BioSocieties

, Volume 3, Issue 3, pp 325–341 | Cite as

Fieldwork on Another Planet: Social Science Perspectives on the Autism Spectrum

  • Chloe Silverman
Critical Review

Abstract

The autism spectrum disorders are a group of neurodevelopmental syndromes of communication, behavior and social cognition. Over the past decade, they have received increasing attention from scholars in the social sciences. This research has been motivated by the prospect of critiquing and improving support services and therapies, by self-advocates who have argued that autism should be tolerated as a form of difference rather than treated as a disorder, and by the interest inherent in syndromes that seem to affect many of the attributes that we use to define personhood. In this commentary, I review social science research on the autism spectrum. I identify some key approaches in the work, including the idea of autism as a culture, transcultural comparisons, studies based on treatment strategies, investigations of subjectivity and interpersonal relations, and research on social movements. In the process, I suggest some further directions for this area of research. I also consider some reasons why the autism spectrum disorders are a particularly interesting site for studies of the ways that biomedical information is used to craft individual and group identities.

Keywords

Autism Spectrum Disorders Disability Neurodiversity Social Science 

Notes

Acknowledgements

Olga Solomon, Laura Sterponi, Dawn Prince-Hughes, Elizabeth Nickrenz, Melissa Park, Cre Engelke and Dario Mangano, as members of a panel on ‘Autism and Intersubjectivity across Life-Worlds’ at the 2007 American Anthropological Association conference in Washington, DC, gave me the opportunity as their discussant to think through some of the ideas for this review. I'm grateful to all of them for their excellent papers and the productive discussion that followed. Bob Vitalis offered thoughtful comments on multiple drafts, Phoebe Rose pointed out a number of references to work on autism that I had missed, and the members of the Disability Studies Reading Group at Penn State helped me think about issues relating to disability and citizenship in new ways.

