From Cure to Community: Transforming Notions of Autism
Abstract
For many decades, autism has been viewed as a biomedical condition, highlighting deficits in social interaction and communication. Based on ethnographic data from a study of adults with High Functioning Autism, this article explores the emergence of the autistic community, a group composed of people with autism, who are challenging these notions. First, I suggest that three historical trends can be linked to the emergence of this community: the widening of the autism spectrum, the strengthening of the self‐advocacy movement, and the explosion of technology. Drawing from ethnographic data, I describe the community, including its discourse, occupations or activities, and lexicon. Although the autistic community has grown over the past decade, it has also faced resistance from both inside and outside the group. I investigate this tension, arising in a debate regarding whether autism is a condition in need of a cure or a way of life and suggest that the autistic community has the power to transform notions of autism. Implications of this research for psychological anthropology's notions of sociality are introduced. [autism, community, social model of disability, occupation]
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The mismatch between what is currently being researched, what community members want from research and who gets to make these decisions may well be contributing to the growing distrust of mainstream autism science by the broader community.
“But the mismatch between what is currently being researched, what community members want from research and who gets to make these decisions may well be contributing to the growing distrust of mainstream autism science by the broader community (Bagatell, 2010; Dawson, 2004; Lory, 2019; Milton, 2012).”
From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Bagatell, 2010
Cites
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Mostert, M. P. (2001) · Journal of Autism and Developmental Disorders · doi:10.1023/a:1010795219886 · Cited by 175 · see citing works
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Which terms should be used to describe autism? Perspectives from the UK autism community
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016) · Autism · doi:10.1177/1362361315588200 · Cited by 1,941 · see citing works
Deficit, difference, or both? Autism and neurodiversity.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013) · Developmental Psychology · doi:10.1037/a0028353 · Cited by 1,263 · see citing works
Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science
Pellicano, E., & den Houting, J. (2022) · Journal of Child Psychology and Psychiatry · doi:10.1111/jcpp.13534 · Cited by 744 · see citing works
“But the mismatch between what is currently being researched, what community members want from research and who gets to make these decisions may well be contributing to the growing distrust of mainstream autism science by the broader community (Bagatell, 2010; Dawson, 2004; Lory, 2019; Milton, 2012).”
BackgroundWhat should autism research focus upon? Community views and priorities from the United Kingdom
Pellicano, E., Dinsmore, A., & Charman, T. (2014) · Autism · doi:10.1177/1362361314529627 · Cited by 800 · see citing works
“…that such an approach can not only be damaging to an individual’s self-worth but is also challenging because it views the difficulties that autistics face as straightforwardly emanating from their own ‘condition’, rather from the changeable nature of the world around them (e.g. Bagatell, 2010).”
BackgroundWhose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.00438 · Cited by 384 · see citing works
Gillespie-Lynch, K., Kapp, S. K., Shane-Simpson, C., Smith, D. S., & Hutman, T. (2014) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-52.6.456 · Cited by 182 · see citing works
Articulating Sensory Sensitivity: From Bodies with Autism to Autistic Bodies
Belek, B. (2019) · Medical Anthropology · doi:10.1080/01459740.2018.1460750 · Cited by 70 · see citing works
And I look down and he is gone: narrating autism, elopement and wandering in Los Angeles
Solomon, O., & Lawlor, M. C. (2013) · Social Science & Medicine · doi:10.1016/j.socscimed.2013.06.034 · Cited by 54 · see citing works
Gendron, M., Mesquita, B., & Barrett, L. F. (2020) · Culture, Mind, and Brain · doi:10.1017/9781108695374.010 · Cited by 20 · see citing works
Fabri, M., & Andrews, P. (2016) · INTED proceedings · doi:10.21125/inted.2016.1373 · Cited by 11 · see citing works
Mapping the Needs of Adults with Autism and Co-Morbid Intellectual Disability
van Dooren, K., McPherson, L., & Lennox, N. (2016) · Current Developmental Disorders Reports · doi:10.1007/s40474-016-0071-0 · Cited by 8 · see citing works
Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide
Rottier, H., & Gernsbacher, M. A. (2020) · Disability Alliances and Allies · doi:10.1108/s1479-354720200000012011 · Cited by 8 · see citing works
- Authors
- Bagatell, N.
- Affiliations
- Quinnipiac University (US)
- Corresponding author
- Bagatell, Nancy
- ORCID
- Bagatell, Nancy
- Venue
- Ethos
- Publisher
- Wiley
- Published
- 2010-03
- Volume
- 38
- Issue
- 1
- Pages
- 33-55
- ISSN
- 0091-2131 (ISSN-L)
- 1548-1352
- OpenAlex
- W2085448344
- Cited by
- 327
- References
- 3
- Citations by year
- 2026: 16 · 2025: 18 · 2024: 24 · 2023: 18 · 2022: 21 · 2021: 22 · 2020: 62 · 2019: 18 · 2018: 26 · 2017: 25 · 2016: 22 · 2015: 14 · 2014: 18 · 2013: 7 · 2012: 6
- FWCI
- 17.56
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Ethos (publishedVersion)
- Topics
- Social Sciences › Safety Research › Disability Rights and Representation
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, autistic community, high-functioning autism, autism discourse, social model of disability, sociality, psychological anthropology, autistic adults
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