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The Cerebral Subject and the Challenge of Neurodiversity

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Abstract

The neurodiversity movement has so far been dominated by autistic people who believe their condition is not a disease to be treated and, if possible, cured, but rather a human specificity (like sex or race) that must be equally respected. Autistic self-advocates largely oppose groups of parents of autistic children and professionals searching for a cure for autism. This article discusses the positions of the pro-cure and anti-cure groups. It also addresses the emergence of autistic cultures and various issues concerning autistic identities. It shows how identity issues are frequently linked to a ‘neurological self-awareness’ and a rejection of psychological interpretations. It argues that the preference for cerebral explanations cannot be reduced to an aversion to psychoanalysis or psychological culture. Instead, such preference must be understood within the context of the diffusion of neuroscientific claims beyond the laboratory and their penetration in different domains of life in contemporary biomedicalized societies. Within this framework, neuroscientific theories, practices, technologies and therapies are influencing the ways we think about ourselves and relate to others, favoring forms of neurological or cerebral subjectivation. The article shows how neuroscientific claims are taken up in the formation of identities, as well as social and community networks.

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Notes

  1. 1 Muskie, creator of the Institute for the Study of the Neurologically Typical website, http://isnt.autistics.org

  2. 2 Dedication of Susanne Antonetta's book, A mind apart: Travels in a neurodiverse world (2005).

  3. 3 See URL: http://www.autism-society.org

  4. 4 See Dekker (2006), Wing (1997) and Shapiro (2006); see also the entry, ‘Autism Rights Movement’ in Wikipedia at http://en.wikipedia.org/wiki/Autism_rights_movement

  5. 5 The use of ‘person-first language’ generally supported by the disability rights movement is not always well seen by autism self-advocacy groups for whom the expression ‘a person with autism’ suggests that the ‘condition can be separated from the person’ (Sinclair, 1999). That is why, when referring to self-advocacy movements, I will use the terms ‘autistic’ or ‘autistic person’. See also Hacking (2009).

  6. 6 See URL: http://www.naar.org/naar.asp; http://www.cureautismnow.org; see also http://en.wikipedia.org/wiki/Cure_Autism_Now

  7. 7 See URL: http://www.autismspeaks.org/index.php

  8. 8 See URL: http://everything2.com/title/neurotypical

  9. 9 To better understand the debate and the positions at play, see Chamak (2008), Clarke and van Amerom (2007, 2008), Silverman (2008a, 2008b) and the entry ‘Autism Rights Movement’ in Wikipedia.

  10. 10 ABA applies learning theory to improve ‘socially significant behaviors.’ It aims to promote the development of adaptive, pro-social conduct. See http://www.centerforautism.com/aba/whatisaba.asp

  11. 11 Consequently, some self-advocates made a petition to the United Nations in 2004, asking to be recognized as a ‘minority social group’ deserving protection against ‘discrimination’ and ‘inhuman treatment’ (Nelson, 2004).

  12. 12 See URL: http://www.neurodiversity.com

  13. 13 See URL: http://www.taaproject.com

  14. 14 See for instance the Natural Variation—Autism blog (http://autismnaturalvariation.blogspot.com). There is a very interesting discussion on this blog, on the 3 March 2009 post, about the differences between autistics who approve and disapprove of neurodiversity. The discussion was launched by the published report entitled ‘Neurodiversity in higher education: Insights from qualitative research’ by the BRAINHE project (Best Resources for Achievement and Intervention re Neurodiversity in Higher Education), a National Teaching Fellowship Scheme project funded by the Higher Education Academy in the UK (www.brainhe.com).

  15. 15 In his homepage, Mitchell presents himself as being ‘pro-cure, anti-neurodiversity, anti-special ed, anti-ABA’, and he adds, ‘I have something to piss off everybody! Therefore you can call me autism's gadfly!’ (http://www.jonathans-stories.com).

  16. 16 I am grateful to the anonymous referee that called my attention to this important distinction.

  17. 17 See http://en.wikipedia.org/wiki/Neurodiversity. Among the best-known and most vocal groups are http://www.neurodiversity.com and www.aspiesforfreedom.com, but groups and websites are multiplying in different countries and manifest various positions and national differences.

  18. 18 Amanda Baggs, who speaks through a voice syntheziser, became one of the best-known autism self-advocates after posting her video ‘In my language’, in January 2007, (http://www.youtube.com/watch?v=JnylM1hI2jc). There is a growing controversy as to whether Baggs is really a person with autism and if she really made the video herself. See among others http://amandabaggscontroversy.blogspot.com/2009/07/amanda-baggs-controversy.html

  19. 19 See URL: http://isnt.autistics.org

  20. 20 Padden and Humphries (2006); see URL: http://www.wrongplanet.net and www.autisticculture.com for particularly interesting and informative websites.

  21. 21 See the entry, ‘Autistic Pride Day’ at Wikipedia: http://en.wikipedia.org/wiki/Autistic_Pride_Day

  22. 22 A female diagnosed with autism testified that, after spending her teens ‘in a state of suicidal clinical depression as a result of bullying and feeling that I must be a failure or insane for being different’, she found this opinion ‘only reinforced by the psychotherapist I got sent to, who decided that all my problems must be the result of “sexual repression”’. Proud to have ‘walked out after six sessions’, she sees being diagnosed as an autistic as ‘the best thing’ that ever happened to her (quoted in Blume, 1997a).

  23. 23 See URL: www.agre.org

  24. 24 See URL: www.generationrescue.org

  25. 25 See Brownlow (2007), Brownlow and O'Dell (2006), Clarke and van Amerom (2007, 2008), Davidson (2008), Jones and Meldal (2001), Jones et al. (2001).

  26. 26 http://welkowitz.typepad.com

  27. 27 http://www.council-of-elrond.com/forums/showthread.php?t=7374

  28. 28 http://www.aspiesforfreedom.com/archive/index.php/thread-11062.html

  29. 29 http://dannimatzk.co.uk (emphases added).

  30. 30 http://autism.change.org/blog/view/identity_politics_and_the_language_controversy (emphasis added).

  31. 31 http://www.aspiesforfreedom.com/showthread.php?tid=11062.

  32. 32 ‘Snippet’ from Jane Meyerding's website, http://mjane.zolaweb.com/snipframe.html

  33. 33 http://www.aspiesforfreedom.com/showthread.php?tid=11062

  34. 34 http://everything2.com/title/neurotypical

  35. 35 See Metzinger (2009: 213); I am grateful to Nicolas Langlitz for calling my attention to this reference.

  36. 36 Whereas the radicalism of some self-advocates in the US, Canada and Australia seems to be walking toward the ‘dark side’ of identity politics by essentializing neurological uniqueness and typologizing brain difference, this does not seem to be the case in countries like France or Brazil.

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Acknowledgements

I would like to thank Pietro Barbetta, Suparna Choudhury, Nicolas Langlitz, Enrico Valtellina, Fernando Vidal and Rafaela Zorzanelli. This article was partly researched and written at the Max Planck Institute for the History of Science in Berlin, which I thank for its hospitality and support. Project website: www.brainhood.net

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    Francisco Ortega

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Ortega, F. The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties 4, 425–445 (2009). https://doi.org/10.1017/S1745855209990287

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