Expert on Your Own Child, Expert on Your Own World—Reinventing Autism Expertise(s)

  • Clarice Rios
Part of the Culture, Mind, and Society book series (CMAS)


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.


  1. Borkman, T. 1976. “Experiential Knowledge: A New Concept for the Analysis of Self-help Groups.” Social Science Review 50: 445–455.Google Scholar
  2. Boyer, Dominic. 2008. “Thinking Through the Anthropology of Experts.” Anthropology in Action 15 (2): 38–46.CrossRefGoogle Scholar
  3. Carr, E. Summerson. 2010. “Enactments of Expertise.” Annual Review of Anthropology 39: 17–32.CrossRefGoogle Scholar
  4. 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
  5. Collins, Harry. 2010. Tacit & Explicit Knowledge. Chicago: University of Chicago Press.CrossRefGoogle Scholar
  6. Collins, Harry, and Robert Evans. 2002. “Third Wave of Science Studies: Studies of Expertise and Experience.” Social Studies of Science 32 (2): 235–296.CrossRefGoogle Scholar
  7. Collins, Harry, and Robert Evans. 2007. Rethinking Expertise. Chicago: University of Chicago Press.CrossRefGoogle Scholar
  8. 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.CrossRefGoogle Scholar
  9. 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.
  10. 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
  11. 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.Google Scholar
  12. 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.CrossRefGoogle Scholar
  13. Hart, Brendan. 2014. “Autism Parents & Neurodiversity: Radical Translation, Joint Embodiment and the Prosthetic Environment.” BioSocieties 9 (3): 284–303.CrossRefGoogle Scholar
  14. 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.CrossRefGoogle Scholar
  15. 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).
  16. 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.CrossRefGoogle Scholar
  17. Polanyi, Michael (1966) 2009. The Tacit Dimension. Chicago and London: The University of Chicago Press.Google Scholar
  18. 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.CrossRefGoogle Scholar
  19. Rios, Clarice, and Barbara Costa Andrada. 2015. “The Changing Face of Autism in Brazil.” Culture, Medicine and Psychiatry 39 (2): 213–234.Google Scholar
  20. Whitley, Rob. 2007. “Cultural Competence, Evidence-Based Medicine, and Evidence-Based Practices.” Psychiatric Services 58 (12): 1588–1590.CrossRefGoogle Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  • Clarice Rios
    • 1
  1. 1.Department of Social PsychologyFederal University of Rio de JaneiroRio de JaneiroBrazil

Personalised recommendations