Hostname: page-component-586b7cd67f-t8hqh Total loading time: 0 Render date: 2024-11-27T14:32:19.112Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  01 September 2008

Chloe Silverman
Chloe Silverman
Affiliation:
Penn State University, STS Program, 201 Old Botany, University Park, PA 16802USA E-mail: [email protected]
Get access

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 DisordersDisabilityNeurodiversitySocial Science
Type
Critical Review
Information
BioSocieties , Volume 3 , Issue 3 , September 2008 , pp. 325 - 341
Copyright
Copyright © London School of Economics and Political Science 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Psychiatric Association . (2000). Diagnostic and statistical manual of mental disorders, DSM-IVTR. Arlington, VA: American Psychiatric Association.Google Scholar
American Psychological Association (1994). Facilitated communication. URL (accessed March 2008): www.apa.org/about/division/cpmscientific.html#5Google Scholar
Asperger, H. (1991/1944). ‘Autistic psychopathy’ in childhood. In Frith, U. (Ed.), Autism and Asperger Syndrome, 37–92. Cambridge: Cambridge UP.Google Scholar
Bagatell, N. (2007). Orchestrating voices: autism, identity and the power of discourse. Disability and Society, 22, 413–426.CrossRefGoogle Scholar
Baggs, A. (2007). In my own language. URL (accessed May 2008): www.youtube.com/watch?v=JnylM1hI2jcGoogle Scholar
Baker, D.L. (2006). Neurodiversity, neurological disability, and the public sector: notes on the autism spectrum. Disability and Society,21, 15–29.Google Scholar
Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press.CrossRefGoogle Scholar
Baron-Cohen, S. (2003). The essential difference: The truth about the male and female brain. New York: Basic Books.Google Scholar
Baron-Cohen, S., Leslie, A.M., & Frith, U. (1985). Does the autistic child have a ‘theory of mind’? Cognition,21, 37–46.CrossRefGoogle ScholarPubMed
Baron-Cohen, S., Tager-Flusberg, H., & Cohen, D.J. (Eds.) (1993). Understanding other minds: Perspectives from autism. Oxford: Oxford UP.Google Scholar
Belmonte, M.K. (2008). Does the experimental scientist have a ‘theory of mind’? Review of General Psychology, 12, 192–204.CrossRefGoogle Scholar
Bettelheim, B. (1959). Joey: A mechanical boy. Scientific American, 200(3), 116–120.CrossRefGoogle ScholarPubMed
Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. New York: The Free Press.Google Scholar
Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314.Google Scholar
Biklen, D. (2005). Autism and the myth of the person alone. New York: NYU Press.Google Scholar
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.Google Scholar
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
Brownlow, C., & O’Dell, L. (2006). Constructing an autistic identity: AS voices online. Mental Retardation, 44, 315–321.CrossRefGoogle ScholarPubMed
Chamak, B. (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organizations.Sociology of Health & Illness, 30, 76–96.Google Scholar
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 ScholarPubMed
Cohen, L.H. (1995). Train go sorry: Inside a deaf world. New York: Vintage.Google Scholar
Daley, T. (2002a). The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry, 39, 531–550.Google Scholar
Daley, T. (2002b). Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders, 32, 13–23.Google Scholar
Daley, T. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58, 1323–1335.CrossRefGoogle ScholarPubMed
Dawson, G. et al. (2002). Defining the broader phenotype of autism: Genetic, brain, and behavioral perspectives. Development and Psychopathology, 14, 581–611.CrossRefGoogle ScholarPubMed
Dawson, M. (2004). The misbehaviour of behaviourists. URL (accessed May 2008): www.sentex.net/~nexus23/naa_aba.htmlGoogle Scholar
Dawson, M., Soulieres, I., Gernsbacher, M.A., & Mottron, L. (2007). The level and nature of autistic intelligence. Psychological Science, 18, 657–662.CrossRefGoogle ScholarPubMed
Dekker, M. (2000). On our own terms: Emerging autistic culture. URL (accessed April 2008): http://autisticculture.com/index.php?page=articlesGoogle Scholar
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
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
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 ScholarPubMed
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.Google Scholar
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
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 ScholarPubMed
Gernsbacher, M.A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 138–152.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Grandin, T. (1995). Thinking in pictures: And other reports from my life with autism. New York: Vintage.Google Scholar
Grandin, T. (1986). Emergence: Labeled autistic. New York: Warner Books.Google Scholar
Gray, D.E. (2001). Accommodation, resistance and transcendence: three narratives of autism. Social Science & Medicine, 53, 1247–1257.Google Scholar
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
Gray, D.E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56, 631–642.CrossRefGoogle ScholarPubMed
Grinker, R.R. (2008). Unstrange minds: Remapping the world of autism. New York: Basic Books.Google Scholar
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_.htmlGoogle Scholar
Hacking, I. (1999). Making up people. In Biagioli, M. (Ed.), The science studies reader. New York: Routledge.Google Scholar
Haddon, M. (2003). The curious incident of the dog in the night-time. New York: Random House.Google Scholar
Happe, F., Ronald, A., & Plomin, R. (2006). Time to give up on a single explanation for autism. Nature Neuroscience, 9, 1218–1220.Google Scholar
Henry, J. (1971). Pathways to madness. New York: Random House.Google Scholar
Herbert, M. (2005). Autism: A brain disorder or a disorder that affects the brain? Clinical Neuropsychiatry, 2, 354–379.Google Scholar
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.Google Scholar
