Culture, Medicine, and Psychiatry

, Volume 40, Issue 3, pp 475–506 | Cite as

Asperger’s Syndrome, Subjectivity and the Senses

  • Ellen BadoneEmail author
  • David Nicholas
  • Wendy Roberts
  • Peter Kien
Illness Narratives


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.


Autism Asperger’s Narrative Theory of mind Phenomenology 



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

Compliance with Ethical Standards

Conflict of Interest

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.

Informed Consent

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).


  1. AANE (Asperger/Autism Network) 2014 Asperger’s Syndrome and the DSM-5., accessed August 31, 2015.
  2. Aboujaoude, Elias 2008 Compulsive Acts: A Psychiatrist’s Tales of Ritual and Obsession. Berkeley and Los Angeles: University of California Press.Google Scholar
  3. Asperger, Hans 1991[1944] Autistic Psychopathy in Childhood. Translated and annotated by Uta Frith. In Autism and Asperger Syndrome, Uta Frith, ed., pp. 37–92. Cambridge: Cambridge University Press.Google Scholar
  4. Attwood, Tony 2007 The Complete Guide to Asperger’s Syndrome. London and Philadelphia: Jessica Kingsley.Google Scholar
  5. Attwood, Tony, Craig R. Evans and Anita Lesko, eds. 2014 Been There. Done That. Try This! An Aspie’s Guide to Life on Earth. London: Jessica Kingsley.Google Scholar
  6. Autistic Self Advocacy Network 2012 Loud Hands: Autistic People, Speaking. Washington, DC: The Autistic Press.Google Scholar
  7. Bagatell, Nancy 2010 From Cure to Community: Transforming Notions of Autism. Ethos 38(1):33–55.CrossRefGoogle Scholar
  8. Bakhtin, M.M. 1981 The Dialogic Imagination: Four Essays. Edited by Michael Holquist, translated by Caryl Emerson and Michael Holquist. Austin, TX: University of Texas Press.Google Scholar
  9. Baron-Cohen, Simon 1995 Mindblindness: An Essay on Autism and Theory of Mind. Cambridge, MA: MIT Press.Google Scholar
  10. Baron-Cohen, Simon 2000 Theory of Mind and Autism: A Fifteen-Year Review. In Understanding Other Minds: Perspectives From Developmental Cognitive Neuroscience. Second Edition. S. Baron-Cohen, H. Tager-Flusberg, D. J. Cohen, eds. pp. 3–20. Oxford: Oxford University Press.Google Scholar
  11. Baron-Cohen, Simon 2011 The Science of Evil: On Empathy and the Origins of Cruelty. New York: Basic Books.Google Scholar
  12. Baron-Cohen, Simon, Daniel C. Bowen, Rosemary J. Holt, Carrie Allison, Bonnie Auyeung, Michael V. Lombardo, Paula Smith, Meng-Chuan Lai 2015 The “Reading the Mind in the Eyes” Test: Complete Absence of Typical Sex Difference in ~400 Men and Women with Autism. PLOS/ONE, August 27. Accessed September 15, 2015. doi: 10.1371/journal.pone.0136521.
  13. Biehl, João 2005 Vita: Life in a Zone of Social Abandonment. Berkeley and Los Angeles: University of California Press.Google Scholar
  14. Biehl, João, Byron Good and Arthur Kleinman, eds. 2007 Subjectivity: Ethnographic Investigations. Berkeley and Los Angeles: University of California Press.Google Scholar
  15. Brezis, Rachel S. 2012 Autism as a Case for Neuroanthropology: Delineating the Role of Theory of Mind in Religious Development. In The Encultured Brain: An Introduction to Neuroanthropology. Daniel H. Lende and Greg Downey, eds. pp. 291–314. Cambridge, MA: MIT Press.Google Scholar
  16. Brezis, Rachel S., Thomas S. Weisner, Tamara C. Daley, Nidhi Singhal, Merry Barua and Shreya P. Chollera 2015 Parenting a Child with Autism in India: Narratives Before and After a Parent-Child Intervention Program. Culture, Medicine and Psychiatry 39:277–298.CrossRefGoogle Scholar
  17. Buchbinder, Mara 2010 Giving an Account of One’s Pain in the Anthropological Interview. Culture, Medicine and Psychiatry 34:108–131.CrossRefGoogle Scholar