References

  1. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, DSM-IVTR. Arlington, VA: American Psychiatric Association.Google Scholar
  2. American Psychological Association (1994). Facilitated communication. URL (accessed March 2008): www.apa.org/about/division/cpmscientific.html#5Google Scholar
  3. Asperger H. (1991/1944). ‘Autistic psychopathy’ in childhood. In Frith U. (Ed.), Autism and Asperger Syndrome, 37–92. Cambridge: Cambridge UP.CrossRefGoogle Scholar
  4. Bagatell N. (2007). Orchestrating voices: autism, identity and the power of discourse. Disability and Society, 22, 413–426.CrossRefGoogle Scholar
  5. Baggs A. (2007). In my own language. URL (accessed May 2008): www.youtube.com/watch?v=JnylM1hI2jc
  6. Baker D.L. (2006). Neurodiversity, neurological disability, and the public sector: notes on the autism spectrum. Disability and Society, 21, 15–29.CrossRefGoogle Scholar
  7. Baron-Cohen S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press.Google Scholar
  8. Baron-Cohen S. (2003). The essential difference: The truth about the male and female brain. New York: Basic Books.Google Scholar
  9. Baron-Cohen S., Leslie A.M., & Frith U. (1985). Does the autistic child have a ‘theory of mind’? Cognition, 21, 37–46.CrossRefGoogle Scholar
  10. Baron-Cohen S., Tager-Flusberg H., & Cohen D.J. (Eds.) (1993). Understanding other minds: Perspectives from autism. Oxford: Oxford UP.Google Scholar
  11. Belmonte M.K. (2008). Does the experimental scientist have a ‘theory of mind’? Review of General Psychology, 12, 192–204.CrossRefGoogle Scholar
  12. Bettelheim B. (1959). Joey: A mechanical boy. Scientific American, 200(3), 116–120.CrossRefGoogle Scholar
  13. Bettelheim B. (1967). The empty fortress: Infantile autism and the birth of the self. New York: The Free Press.Google Scholar
  14. Biklen D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314.CrossRefGoogle Scholar
  15. Biklen D. (2005). Autism and the myth of the person alone. New York: NYU Press.Google Scholar
  16. Billington T. (2006). Working with autistic children and young people: Sense, experience and the challenges for services, policies and practices. Disability & Society, 21, 1–13.CrossRefGoogle Scholar
  17. Bilu Y., & Goodman Y. (1997). What does the soul say? Metaphysical uses of facilitated communication in the Jewish ultraorthodox community. Ethos, 25, 375–407.CrossRefGoogle Scholar
  18. Brownlow C., & O'Dell L. (2006). Constructing an autistic identity: AS voices online. Mental Retardation, 44, 315–321.CrossRefGoogle Scholar
  19. Chamak B. (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health & Illness, 30, 76–96.CrossRefGoogle Scholar
  20. Chamak B., Bonniau B., Jaunay E., & Cohen D. (2008). What can we learn about autism from autistic persons? Psychotherapy and Psychosomatics, 77(5), 271–279.CrossRefGoogle Scholar
  21. Cohen L.H. (1995). Train go sorry: Inside a deaf world. New York: Vintage.Google Scholar
  22. Daley T. (2002a). The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry, 39, 531–550.CrossRefGoogle Scholar
  23. Daley T. (2002b). Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders, 32, 13–23.CrossRefGoogle Scholar
  24. Daley T. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58, 1323–1335.CrossRefGoogle Scholar
  25. Dawson G. et al. (2002). Defining the broader phenotype of autism: Genetic, brain, and behavioral perspectives. Development and Psychopathology, 14, 581–611.CrossRefGoogle Scholar
  26. Dawson M. (2004). The misbehaviour of behaviourists. URL (accessed May 2008): www.sentex.net/~nexus23/naa_aba.html
  27. Dawson M., Soulieres I., Gernsbacher M.A., & Mottron L. (2007). The level and nature of autistic intelligence. Psychological Science, 18, 657–662.CrossRefGoogle Scholar
  28. Dekker M. (2000). On our own terms: Emerging autistic culture. URL (accessed April 2008): autisticculture.com/index.php?page=articlesGoogle Scholar
  29. Dumit J. (1997). A digital image of the category of the person: PET scanning and objective self-fashioning. In G.L. Downey, & J. Dumit (Eds.), Cyborgs and citadels: Anthropological interventions in emerging sciences and technologies, 83–102. Santa Fe, NM: School of American Research Press.Google Scholar
