Neurodiversity, the advocacy position that autism and related conditions are natural variants of human neurological outcomes that should be neither cured nor normalized, is based on the assertion that autistic people have unique neurological differences. Membership in this community as an autistic person largely results from clinical identification, or biocertification. However, there are many autistic individuals who diagnose themselves. This practice is contentious among autistic communities. Using data gathered from Wrong Planet, an online autism community forum, this article describes the debate about self-diagnosis amongst autistic self-advocates and argues for the acceptance of the practice in light of the difficulties in verifying autism as a ‘natural kind.’ This practice can counteract discriminatory practices towards and within the autistic community and also work to verfiy autistic self-knowledge and self-expertise. This discussion also has important implications for other neurocommunities, neuroethical issues such as identity and privacy, and the emerging field of critical autism studies.
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Autism Spectrum Disorder (ASD), or autism, is a developmental disability characterized by differences in communication, social behaviors, and self-management. It is highly variable in presentation; there is a wide range of expressions of all features of autism among autistic individuals.
Autistic self-advocates find autism to be central to identity formation and thus prefer to use the phrasing “autistic person” rather than “person with autism.” The latter phrasing reflects the well-known and oft preferred phrasing of people first language, which attempts to linguistically represent a person as more important than a disability by saying “person with schizophrenia” or “person with mobility impairments.” Although this phrasing is still often used in reference to other disabilities in the disability rights movement, autistic self-advocates reject this phrasing noting, again, the importance of autism on identity and that person-first language seems to reflect a need to remind others that autistic people are, in fact, people [6, 7]. In this article, I use language reflective of neurodiversity and so will be relying on the phrasing preferred among autistic self-advocates: ‘autistic people.’
Philosopher Ian Hacking discusses this model as it relates to the popular and widespread use of the puzzle piece as a symbol of autism hacking .
Ortega, Francisco. 2013. Cerebralizing autism within the neurodiversity movement. In Worlds of autism: Across the spectrum of neurological difference, ed. Joyce Davidson and Michael Orsini, 73–96. Minneapolis: University of Minnesota Press.
Vidal, Fernando. 2009. Brainhood, anthropological figure of modernity. History of the Human Sciences 22(1): 5–36. doi:10.1177/0952695108099133.
Abi-Rached, Joelle M. 2008. The implications of the new brain sciences. The ‘Decade of the Brain’ is over but its effects are now becoming visible as neuropolitics and neuroethics, and in the emergence of neuroeconomies. EMBO Reports 9(12): 1158–1162. doi:10.1038/embor.2008.211.
Ortega, Francisco. 2009. The cerebral subject and the challenge of neurodiversity. BioSocieties 4(4): 425–445.
Ortega, Francisco Javier Guerrero, and Fernando Vidal. 2007. Mapping the cerebral subject in contemporary culture. 1(2).
Jaarsma, Pier, and Stellan Welin. 2011. Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Health Care Analysis:1–11. doi:10.1007/s10728-011-0169-9.
Kapp, Steven K., Kristen Gillespie-Lynch, Lauren E. Sherman, and Ted Hutman. 2013. Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology 49(1): 59–71. doi:10.1037/a0028353.
Samuels, Ellen. 2014. Fantasies of identification: Disability, gender, race. New York: New York University Press.
Wrong Planet. 2015. Wrong Planet. http://wrongplanet.net/. Accessed July 15 2015.
Hacking, Ian. 1999. The social construction of what? Cambridge: Harvard University Press.
Hacking, Ian. 2012. Kinds of people: Moving targets: British Academy Lecture. In Proceedings of the British Academy, 2006 Lectures, ed. P.J. Marshall. Oxford: British Academy Scholarship Online.
Fricker, Miranda. 2007. Testimonial injustice. In Epistemic injustice: Power and the ethics of knowing, 9–17. Oxford: Oxford University Press.
Lai, M.C., M.V. Lombardo, B. Chakrabarti, and S. Baron-Cohen. 2013. Subgrouping the autism “spectrum”: Reflections on DSM-5. PLoS Biology 11(4): e1001544. doi:10.1371/journal.pbio.1001544.
Silberman, Steve. 2015. Neurotribes: The legacy of autism and the future of neurodiversity. New York: Avery.
Durkin, M.S., M. Elsabbagh, J. Barbaro, M. Gladstone, F. Happe, R.A. Hoekstra, L.C. Lee, et al. 2015. Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide. Autism Research 8(5): 473–476. doi:10.1002/aur.1575.
Garland-Thomson, Rosemarie. 2015. Human biodiversity conservation: A consensual ethical principle. American Journal of Bioethics 15(6): 13–15. doi:10.1080/15265161.2015.1028663.
Ouellette, Alicia. 2011. Bioethics and disability: Toward a disability-conscious bioethics. Cambridge: Cambridge University Press.
Kittay, Eva Feder, and Licia Carlson. 2010. Cognitive disability and its challenge to moral philosophy. New York: Wiley-Blackwell.
Longmore, Paul K. 2003. Why I burned my book and other essays on disability. Philadelphia: Temple University Press.
Nadesan, Majia Holmer. 2005. Constructing autism: Unravelling the ‘truth’ and understanding the social. London: Routledge.
Scully, Jackie Leach. 2008. Disability bioethics: Moral bodies, moral difference. Lanham: Rowman & Littlefield Publishers.
Sarrett, J.C. 2012. Autistic human rights - a proposal. Disability Studies Quarterly 32 (4).