  18. Buchbinder, Mara 2012 ‘Sticky’ Brains and Sticky Encounters in a U.S. Pediatric Pain Clinic. Culture, Medicine and Psychiatry 36:102–123.CrossRefGoogle Scholar
  19. Canetti, Elias 1935[1946] Auto-da-Fé. Translated by C. V. Wedgwood. London: Jonathan Cape.Google Scholar
  20. Carley, Michael John 2008 Asperger’s From the Inside Out. New York: Perigree.Google Scholar
  21. Cascio, M. Ariel 2014 New Directions in the Social Study of the Autism Spectrum: A Review Essay. Culture, Medicine and Psychiatry 38(2):306–311.CrossRefGoogle Scholar
  22. Cascio, M. Ariel 2015a Cross-Cultural Autism Studies, Neurodiversity, and Conceptualizations of Autism. Medicine and Psychiatry 39:207–212.CrossRefGoogle Scholar
  23. Cascio, M. Ariel 2015b Rigid Therapies, Rigid Minds: Italian Professionals’ Perspectives on Autism Interventions. Culture, Medicine and Psychiatry 39:235–253.CrossRefGoogle Scholar
  24. Chamak, B. and B. Bonniau 2013 Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France. Culture, Medicine and Psychiatry 37:405–426.CrossRefGoogle Scholar
  25. Clifford, James and George E. Marcus, eds. 1986 Writing Culture: The Poetics and Politics of Ethnography. Berkeley and Los Angeles: University of California Press.Google Scholar
  26. Cohen-Rottenberg, Rachel, eds. 2012 Autism and Empathy: Dispelling Myths and Breaking Stereotypes., accessed September 15, 2015.
  27. Crapanzano, Vincent 2010 ‘At the Heart of the Discipline’: Critical Reflections on Fieldwork. In Emotions in the Field: The Psychology and Anthropology of Fieldwork Experience. James Davies and Dimitrina Spencer, eds. pp. 55–78. Stanford: Stanford University Press.Google Scholar
  28. Dubisch, Jill and Michael Winkelman, eds. 2005 Pilgrimage and Healing. Tucson, AZ : University of Arizona Press.Google Scholar
  29. Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren and Natasha Rossi 2010 The Autism Matrix: The Social Origins of the Autism Epidemic. Cambridge UK: Polity.Google Scholar
  30. Eyal, Gil, Des Fitzgerald, Eva Gillis-Buck, Brendan Hart, Martine D Lappé, Daniel Navon, and Sarah S Richardson 2014 New Modes of Understanding and Acting on Human Difference in Autism Research, Advocacy and Care: Introduction to a Special Issue of BioSocieties. Biosocieties 9:233–240.Google Scholar
  31. Fabian, Johannes 2014[1983] Time and the Other: How Anthropology Makes its Object. New York: Columbia University Press.Google Scholar
  32. Fein, Elizabeth 2011 Innocent Machines: Asperger’s Syndrome and the Neurostructural Self. In Sociological Reflections on the Neurosciences. Martyn Pickersgill and Ira Van Keulen, eds., pp. 27–50. Bingley, UK: Emerald Group Publishing.CrossRefGoogle Scholar
  33. Fein, Elizabeth 2012 The Machine Within: An Ethnography of Asperger’s Syndrome, Biomedicine and the Paradoxes of Identity and Technology in the Late Modern United States. Ph.D. Dissertation, Department of Comparative Human Development, University of Chicago.Google Scholar
  34. Fein, Elizabeth 2015 Making Meaningful Worlds: Role-Playing Subcultures and the Autism Spectrum. Culture, Medicine and Psychiatry 39:299–321.CrossRefGoogle Scholar
  35. Finch, David 2012 The Journal of Best Practices. New York: Scribner.Google Scholar
  36. Fitzgerald, Des 2014 The Trouble with Brain Imaging: Hope, Uncertainty and Ambivalence in the Neuroscience of Autism. Biosocieties 9:241–261.CrossRefGoogle Scholar
  37. Frank, Arthur W. 1995 The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press.CrossRefGoogle Scholar