  30. Engelke C., & Mangano D. (2007). Meaningful looks: Temporality in intersubjectivity in interactions involving children with severe autism. Paper presented at the American Anthropological Association conference, Washington, DC, November.Google Scholar
  31. Epstein S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values (Special Issue: Constructivist Perspectives on Medical Work: Medical Practices and Science and Technology Studies) 20, 408–437.CrossRefGoogle Scholar
  32. Esch B.E., & Carr J. E. (2004). Secretin as a treatment for autism: A review of the evidence. Journal of Autism and Pervasive Developmental Disorders, 34, 543–556.CrossRefGoogle Scholar
  33. Feinstein N. (2006). Silenced by science? Parents of autistic children finding their voice. Paper presented at the Society for Social Studies of Science conference, Vancouver, BC, November 2006.Google Scholar
  34. Fombonne E., Zakarian R., Bennett A., Meng L., & McLean-Heywood D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunizations. Pediatrics, 118, e139–e150.CrossRefGoogle Scholar
  35. Gernsbacher M.A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 138–152.Google Scholar
  36. Gernsbacher M.A., Dawson M., & Goldsmith H.H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14, 55–58.CrossRefGoogle Scholar
  37. Golan O., & Baron-Cohen S. (2006). Systemizing empathy: Teaching adults with Asperger Syndrome or high-functioning autism to recognize complex emotions using interactive multimedia. Development and Psychopathology, 18, 591–617.CrossRefGoogle Scholar
  38. Goth S.R., Chu R.A., Gregg J.P., Cherednichenko G., & Pessah I.N. (2006). Uncoupling of ATP-mediated calcium signaling and dysregulated interleukin-6 secretion in dendritic cells by nanomolar thimerosal. Environmental Health Perspectives, 114, 1083–1091.CrossRefGoogle Scholar
  39. Grandin T. (1995). Thinking in pictures: And other reports from my life with autism. New York: Vintage.Google Scholar
  40. Grandin T. (1986). Emergence: Labeled autistic. New York: Warner Books.Google Scholar
  41. Gray D.E. (2001). Accommodation, resistance and transcendence: three narratives of autism. Social Science & Medicine, 53, 1247–1257.CrossRefGoogle Scholar
  42. Gray D.E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 4, 734–749.CrossRefGoogle Scholar
  43. Gray D.E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56, 631–642.CrossRefGoogle Scholar
  44. Grinker R.R. (2008). Unstrange minds: Remapping the world of autism. New York: Basic Books.Google Scholar
  45. Hacking I. (2006). What is Tom saying to Maureen? London Review of Books, 11 May. URL (accessed May 2008): www.lrb.co.uk/v28/n09/hack01_.html
  46. Hacking I. (1999). Making up people. In Biagioli M. (Ed.), The science studies reader. New York: Routledge.Google Scholar
  47. Haddon M. (2003). The curious incident of the dog in the night-time. New York: Random House.Google Scholar
  48. Happe F., Ronald A., & Plomin R. (2006). Time to give up on a single explanation for autism. Nature Neuroscience, 9, 1218–1220.CrossRefGoogle Scholar
  49. Henry J. (1971). Pathways to madness. New York: Random House.Google Scholar
  50. Herbert M. (2005). Autism: A brain disorder or a disorder that affects the brain? Clinical Neuropsychiatry, 2, 354–379.Google Scholar
  51. Hobson-West P. (2007). ‘Trusting blindly can be the biggest risk of all’: Organized resistance to childhood vaccination in the UK. Sociology of Health & Illness, 29, 198–215.CrossRefGoogle Scholar
  52. Hornig M., Chian D., & Lipkin W.I. (2004). Neurotoxic effects of postnatal thimerosal are mouse strain dependent. Molecular Psychiatry, 9, 833–845.CrossRefGoogle Scholar
  53. Houston R., & Frith U. (2000). Autism in history: The case of Hugh Blair of Borgue. Cambridge: Blackwell.Google Scholar
  54. Howlin P., & Jones D.P.H. (1996). An assessment approach to abuse allegations made through facilitated communication. Child Abuse and Neglect, 20, 103–110.CrossRefGoogle Scholar
  55. Iverson P. (2007). Strange son: Two mothers, two sons, and the quest to unlock the hidden world of autism. Riverhead Trade.Google Scholar
  56. Jurecic A. (2007). Neurodiversity. College English, 69, 421–442.Google Scholar