Brownlow, Charlotte, and Lindsay O’Dell. 2013. Autism as a form of biological citizenship. In Worlds of autism: Across the spectrum of neurological difference, ed. Joyce Davidson and Michael Orsini, 97–114. Minneapolis: University of Minnesota Press.
Kopelowicz, Alex, Roberto Zarate, Veronica Gonzalez, Steven R. Lopez, Paula Ortega, Nora Obregon, and Jim Mintz. 2002. Evaluation of expressed emotion in schizophrenia: a comparison of Caucasians and Mexican-Americans. Schizophrenia Research 55(1–2): 179–186.
Linton, Simi. 1998. Claiming disability: Knowledge and identity. New York: New York University Press.
Seibers, Tobin. 2008. Disability theory. Ann Arbor: The University of Michigan Press.
Shakespeare, Thomas. 2002. The social model of disability: An outdated ideology? Research in Social Science and Disability 2: 9–28.
Lewis, Bradley. 2010. A mad fight: Psychiatry and disability activism. In The disability studies reader, ed. Davis Lennard. New York: Routledge.
Rose, Nikolas, and Carlos Novas. 2005. Biological citizenship. In Global assemblages: Technology, politics, and ethics as anthropological problems, ed. Aihwa Ong and Stephen J. Collier, 439–463. Malden: Blackwell Publishing.
Baggs, A.M., P. Schwarz, J. Smith, and L. Tisonick. Who can call themselves autistic? http://archive.autistics.org/library/whoisautistic.html. Accessed July 18 2015.
Garland-Thomson, Rosemarie. 2001. Seeing the disabled: Visual rhetorics of disability in popular photography. In The new disability history: American perspectives, ed. Paul K. Longmore and Lauri Umansky. New York: New York University Press.
Murray, Stuart. 2008. Representing autism: Culture, narrative, fascination. Liverpool: Liverpool University Press.
Forbes Magazine. 2013. ‘Wall street’ actress Daryl Hannah is an autistic woman. Sept. 29, 2013.
Aykroyd, Dan. 2011. Comedian — and writer — Dan Aykroyd. In Fresh air, ed. Terry Gross. Philadelphia: National Public Radio.
Time Magazine. 2014. Jerry Seinfeld to Brian Williams: ‘I think i’m on the [autism] spectrum’. Nov. 7, 2014.
Time Magazine. 2014. Jerry Seinfled says he is not on the autism spectrum after all. November 20, 2014.
New York Magazine. 2014. Autism spectrum: Are you on it? May 12, 2014.
Crossley, Nick. 1998. R. D. Laing and the British anti-psychiatry movement: A socio–historical analysis. Social Science & Medicine 47(7): 877–889. doi:10.1016/S0277-9536(98)00147-6.
Roberts, Ron, and Theodor Itten. 2006. Laing and Szasz: Anti-psychiatry, capitalism, and therapy. The Psychoanalytic Review 93(5): 781–800. doi:10.1521/prev.2006.93.5.781.
Brownlow, Charlotte, and Lindsay O’Dell. 2006. Constructing an autistic identity: AS voices online. Mental Retardation 44(5): 315–321. doi:10.1352/0047-6765(2006)44[315:CAAIAV]2.0.CO;2.
Harper, Ian, and Parvathi Raman. 2008. Less than human? Diaspora, disease and the question of citizenship. International Migration 46(5): 3–26. doi:10.1111/j.1468-2435.2008.00486.x.
Hendricks, Dawn. 2010. Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation 32: 125–134. doi:10.3233/JVR-2010-0502.
Hurlbutt, Karen, and Lynne Chalmers. 2004. Employment and adults with asperger syndrome. Focus on Autism and Other Developmental Disabilities 19(4): 215–222. doi:10.1177/10883576040190040301.
Chakravartty, Anjan. 2010. A metaphysics for scientific realism: Knowing the unobservable. Cambridge: Cambridge University Press.
Racine, Eric, Ofek Bar-Ilan, and Judy Illes. 2005. fMRI in the public eye. Nature Review Neuroscience 6(2): 159–164. doi:http://www.nature.com/nrn/journal/v6/n2/suppinfo/nrn1609_S1.html.
Frances, Allen. 2014. Saving normal: An insider’s revolt against out-of-control psychiatric diagnosis, DSM-5, Big Pharma, and the medicalization of ordinary life. New York: HarperCollins Publishing.
O’Connor, Cliodhna, and Helene Joffe. 2013. How has neuroscience affected lay understandings of personhood? A review of the evidence. Public Understanding of Science 22(3): 254–268. doi:10.1177/0963662513476812.
Farah, Martha. 2010. Brain reading. In Neuroethics: An introduction with readings, ed. Martha Farah, 137–146. Cambridge: The MIT Press.
Lennox, Belinda R. 2009. The clinical experience and potential of brain imaging in patients with mental illness. Frontiers in Human Neuroscience. doi:10.3389/neuro.09.046.2009.
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. doi:10.1007/s11013-014-9377-8.
Davidson, Joyce, and Michael Orsini. 2013. Worlds of autism: Across the spectrum of neurological difference. Minneapolis: Minnesota University Press.
Hacking, Ian. 2009. Autistic autobiography. vol. 1522.
I would like to thank Julia Bascom for taking the time to read and provide helpful comments on this article.
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Sarrett, J.C. Biocertification and Neurodiversity: the Role and Implications of Self-Diagnosis in Autistic Communities. Neuroethics 9, 23–36 (2016). https://doi.org/10.1007/s12152-016-9247-x
- Autism spectrum disorder
- Scientific realism
- Online communities