  38. Frith, Uta 1991 Autism and Asperger Syndrome. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  39. Garro, Linda C. 1992 Chronic Illness and the Construction of Narratives. In Pain as Human Experience: An Anthropological Perspective. M.J. DelVecchio Good, P. Brodwin, B. Good, and A. Kleinman, eds., pp. 100–137. Berkeley: University of California Press.Google Scholar
  40. Garro, Linda C. 1994 Narrative Representations of Chronic Illness Experience: Cultural Models of Illness, Mind, and Body in Stories Concerning the Temporomandibular Joint (TMJ). Social Science and Medicine 38:775–788.CrossRefGoogle Scholar
  41. Garro, Linda C. and Cheryl Mattingly, eds. 2000 Narrative and the Cultural Construction of Illness and Healing. Berkeley: University of California Press.Google Scholar
  42. Geertz, Clifford 1973 The Interpretation of Cultures. New York: Basic.Google Scholar
  43. Gillis-Buck, Eva and Sarah Richardson 2014 Autism as a Biomedical Platform for Sex Differences Research. Biosocieties 9:262–283.CrossRefGoogle Scholar
  44. Grandin, Temple 1986 Emergence: Labelled Autistic (with Margaret M Scariano). New York: Warner Books.Google Scholar
  45. Grandin, Temple 2011 The Way I See It: A Personal Look at Autism and Asperger’s. Arlington, TX: Future Horizons.Google Scholar
  46. Grandin, Temple 2012 Different… Not Less. Inspiring Stories of Achievement and Successful Employment from Authors with Autism, Asperger’s, and ADHD. Arlington, TX: Future Horizons.Google Scholar
  47. Grinker, Roy Richard 2007 Unstrange Minds: Remapping the World of Autism. New York: Basic.Google Scholar
  48. Grinker, Roy Richard 2010 Commentary: On Being Autistic, and Social. Ethos 38(1):172–178.CrossRefGoogle Scholar
  49. Grinker, Roy Richard 2015 Reframing the Science and Anthropology of Autism. Culture, Medicine and Psychiatry 39:345–350.CrossRefGoogle Scholar
  50. Grinker, Roy Richard, Marshalyn Yeargin-Allsop and Coleen Boyle 2011 Culture and Autism Spectrum Disorders: The Impact on Prevalence and Recognition. In Autism Spectrum Disorders. David G. Amaral, Geraldine Dawson and Daniel H. Geschwind, eds. Pp. 112-136. Oxford and New York: Oxford University Press.CrossRefGoogle Scholar
  51. Grinker, Roy Richard and Kyungjin Cho 2013 Border Children: Interpreting Autism Spectrum Disorder in South Korea. Ethos 41(1):46–74.CrossRefGoogle Scholar
  52. Hacking, Ian 2007 Kinds of People: Moving Targets. Proceedings of the British Academy 151:285–318.Google Scholar
  53. Hacking, Ian 2009 Autistic Autobiography. Philosophical Transactions of the Royal Society B 364:1467–1473.CrossRefGoogle Scholar
  54. Hart, Brendan 2014 Autism Parents and Neurodiversity: Radical Translation, Joint Embodiment and the Prosthetic Environment. Biosocieties 9:284–303.CrossRefGoogle Scholar
  55. Kaufman, Sharon 2010 Regarding the Rise in Autism: Vaccine Safety Doubt, Conditions of Inquiry, and the Shape of Freedom. Ethos 38(1):8–32.CrossRefGoogle Scholar
  56. Kleinman, Arthur 1988 The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic.Google Scholar
  57. Landsman, Gail 2008 Reconstructing Motherhood and Disability in the Age of “Perfect” Babies. New York: Routledge.Google Scholar
  58. Lappé, Martine D. 2014 Taking Care: Anticipation, Extraction and the Politics of Temporality in Autism Science. Biosocieties 9:304–328.CrossRefGoogle Scholar
  59. Lawlor, Mary C. 2003 Mothering Work: Negotiating Healthcare, Illness and Disability, and Development. In Mothering Occupations: Challenge, Agency and Participation. S. A. Esdaile and J. A. Olson, eds. Pp. 306-323. Philadelphia: F.A. Davis.Google Scholar
  60. Lawlor, Mary C. 2010 Commentary: Autism and Anthropology? Ethos 38(1):167–171.CrossRefGoogle Scholar