  57. Kanner L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–50.Google Scholar
  58. Kaufman S.R. (2007). ‘An event in the history of thought’: Autism and vaccine safety doubt. Paper presented at the American Anthropological Association conference, Washington, DC, November.Google Scholar
  59. Konstantareas M.M. (1998). Allegations of sexual abuse by nonverbal autistic people via facilitated communication: testing of validity. Child Abuse & Neglect, 22, 1027–1041.CrossRefGoogle Scholar
  60. Kremer-Sadlik T. (2004). How children with autism and Asperger Syndrome respond to questions: A ‘naturalistic’ theory of mind task. Discourse Studies, 6, 185–206.CrossRefGoogle Scholar
  61. Landsman G. (2005). Mothers and models of disability. Journal of Medical Humanities, 26, 121–139.CrossRefGoogle Scholar
  62. Lovaas O.I., & Smith T. (1989). A comprehensive behavioral theory of autistic children: Paradigm for research and treatment. Journal of Behavioral Therapy & Experimental Psychiatry, 20, 17–29.CrossRefGoogle Scholar
  63. Maurice C. (1993). Let me hear your voice: A family's triumph over autism. New York: Ballantine Books.Google Scholar
  64. Miller J.K. (Ed.) (2003). Women from another planet? Our lives in the universe of autism. Bloomington, IN: 1st Books Library.Google Scholar
  65. Moon E. (2003). The speed of dark. Ballantine Books.Google Scholar
  66. Mostert M.P. (2001). Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31, 287–312.CrossRefGoogle Scholar
  67. Nadesan M. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the social. New York: Routledge.Google Scholar
  68. Nickrenz E. (2007). Sites of disorder: Asperger's Syndrome in individual bodies and interpersonal worlds. Paper presented at the American Anthropological Association conference, Washington, DC, November 2007.Google Scholar
  69. Nussbaum M.C. (2006). Frontiers of personhood: Disability, nationality, species membership. Cambridge, MA: Belknap Press.Google Scholar
  70. Ochs E., & Solomon O. (2004). Introduction: Discourse and autism. Discourse Studies, 6, 139–146.CrossRefGoogle Scholar
  71. Ochs E., Kremer-Sadlik T., Solomon O., & Sirota K. (2001). Inclusion as social practice: Views of children with autism. Social Development, 10, 399–419.CrossRefGoogle Scholar
  72. Ochs E., Kremer-Sadlik T., Sirota K.G., & Solomon O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6, 147–183.CrossRefGoogle Scholar
  73. Osborne L. (2002). American normal: The hidden world of Asperger Syndrome. New York: Copernicus Books.Google Scholar
  74. Park M. (2007). Embodied metaphors: The aesthetics of intersubjectivity for children with autism. Paper presented at the American Anthropological Association conference, Washington, DC, November.Google Scholar
  75. Prince-Hughes D. (2004). Songs of the gorilla nation: My journey through autism. New York: Harmony Books.Google Scholar
  76. Prince-Hughes D. (2007). An exceptional path: The emerging contexts of autistic parenthood from evolutionary, cultural and spiritual perspectives. Paper presented at the American Anthropological Association conference, Washington, DC, November.Google Scholar
  77. Rabinow P. (1996). Artificiality and enlightenment: From sociobiology to biosociality. In Essays on the Anthropology of Reason. Princeton, NJ: Princeton UP.Google Scholar
  78. Rapp R. (2000). Extra chromosomes and blue tulips: Medico-familial interpretations. In Lock M., Young A. & Cambrosio A. (Eds.), Living and working with the new medical technologies: Intersections of inquiry, 184–207. Cambridge: Cambridge UP.CrossRefGoogle Scholar
  79. Rapp R., & Ginsburg F. (2001). Enabling disability: Rewriting kinship, reimagining citizenship. Public Culture, 13, 533–556.CrossRefGoogle Scholar
  80. Rose N., & Novas C. (2003). Biological citizenship. In Ong A. & Collier S. (Eds.), Global anthropology. Blackwell. URL (accessed June 2008): www.lse.ac.uk/collections/sociology/pdf/RoseandNovasBiologicalCitizenship2002.pdfGoogle Scholar
  81. Ruble L.A., & Dalrymple N.J. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11, 3–15.CrossRefGoogle Scholar
  82. Rutter M. (2005). Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatrica, 94, 2–15.CrossRefGoogle Scholar
