Expert on Your Own Child, Expert on Your Own World—Reinventing Autism Expertise(s)
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.
- Borkman, T. 1976. “Experiential Knowledge: A New Concept for the Analysis of Self-help Groups.” Social Science Review 50: 445–455.Google Scholar
- 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.Google Scholar
- 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.Google Scholar
- Garro, Linda. 2007 . “‘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.Google Scholar
- 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.
- Polanyi, Michael (1966) 2009. The Tacit Dimension. Chicago and London: The University of Chicago Press.Google Scholar
- Rios, Clarice, and Barbara Costa Andrada. 2015. “The Changing Face of Autism in Brazil.” Culture, Medicine and Psychiatry 39 (2): 213–234.Google Scholar