  61. L’orange Fürst, Elisabeth 2015 Coming Back to Oneself: A Case of Anoxic Brain Damage from a Phenomenological Perspective. Culture, Medicine and Psychiatry 39:121–133.CrossRefGoogle Scholar
  62. Mattingly, Cheryl 1998 Healing Dramas and Clinical Plots: The Narrative Construction of Experience. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  63. Mattingly, Cheryl 2000 Emergent Narratives. In Narrative and the Cultural Construction of Illness and Healing. Cheryl Mattingly and Linda Garro eds. pp. 191–211. Berkeley and Los Angeles: University of California Press.Google Scholar
  64. Mattingly, Cheryl 2008 Reading Minds and Telling Tales in a Cultural Borderland. Ethos 36(1):136–154.CrossRefGoogle Scholar
  65. Mattingly, Cheryl 2010 The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley and Los Angeles: University of California Press.Google Scholar
  66. Mattingly, Cheryl 2014 Moral Laboratories: Family Peril and the Struggle for a Good Life. Berkeley and Los Angeles: University of California Press.CrossRefGoogle Scholar
  67. Nadesan, Majia Holmer 2005 Constructing Autism: Unravelling the “Truth” and Understanding the Social. London and New York: Routledge.Google Scholar
  68. Navon, Daniel and Gil Eyal 2014 The Trading Zone of Autism Genetics: Examining the Intersection of Genomic and Psychiatric Classification. Biosocieties 9:329–352.CrossRefGoogle Scholar
  69. Nicholsen, Nicole 2013 The Empathy Question: Theory of Mind, Culture, and Understanding., accessed September 15, 2015.
  70. Ochs, Elinor, Tamar Kremer-Sadlik, Karen Gainer Sirot, and Olga Salomon 2004 Autism and the Social World: An Anthropological Perspective. Discourse Studies (6)2:147–183.CrossRefGoogle Scholar
  71. Ochs, Elinor and Olga Solomon 2010 Autistic Sociality. Ethos 38(1):69–92.CrossRefGoogle Scholar
  72. Osteen, Mark, ed. 2008 Autism and Representation. London and New York: Routledge.Google Scholar
  73. Powers, Michael D. 2002 Asperger Syndrome and Your Child: A Parent’s Guide. New York: Harper Collins.Google Scholar
  74. Prince, Dawn Eddings 2010 An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives. Ethos 38(1):56–68.CrossRefGoogle Scholar
  75. Prince-Hughes, Dawn 2004 Songs of the Gorilla Nation: My Journey Through Autism. New York: Random House.Google Scholar
  76. Rabinow, Paul 1977 Reflections on Fieldwork in Morocco. Berkeley and Los Angeles: University of California Press.Google Scholar
  77. Rapp, Rayna and Faye Ginsburg 2001 Enabling Disability: Rewriting Kinship, Reimagining Citizenship. Public Culture 13(3):533–556.CrossRefGoogle Scholar
  78. Rapp, Rayna and Faye Ginsburg 2012 Anthropology and the Study of Disability Worlds. In Medical Anthropology at the Intersections: Histories: Activisms, and Futures. Marcia C. Inhorn and Emily A. Wentzell, eds. pp. 163–182. Durham and London: Duke University Press.Google Scholar
  79. Rapoport, Judith L. 1989 The Boy Who Couldn’t Stop Washing: The Experience and Treatment of Obsessive-Compulsive Disorder. New York: Penguin.Google Scholar
  80. Relia, Sachin 2014 Asperger Syndrome: History, Diagnosis and DSM-5 Changes. Psychiatry Advisor, December 12., accessed August 31, 2015.
  81. Rios, Clarice and Barbara Costa Andrada 2015 The Changing Face of Autism in Brazil. Culture, Medicine and Psychiatry 39:213–234.CrossRefGoogle Scholar
  82. Rosaldo, Renato 1989 Culture and Truth: The Remaking of Social Analysis. Boston: Beacon.Google Scholar
  83. Saperstein, Jesse A. 2010 Atypical: A Life with Asperger’s in 20 1/3 Chapters. New York: Perigree.Google Scholar
  84. Sarrett, Jennifer C. 2015a “Maybe at Birth There was an Injury”: Drivers and Implications of Caretaker Explanatory Models of Autistic Characteristics in Kerala, India. Culture, Medicine and Psychiatry 39:62–74.CrossRefGoogle Scholar
