Neurodiversity

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Neurodiversity is an approach to learning and disability that suggests that diverse neurological conditions appear as a result of normal variations in the human genome.[citation needed][original research?] This term was coined in the late 1990s as a challenge to prevailing views of neurological diversity as inherently pathological, and it asserts that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.

Neurodiversity is also an international online disability rights movement that has been promoted primarily by the autistic self-advocate community (although other disability rights groups have joined the neurodiversity movement). This movement frames neurodiversity as a natural human variation rather than a disease, and its advocates reject the idea that neurological differences need to be (or can be) cured, as they believe them to be authentic forms of human diversity, self-expression, and being. These advocates promote support systems (such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support)[1] that allow those who are neurologically diverse to live their lives as they are, rather than being coerced or forced to adopt uncritically accepted ideas of normalcy, or to conform to a clinical ideal.[2]

Terminology

From the National Symposium on Neurodiversity held at Syracuse University, neurodiversity is:

... a concept where neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.[2]

According to Pier Jaarsma, neurodiversity is a "controversial concept" that "regards atypical neurological development as a normal human difference".[3]

Nick Walker says there is no such thing as a "neurodiverse individual", because the concept of neurodiversity encompasses all people of every neurological status, and that all people are neurodiverse. Walker instead proposes the term neurominority as "a good, non-pathologizing word for referring to all people who aren't neurotypical". He says that people with other neurological styles (not only autistic people) are also "marginalized and poorly accommodated by the dominant culture".[4] Walker proposes making a distinction between neurodiversity as an overarching concept, and the neurodiversity paradigm, or "the understanding of neurodiversity as a natural form of human diversity subject to the same societal dynamics as other forms of diversity",[4] which is contrasted to the pathology paradigm of representing neurominorities as problematic and pathological solely due to their deviance from the neurotypical majority.

Advocacy

A 2013 online survey said: "Such a deficit-as-difference conception of autism suggests the importance of harnessing autistic traits in developmentally beneficial ways, transcending a false dichotomy between celebrating differences and ameliorating deficit".[5]

According to Andrew Fenton and Tim Krahn, proponents of neurodiversity strive to reconceptualize autism and related conditions in society by:[6]

  • acknowledging that neurodiversity does not require a cure
  • changing the language from the current "condition, disease, disorder, or illness"-based nomenclature
  • "broaden[ing] the understanding of healthy or independent living"; acknowledging new types of autonomy
  • giving neurodiverse individuals more control over their treatment, including the type, timing, and whether there should be treatment at all.[6]

A 2009 study[7] by Edward Griffin and David Pollak separated 27 students (with autism, dyslexia, developmental coordination disorder, ADHD, and stroke), into two categories of self-view: "a 'difference' view—where neurodiversity was seen as a difference incorporating a set of strengths and weaknesses, or a 'medical/deficit' view—where neurodiversity was seen as a disadvantageous medical condition". They found that although all of the students reported uniformly difficult schooling careers involving exclusion, abuse, and bullying, those who viewed themselves from a difference view (41% of the study cohort) "indicated higher academic self-esteem and confidence in their abilities and many (73%) expressed considerable career ambitions with positive and clear goals".[7] Many of these students reported gaining this view of themselves through contact with neurodiversity advocates in online support groups.[7]

Ari Ne'eman, president of the Washington DC-based Autistic Self Advocacy Network (ASAN) welcomed the news that two multinationals had strategies in place to "harness the unique talents of autistic people" while "giving people previously marginalized in the workforce a chance to flourish in a job".[citation needed][original research?] In 2013, German computer software giant SAP, seeking innovation that "comes from the edges", launched a recruitment drive for software testers specifically seeking people with autism. Freddie Mac, the U.S. home financing firm, aimed its hiring campaign's second round of paid internships at autistic students.[8]

Controversies

The neurodiversity concept is controversial.[3] Those proposing the medical model of disability identify learning differences as "disorders, deficits, and dysfunctions". From this point of view, some neurominority states are treated as medical conditions that can and should be corrected.[9] Author David Pollak sees neurodiversity as an inclusive term that refers to the equality of all possible mental states. Still others reject the word because they think it sounds too medical.[9]

Jaarsma and Welin wrote in 2011 that the "broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable."[3] They say that "higher functioning" individuals with autism may "not [be] benefited with such a psychiatric defect-based diagnosis ... some of them are being harmed by it, because of the disrespect the diagnosis displays for their natural way of being", but "think that it is still reasonable to include other categories of autism in the psychiatric diagnostics. The narrow conception of the neurodiversity claim should be accepted but the broader claim should not."[3]

History

According to Jaarsma and Welin (2011), the "neurodiversity movement was developed in the 1990s by online groups of autistic persons. It is now associated with the struggle for the civil rights of all those diagnosed with neurological or neurodevelopmental disorders."[3] The term neurodiversity also represents a move away from the "mother-blaming" or refrigerator mother theories of the 20th century.[10]

Biodiversity is a term that refers to the importance of variation in the natural world;[11] neurodiversity adds another area of variation to the concept of biodiversity.[citation needed][improper synthesis?][original research?] The neurodiversity concept was initially embraced by individuals on the autism spectrum,[3] but subsequent groups have applied the concept to conditions unrelated (or non-concomitant) to autism such as bipolar disorder, ADHD,[12] schizophrenia,[13] schizoaffective disorder, sociopathy,[14] circadian rhythm disorders, developmental speech disorders, Parkinson's disease, dyslexia, developmental coordination disorder, dyscalculia, dysnomia, OCD, and Tourette syndrome.[12][15]

