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Autism parents & neurodiversity: Radical translation, joint embodiment and the prosthetic environment

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Abstract

It has become increasingly common to view and discuss autism as a form of difference, rather than a disorder. Moreover, the autism spectrum has generated new possibilities for personhood and social inclusion. These developments have typically been ascribed to the recent work of autistic autobiographers and autistic self-advocates associated with the neurodiversity movement, who are providing a sort of linguistic infrastructure to support autistic personhood. Drawing on historical and ethnographic research, this article makes the complementary and analogous claim that parents of autistic children have used autism therapies to create a technical infrastructure to support autistic personhood. The article follows an earlier genealogical thread to argue that parents have used the techniques and technologies of behavioral therapies (sometimes said to be incommensurable with neurodiversity’s philosophy) in ways that have actually helped establish this autism-as-difference view. They have done so by translating their child’s behaviors and utterances and engaging in forms of ‘joint embodiment’ with her to create enabling ‘prosthetic environments’ where her unique personhood can be recognized. Through an ethnographic focus on ‘prosaic technologies’ and the politics of everyday practice, the article also provides a thicker and more grounded account of what Ian Hacking calls the “looping effect of human kinds”.

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Notes

  1. For the broader history of changing ideas and definitions of autism, see Eyal et al, 2010; Feinstein, 2010; Grinker, 2007; Hacking, 2007; Nadesan, 2005; Silverman, 2011.

  2. I will not recapitulate the history of neurodiversity in detail here. The basic origin story has been somewhat standardized and can be found in a number of accounts by scholars, journalists or activists themselves (see Sinclair, 2005; Bumiller, 2008; Silverman, 2008; Solomon, 2008; Orsini, 2009; Ortega, 2009; Cascio, 2012).

  3. For films, see Loving Lampposts, Wretchers and Jabberers and Neurotypical.

  4. See Chew’s contribution to Savarese et al, 2009 for an argument for the compatibility of ABA and neurodiversity.

  5. See Hacking, 1986, 1994, 1995, 2007, for theoretical reflections and empirical applications of these concepts. See Draaisma, 2009; Eyal et al, 2010; Nadesan, 2005; Orsini, 2009; Ortega, 2009; Ortega and Choudhury, 2011, Murray, 2008) for engagements with them in studies of autism.

  6. Hacking (2009a, 2010a, 2010b) develops this line of thought in several articles.

  7. Some path-breaking scholars have used ethnographic methods to study autism (for example, Ochs et al, 2001; Park, 2008; Solomon, 2010; Solomon and Bagatell, 2010), although not to study the broader sociological processes through which the category autism is made and remade and new ideas about autism emerge and circulate (see Ochs et al, 2004, p. 174).

  8. See Landsman, 2009 for a similar argument, and Haldane and Crawford, 2010 for an autoethnographic account.

  9. Recent surveys support this finding. A survey of 176 families in Alberta Canada found that 93.8 per cent of children with autism in that area are being treated with complementary or alternative medicine, with the average family trying nine different treatments (Gibbard, 2005). Green et al (2006) found that parents in the United States, Canada and Australia use 111 different types of treatments in total, with a mean number of current treatments of 7.

  10. Thanks to Joshua Reno for pointing out this example and suggesting I discuss this ambivalence.

  11. This section draws on and expands arguments we make elsewhere (Eyal et al, 2010; Eyal and Hart, 2010).

  12. See Chew (2013) for an astute insider’s analysis of the “task of the translator” in autism.

  13. See also Rapp and Ginsburg, 2001 on the “unnatural histories” and “visions of lives lived against the grain of normalcy” in new disability narratives.

  14. I would like to thank one of the anonymous reviewers for suggesting this lovely formulation of one of this article’s main points.

  15. This is what Kockelman (2005) calls, in a different context, “semiotic strain” (p. 261).

  16. Some researchers have noted that the ‘natural’ course of autism is changing in response to autism therapies. See Catherine Lord’s discussion of the recent history of autism in relation to the debates in advance of about the forthcoming DSM-V’s release http://www.youtube.com/watch?v=up4sP1l1BMw, last accessed, August, 2012.

  17. I use ‘child’ here, but the same procedures are used with adults.

  18. See Reno, 2012 for more on PECS.

  19. In this way, it resembles the controversial therapy facilitated communication (FC) championed by some neurodiversity activists, where an autistic person types words while in physical contact with an aide whose role is to stabilize him or her physically and emotionally. See (Reno’s, 2012) outstanding article on PECS, FC and semiotic ideologies.

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Acknowledgements

I wish to thank the families who opened their homes to me and participated in this research, both in the United States and Morocco (their names are changed here). I would also like to thank the three anonymous reviewers for their very helpful comments and suggestions. Thanks to Kristina Chew for generously sharing her unpublished work with me. I am also grateful to Des Fitzgerald, Hilary Haldane, Dagmar Herzog, Kim Hopper, Ahmed Khanani, Andrew Lakoff, Dan Navon, Josh Reno, Lesley Sharp, Chloe Silverman and Michael Staub. Their detailed readings, comments and suggestions greatly improved this article. Special thanks to Gil Eyal and Anne Montgomery for commenting on multiple drafts. I, however, am solely responsible for any and all shortcomings. This article is based upon work supported by the National Science Foundation under Grant No. 1123214, as well as the Wenner-Gren Foundation, the Social Science Research Council-International Dissertation Research Fellowship and the American Institution for Maghrib Studies. I am very grateful for their generous support.

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    Brendan Hart

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Hart, B. Autism parents & neurodiversity: Radical translation, joint embodiment and the prosthetic environment. BioSocieties 9, 284–303 (2014). https://doi.org/10.1057/biosoc.2014.20

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