  85. Sarrett, Jennifer C. 2015b Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Keral, India and Atlanta, GA USA. Culture, Medicine and Psychiatry 39:254–276.CrossRefGoogle Scholar
  86. Sicile-Kira, Chantal 2006 Adolescents on the Autism Spectrum. New York: Penguin.Google Scholar
  87. Silverman, Chloe 2011 Understanding Autism: Parents, Doctors and the History of a Disorder. Princeton: Princeton University Press.CrossRefGoogle Scholar
  88. Sirota, Karen Gainer 2010 Narratives of Distinction: Personal Life Narrative as a Technology of the Self in the Everyday Lives and Relational Worlds of Children with Autism. Ethos 38(1):93–115.CrossRefGoogle Scholar
  89. Sterponi, Laura and Alessandro Fasulo 2010 ‘‘How to Go On”: Intersubjectivity and Progressivity in the Communication of a Child with Autism. Ethos 38(1):116–142.CrossRefGoogle Scholar
  90. Solomon, Olga 2008 Language, Autism and Childhood: An Ethnographic Perspective. Annual Review of Applied Linguistics 28:150–169.CrossRefGoogle Scholar
  91. Solomon, Olga 2010a Sense and the Senses: Anthropology and the Study of Autism. Annual Review of Anthropology 39:241–259.CrossRefGoogle Scholar
  92. Solomon, Olga 2010b What a Dog Can Do: Children with Autism and Therapy Dogs in Social Interaction. Ethos 38(1):143–166.CrossRefGoogle Scholar
  93. Solomon, Olga 2015 “But-He’ll Fall!”: Children with Autism, Interspecies Intersubjectivity, and the Problem of ‘Being Social’. Culture, Medicine and Psychiatry 39:323–344.CrossRefGoogle Scholar
  94. Solomon, Olga and Nancy Bagatell 2010 Introduction. Autism: Rethinking the Possibilities. Ethos 38(1):1–7.CrossRefGoogle Scholar
  95. Steward, Robyn 2013 The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum. London: Jessica Kingsley.Google Scholar
  96. Subbaraman, Nidhi 2014 Study on ‘Extreme Male Brain’ Theory of Autism Draws Critics. Spectrum News, August 25., accessed September 15, 2015.
  97. Szatmari, Peter 2004 A Mind Apart: Understanding Children with Autism and Asperger Syndrome. New York: Guilford.Google Scholar
  98. Tammet, Daniel 2006 Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant. New York: Free Press.Google Scholar
  99. Tammet, Daniel 2009 Embracing the Wide Sky. New York: Free Press.Google Scholar
  100. Tammet, Daniel 2014 Thinking in Numbers: On Life, Love, Meaning and Math. New York: Little Brown.Google Scholar
  101. Throop, C. Jason 2003 Articulating Experience. Anthropological Theory 3(2):219–241.CrossRefGoogle Scholar
  102. Throop, C. Jason 2010 Suffering and Sentiment: Exploring the Vicissitudes of Experience and Pain in Yap. Berkeley: University of California Press.Google Scholar
  103. Williams, Donna [1992]1999 Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl. London: Jessica Kingsley.Google Scholar
  104. Williams, Donna 1994 Somebody Somewhere: Breaking Free from the World of Autism. New York: Three Rivers Press.Google Scholar
  105. Williams, Donna 2006 The Jumbled Jigsaw: An Insider’s Approach to the Treatment of Autistic Spectrum ‘Fruit Salads’. London: Jessica Kingsley.Google Scholar
  106. Wing, Lorna 1981 Asperger Syndrome: A Clinical Account. Psychological Medicine. 11:115–129.CrossRefGoogle Scholar
  107. Yergeau, Melanie 2013 Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind. Disability Studies Quarterly 33(4). http://dsq-sds.or/article/view/3876, accessed September 15, 2015.

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  1. 1.McMaster UniversityHamiltonCanada
  2. 2.University of CalgaryCalgaryCanada
  3. 3.The Hospital for Sick ChildrenTorontoCanada

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