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Asperger’s Syndrome, Subjectivity and the Senses

Abstract

Situated at the intersection of anthropological work on illness narratives and research on the anthropology of autism, this paper is a close reading of an autobiographical narrative recounted by Peter, a young man diagnosed with Asperger’s Syndrome, a type of autism spectrum disorder (ASD). Responding to Solomon’s (2010a:252) call for phenomenologically grounded accounts of “the subjective, sensory, and perceptual experiences of autism … based on personal narratives and practices of being and self-awareness,” this paper calls into question key assumptions in the clinical and popular literature about ASD relating to theory of mind, empathy, capacity for metaphorical thinking, and ASD as a life-long condition.

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Notes

  1. Related work has been carried out on the social and cultural context of autism by scholars in sociology (Eyal et al. 2010), communications studies (Nadesan 2005), and the humanities (Osteen 2008). In addition, a 2014 special issue of the journal Biosocieties brings a science and technology studies focus to bear upon autism research, examining how “around the still-emerging category of autism, a productive space has emerged for scientific, medical and political actors, as well as people diagnosed with autism and their allies, to actually reconfigure and rethink the ways that complex biosocial spaces of research, action and care are structured and held together” (Fitzgerald 2014:242; see also Eyal et al. 2014; Gillis-Buck and Richardson 2014; Hart 2014; Lappé 2014; Navon and Eyal 2014).

  2. See Attwood (2007:172–201), Powers (2002:8), Sicile-Kira (2006:37) and Szatmari (2004), among others, for discussion of special interests and Asperger’s Syndrome.

  3. See also Landsman (2008).

  4. Using fMRI technology and genotyping, Baron-Cohen and his team claim to have identified at least ten areas of the brain and four genes associated with empathy (2011:28, 138).

  5. For details about the Income and Employment supports provided by this program, see: http://www.mcss.gov.on.ca/en/mcss/programs/social/odsp/ (consulted April 20, 2015).

  6. Peter’s formal style of speech is similar to that of many people diagnosed with Asperger’s, as Hans Asperger noted in his report on the group of children who formed the basis for his first description of the condition. He characterized some of them as speaking like adults and acting like absent-minded professors, giving rise to the stereotype of children with Asperger’s Syndrome as “little professors” (Asperger 1991[1944]:59, 74).

  7. As Hart (2014) suggests, the dichotomy between the discourses of cure for autism and neurodiversity may be overemphasized. His ethnographic fieldwork in the U.S. and Morocco indicates that parents frequently draw upon behavioral therapies such as ABA to translate their children’s actions in everyday social settings, in ways that present these autistic children as complex subjects with rich emotional lives and intentionality. Parents thus use ABA and the discourse of cure to promote a kind of autistic personhood very similar to that called for by the neurodiversity movemet (Hart 2014:293–294).

  8. In this respect, Peter’s story resembles all autobiographical narratives, which are inevitably incomplete. Mattingly (2014:233) recognizes this open-endedness in her concluding sentence to her book: “To end with their lives is to end in suspense, for it is still not clear what the future may bring.”.

  9. See, for example, Fabian 2014[1983].

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Funding

The research on which this paper is based was funded by the Social Sciences and Humanities Research Council of Canada (0410-2008-1418).

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Correspondence to Ellen Badone.

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Ellen Badone declares that she has no conflict of interest. David Nicholas declares that he has no conflict of interest. Wendy Roberts declares that she has no conflict of interest. Peter Kien declares that he has no conflict of interest.

Research Involving Human Participants

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study. This study was approved by the Research Ethics Board at The Hospital for Sick Children, Toronto (Sick Kids REB File Number 1000014272).

Additional information

Peter Kien is the pseudonym chosen by the young man whose story is told in this paper. We would like to acknowledge his contribution to the paper without compromising his anonymity. The pseudonym was chosen because Peter Kien is the name given to the protagonist of Elias Canetti’s 1935 novel “Auto-da-”.

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Badone, E., Nicholas, D., Roberts, W. et al. Asperger’s Syndrome, Subjectivity and the Senses. Cult Med Psychiatry 40, 475–506 (2016). https://doi.org/10.1007/s11013-016-9484-9

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Keywords

  • Autism
  • Asperger’s
  • Narrative
  • Theory of mind
  • Phenomenology