Retrieved February 11, 2015, from http://spectrumofhope.org/
Verhoeff, B. (2013). Autism in flux: A history of the concept from Leo Kanner to DSM-5. History of Psychiatry, 24(4), 442–458.
Wagner, E. L. (2010). The parent check-up (PCU): Needs analysis, program development, service engagement, and feasibility in the applied behavior analysis setting (Doctoral dissertation). Retrieved from Proquest. (3421002).
Walden, R. (2012). Autism: Origins unknown, but women still get the blame. The Women’s Health Activist, 37, 11.
Whiteside, H. (2009). Canada’s health care crisis: Accumulation by dispossession and the neoliberal fix. Studies in Political Economy, 84, 79–100.
Whiteside, H. (2011). Unhealthy policy: The political economy of Canadian public-private partnership hospitals. Health Sociology Review, 20, 258–268.
Whooley, O. (2014). Nosological reflections: The failure of DSM-5, the emergence of RDoC, and the decontextualization of mental distress. Society and Mental Health, 4(2), 92–110.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 The Author(s)
About this chapter
Cite this chapter
Hande, M.J., Taylor, S., Zorn, E. (2016). Operation ASD: Philanthrocapitalism, Spectrumization, and the Role of the Parent. In: Burstow, B. (eds) Psychiatry Interrogated. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-41174-3_5
Download citation
DOI: https://doi.org/10.1007/978-3-319-41174-3_5
Published:
Publisher Name: Palgrave Macmillan, Cham
Print ISBN: 978-3-319-41173-6
Online ISBN: 978-3-319-41174-3
eBook Packages: Behavioral Science and PsychologyBehavioral Science and Psychology (R0)