Hornig, M., Chian, D., & Lipkin, W.I.(2004). Neurotoxic effects of postnatal thimerosal are mouse strain dependent. Molecular Psychiatry, 9, 833–845.CrossRefGoogle ScholarPubMed
Houston, R., & Frith, U. (2000). Autism in history: The case of Hugh Blair of Borgue. Cambridge: Blackwell.Google Scholar
Howlin, P., & Jones, D.P.H.(1996). An assessment approach to abuse allegations made through facilitated communication. Child Abuse and Neglect, 20, 103–110.Google Scholar
Iverson, P. (2007). Strange son: Two mothers, two sons, and the quest to unlock the hidden world of autism. Riverhead Trade.Google Scholar
Jurecic, A. (2007). Neurodiversity. College English, 69, 421–442.Google Scholar
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–50.Google Scholar
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
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 ScholarPubMed
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.Google Scholar
Landsman, G. (2005). Mothers and models of disability. Journal of Medical Humanities, 26, 121–139.Google Scholar
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.Google Scholar
Maurice, C. (1993). Let me hear your voice: A family’s triumph over autism. New York: Ballantine Books.Google Scholar
Miller, J.K. (Ed.) (2003). Women from another planet? Our lives in the universe of autism. Bloomington, IN: 1st Books Library.Google Scholar
Moon, E. (2003). The speed of dark. Ballantine Books.Google Scholar
Mostert, M.P. (2001). Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31, 287–312.CrossRefGoogle ScholarPubMed
Nadesan, M. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the social. New York: Routledge.Google Scholar
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
Nussbaum, M.C. (2006). Frontiers of personhood: Disability, nationality, species membership. Cambridge, MA: Belknap Press.Google Scholar
Ochs, E., & Solomon, O. (2004). Introduction: Discourse and autism. Discourse Studies, 6, 139–146.CrossRefGoogle Scholar
Ochs, E., Kremer-Sadlik, T., Solomon, O., & Sirota, K. (2001). Inclusion as social practice: Views of children with autism. Social Development, 10, 399–419.Google Scholar
Ochs, E., Kremer-Sadlik, T., Sirota, K.G., & Solomon, O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6, 147–183.Google Scholar
Osborne, L. (2002). American normal: The hidden world of Asperger Syndrome. New York: Copernicus Books.Google Scholar
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
Prince-Hughes, D. (2004). Songs of the gorilla nation: My journey through autism. New York: Harmony Books.Google Scholar
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
Rabinow, P. (1996). Artificiality and enlightenment: From sociobiology to biosociality. In Essays on the Anthropology of Reason. Princeton, NJ: Princeton UP.Google Scholar
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.Google Scholar
Rapp, R., & Ginsburg, F.(2001). Enabling disability: Rewriting kinship, reimagining citizenship. Public Culture, 13, 533–556.Google Scholar
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
Ruble, L.A., & Dalrymple, N.J. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11, 3–15.Google Scholar
Rutter, M. (2005). Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatrica, 94, 2–15.CrossRefGoogle ScholarPubMed
Sacks, O. (1995). An anthropologist on Mars: Seven paradoxical tales. New York: Vintage.Google Scholar
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
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
Senier, L. (2008). ‘It’s your most precious thing’: Worst-case thinking, trust, and parental decison-making about vaccinations. Sociological Inquiry, 28, 207–229.Google Scholar
Shaked, M. (2005). The social trajectory of illness: Autism in the ultraorthodox community in Israel. Social Science and Medicine, 61, 2190–2230.Google Scholar
Shaked, M., & Bilu, Y. (2006). Grappling with affliction: Autism in the Jewish ultraorthodox community in Israel. Culture, Medicine and Psychiatry, 30, 1–27.CrossRefGoogle ScholarPubMed
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
Silverman, C., & Brosco, J.P.(2007). Understanding autism: Parents and pediatricians in historical perspective. Archives of Pediatrics and Adolescent Medicine, 161, 392–398.Google Scholar
Sinclair, J. (1993). Don’t mourn for us. First published in the Autism Network International newsletter, Our Voice, 1. URL (accessed December 2005): http://ani.autistics.org/dont_mourn.htmlGoogle Scholar
Singh, J., Hallmayer, J., & Illes, J. (2007). Interacting and paradoxical forces in neuroscience and society. Nature Reviews Neuroscience, 8, 153–160.Google Scholar
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.Google Scholar
Solomon, O. (2004). Narrative introductions: Discourse competence of children with autistic spectrum disorders. Discourse Studies, 6, 253–276.Google Scholar
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
Sterponi, L. (2004). Construction of rules, accountability and moral identity by high-functioning children with autism. Discourse Studies, 6, 207–228.Google Scholar
Talley, H.L. (2005). Review essay: The curious incident of the disability in the night-time. Journal of Contemporary Ethnography, 34, 235–245.Google Scholar
Tinbergen, N., & Tinbergen, E.A. (1983). Autistic children: New hope for a cure. London: Allen & Unwin.Google Scholar
Townson, L., Macauley, S., Harkness, E., Dias, J., Eardley, M., & Chapman, R. (2007). Research project on advocacy and autism, Disability & Society, 22, 523–536.Google Scholar
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
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
Waltz, M., & Shattock, P.(2004). Autistic disorder in nineteenth-century London: Three case reports. Autism, 8, 7–20.Google Scholar
Waltz, M. (2003). Metaphors of autism, and autism as a metaphor: An exploration of representation. URL (accessed May 2008): www.inter-disciplinary.net/mso/hid/hid2/hid03s11a.htmGoogle Scholar
Wurzburg, G. (dir.) (2005). Autism is a world (documentary film).Google Scholar