Abstract
What does it mean to be an expert on autism? And how do you become one? This chapter explores these questions in the context of ethnographic research conducted in an autism association created and run by parents with the help of a speech therapist, that provides services for families of autistic children in a low-income neighborhood in Rio de Janeiro, Brazil. Based on a discussion of the experiences of parents in the association of navigating their local sociocultural worlds with their autistic children, the chapter argues for a context-sensitive model of autism expertise. Rather than becoming experts simply by virtue of acquiring credentialed scientific knowledge about autism, these parents learn to convey knowledge about their sociocultural worlds to their autistic child. The process involves learning about the particular cognitive styles of their autistic children, while not losing sight of the possibilities and limitations afforded by the sociocultural worlds they inhabit.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
Borkman, T. 1976. “Experiential Knowledge: A New Concept for the Analysis of Self-help Groups.” Social Science Review 50: 445–455.
Boyer, Dominic. 2008. “Thinking Through the Anthropology of Experts.” Anthropology in Action 15 (2): 38–46.
Carr, E. Summerson. 2010. “Enactments of Expertise.” Annual Review of Anthropology 39: 17–32.
Chew, Kristina. 2013. “Autism and the Task of the Translator.” In Worlds of Autism, edited by Joyce Davidson and Michael Orsini, 305–317. Minneapolis: University of Minnesota Press.
Collins, Harry. 2010. Tacit & Explicit Knowledge. Chicago: University of Chicago Press.
Collins, Harry, and Robert Evans. 2002. “Third Wave of Science Studies: Studies of Expertise and Experience.” Social Studies of Science 32 (2): 235–296.
Collins, Harry, and Robert Evans. 2007. Rethinking Expertise. Chicago: University of Chicago Press.
Epstein, Steven. 1995. “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials.” Science, Technology, & Human Values 20 (4): 408–437.
Eyal, Gil, and Brendan Hart. 2010. “How Parents of Autistic Children Became Experts on their Own Children: Notes Towards a Sociology of Expertise.” Paper Written for the Annual Conference of the Berkeley Journal of Sociology. https://works.bepress.com/gil_eyal/1/.
Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren, and Natasha Rossi. 2010. The Autism Matrix: The Social Origins of the Autism Epidemic. Cambridge: Polity Press.
Garro, Linda. 2007 [2005]. “‘Effort After Meaning’ in Everyday Life.” In A Companion to Psychological Anthropology, edited by Conerly Casey and Robert B. Edgerton, 48–71. Malden, Oxford, and Victoria: Blackwell.
Gone, Joseph P. 2015. “Reconciling Evidence-Based Practice and Cultural Competence in Mental Health Services: Introduction to a Special Issue.” Transcultural Psychiatry 52 (2): 139–149.
Hart, Brendan. 2014. “Autism Parents & Neurodiversity: Radical Translation, Joint Embodiment and the Prosthetic Environment.” BioSocieties 9 (3): 284–303.
Jasanoff, Sheila. 2004. The Idiom of Co-production. In States of Knowledge: The Co-production of Science and Social Order, edited by Sheila Jasanoff, 1–12. New York: Routledge.
Mello, Ana Maria, Helena Ho, Inês Dias, and Meca Andrade. 2013. Retratos do autismo Brasil. Secretaria de Direitos Humanos da Presidência da República (SDH/PR). https://www.autismo.org.br/site/images/Downloads/RetratoDoAutismo-20131001.pdf.
Ochs, Elinor, Tamar Kremer-Sadlik, Karen Gainer Sirota, and Olga Solomon. 2004. “Autism and the Social World: An Anthropological Perspective.” Discourse Studies 6 (2): 147–183.
Polanyi, Michael (1966) 2009. The Tacit Dimension. Chicago and London: The University of Chicago Press.
Rabeharisoa, Vololona. 2003. “The Struggle Against Neuromuscular Diseases in France and the Emergence of the ‘Partnership Model’ of Patient Organisation.” Social Science & Medicine 57: 2127–2136.
Rios, Clarice, and Barbara Costa Andrada. 2015. “The Changing Face of Autism in Brazil.” Culture, Medicine and Psychiatry 39 (2): 213–234.
Whitley, Rob. 2007. “Cultural Competence, Evidence-Based Medicine, and Evidence-Based Practices.” Psychiatric Services 58 (12): 1588–1590.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2018 The Author(s)
About this chapter
Cite this chapter
Rios, C. (2018). Expert on Your Own Child, Expert on Your Own World—Reinventing Autism Expertise(s). In: Fein, E., Rios, C. (eds) Autism in Translation. Culture, Mind, and Society. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-93293-4_9
Download citation
DOI: https://doi.org/10.1007/978-3-319-93293-4_9
Published:
Publisher Name: Palgrave Macmillan, Cham
Print ISBN: 978-3-319-93292-7
Online ISBN: 978-3-319-93293-4
eBook Packages: Behavioral Science and PsychologyBehavioral Science and Psychology (R0)