  83. Sacks O. (1995). An anthropologist on Mars: Seven paradoxical tales. New York: Vintage.Google Scholar
  84. Sanders J.S. (1996). Autism at the Orthogenic School and in the field at large (1951–1985). Residential Treatment for Children & Youth, 14, 1–19.CrossRefGoogle Scholar
  85. Savarese R.J. (2007). Reasonable people: A memoir of autism and adoption – On the meaning of family and the politics of neurological difference. Other Press.Google Scholar
  86. Senier L. (2008). ‘It's your most precious thing’: Worst-case thinking, trust, and parental decison-making about vaccinations. Sociological Inquiry, 28, 207–229.CrossRefGoogle Scholar
  87. Shaked M. (2005). The social trajectory of illness: Autism in the ultraorthodox community in Israel. Social Science and Medicine, 61, 2190–2230.CrossRefGoogle Scholar
  88. Shaked M., & Bilu Y. (2006). Grappling with affliction: Autism in the Jewish ultraorthodox community in Israel. Culture, Medicine and Psychiatry, 30, 1–27.CrossRefGoogle Scholar
  89. Silverman C. (2008). Brains, pedigrees, and promises: Lessons from the politics of autism genetics. In Gibbon S., & Novas C. (Eds.), Biosocialities, genetics and the social sciences: Making biologies and identities, 38–55. London: Routledge.Google Scholar
  90. Silverman C., & Brosco J.P. (2007). Understanding autism: Parents and pediatricians in historical perspective. Archives of Pediatrics and Adolescent Medicine, 161, 392–398.CrossRefGoogle Scholar
  91. Sinclair J. (1993). Don't mourn for us. First published in the Autism Network International newsletter, Our Voice, 1. URL (accessed December 2005): ani.autistics.org/dont_mourn.html
  92. Singh J., Hallmayer J., & Illes J. (2007). Interacting and paradoxical forces in neuroscience and society. Nature Reviews Neuroscience, 8, 153–160.CrossRefGoogle Scholar
  93. Sirota K.G. (2004). Positive politeness as discourse process: Politeness practices of high-functioning children with autism and Asperger Syndrome. Discourse Studies, 6, 229–251.CrossRefGoogle Scholar
  94. Solomon O. (2004). Narrative introductions: Discourse competence of children with autistic spectrum disorders. Discourse Studies, 6, 253–276.CrossRefGoogle Scholar
  95. Solomon O. (2007). Intersubjectivity as an interspecies phenomenon: Children with autism and therapy dogs in social interaction. Paper presented at the American Anthropological Association conference, Washington, DC, November.Google Scholar
  96. Sterponi L. (2004). Construction of rules, accountability and moral identity by high-functioning children with autism. Discourse Studies, 6, 207–228.CrossRefGoogle Scholar
  97. Talley H.L. (2005). Review essay: The curious incident of the disability in the night-time. Journal of Contemporary Ethnography, 34, 235–245.CrossRefGoogle Scholar
  98. Tinbergen N., & Tinbergen E.A. (1983). Autistic children: New hope for a cure. London: Allen & Unwin.Google Scholar
  99. Townson L., Macauley S., Harkness E., Dias J., Eardley M., & Chapman R. (2007). Research project on advocacy and autism, Disability & Society, 22, 523–536.CrossRefGoogle Scholar
  100. Welch M. (1988). Holding time: The breakthrough program for happy mothers and loving, self-confident children without tantrums, tugs-of-war, or sibling rivalry. New York: Simon & Schuster.Google Scholar
  101. Waltz M. (2005). Reading case studies of people with autism spectrum disorders: A cultural studies approach to issues of disability representation. Disability and Society, 20, 421–435.CrossRefGoogle Scholar
  102. Waltz M., & Shattock P. (2004). Autistic disorder in nineteenth-century London: Three case reports. Autism, 8, 7–20.CrossRefGoogle Scholar
  103. Waltz M. (2003). Metaphors of autism, and autism as a metaphor: An exploration of representation. URL (accessed May 2008): /mso/hid/hid2/hid03s11a.htm
  104. Wurzburg G. (dir.) (2005). Autism is a world (documentary film).Google Scholar

Copyright information

© London School of Economics and Political Science 2008

Authors and Affiliations

  • Chloe Silverman
    • 1
  1. 1.Penn State University, STS Program, 201Old Botany, University ParkUSA

Personalised recommendations