The term is attributed to Judy Singer, an Australian social scientist on the autism spectrum,[3] and it first appeared in print in an article by journalist Harvey Blume (which did not attribute Singer)[16] in The Atlantic on September 30, 1998:[17]

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.[17]

In a New York Times piece on June 30, 1997, Blume did not use the term "neurodiversity", but he did describe the foundation of the idea in the phrase "neurological pluralism":[18]

"Yet, in trying to come to terms with an NT [neurotypical]-dominated world, autistics are neither willing nor able to give up their own customs. Instead, they are proposing a new social compact, one emphasizing neurological pluralism. ... The consensus emerging from the Internet forums and Web sites where autistics congregate [...] is that NT is only one of many neurological configurations -- the dominant one certainly, but not necessarily the best."[18]

Blume was an early advocate who predicted the role the Internet would play in fostering the international neurodiversity movement, writing:[19]

"There is a political dimension to this bond with the Internet. A project called CyberSpace 2000 is devoted to getting as many people as possible in the autistic spectrum hooked up by the year 2000, reason being that "the Internet is an essential means for autistic people to improve their lives, because it is often the only way they can communicate effectively. ... The challenge we will all be increasingly confronted with, on-line and off, is, to look at ourselves differently than we have before, that is, to accept neurological diversity."[19]

Some authors[6][16] also credit the earlier work of autistic advocate Jim Sinclair, who was a principal early organizer of the international online autism community. Sinclair's 1993 speech, "Don't Mourn For Us",[20] mentioned that some parents considered their child's autism diagnosis as "the most traumatic thing that ever happened to them". Sinclair (who did not speak until the age of 12) addressed the communal grief parents felt by asking them to try to take the perspectives of autistic people themselves:

Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have ... There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you'd have left would not be the same person you started with. This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.[20]

Sinclair is also credited with coining the word neurotypical in the early 1990s, which was originally used to denote people with non-autistic brains, but has morphed in usage to denote neurologically typically developing people (or the culture that is built around such people). Both Singer and Sinclair created new ways to view and frame people with neurological differences – first in regard to the autism spectrum but eventually in regard to other conditions as well.[citation needed][original research?]

The term neurodiversity has since been applied to other conditions and has taken on a more general meaning; for example, the Developmental Adult Neurodiversity Association (DANDA) in the UK encompasses developmental coordination disorder, ADHD, Asperger's syndrome and related conditions.[21] The term also gained broader exposure in a 2004 New York Times article by Amy Harmon, titled "Neurodiversity Forever; The Disability Movement Turns to Brains".[22]

See also

References

  1. ^ "Position Statements". Autistic Self Advocacy Network. Retrieved April 21, 2013.
  2. ^ a b "What is Neurodiversity?". National Symposium on Neurodiversity at Syracuse University. Retrieved October 2, 2012.
  3. ^ a b c d e f g Jaarsma P, Welin S (February 2011). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement" (PDF). Health Care Anal. 20 (1): 20–30. doi:10.1007/s10728-011-0169-9. PMID 21311979.
  4. ^ a b Walker, Nick (2012). Julia Bascom (ed.). Loud Hands: Autistic People, Speaking. Washington, DC: The Autistic Press. pp. 154–162. ISBN 9781938800023.
  5. ^ Kapp, Steven K. (January 2013). "Deficit, difference, or both? Autism and neurodiversity". Developmental Psychology. 49 (1): 59–71. doi:10.1037/a0028353. PMID 22545843. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)
  6. ^ a b c Fenton, Andrew, and Tim Krahn. "Autism, Neurodiversity and Equality Beyond the Normal" (PDF). Journal of Ethics in Mental Health 2.2 (2007): 1-6. 10 November 2009.
  7. ^ a b c Griffin, Edward (January 2009). "Student experiences of neurodiversity in higher education: Insights from the BRAINHE project". Dyslexia. 15 (1): 23–41. doi:10.1002/dys.383. PMID 19140120. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)
  8. ^ Kelland, Kate (4 June 2013). "Thinking differently: Autism finds space in the workplace". London, UK: Reuters. Retrieved 4 June 2013.
  9. ^ a b Pollak, David. 2009. "Neurodiversity in Higher Education." John Wiley & Sons, Ltd.
  10. ^ Bumiller, Kristen. "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy." Signs 34.4 (2009): 875-99. Chicago Journals. University of Chicago Press.
  11. ^ Baker, Dana Lee (2011). The Politics of Neurodiversity: Why Public Policy Matters. Lynne Rienner Publishers. ISBN 978-1-58826-754-2. {{cite book}}: |access-date= requires |url= (help)
  12. ^ a b Woodford, Gillian. 'We Don't Need to be Cured' Autistics Say. National Review of Medicine. Volume 3. No. 8. April 30, 2006. Retrieved February 23, 2008.
  13. ^ Morrice, Polly (January 29, 2006) "Otherwise Minded" The New York Times, review of A Mind Apart: Travels in a Neurodiverse World
  14. ^ Thomas, M. E. (March 10, 2014) "Neurodiversity = all inclusive?", Sociopath World. Retrieved May 17th, 2014.
  15. ^ Mackenzie, Robin (2011-01-31). "Is our legal, health care and social support infrastructure neurodiverse enough? How far are the aims of the neurodiversity movement fulfilled for those diagnosed with cognitive disability and learning disability?". Tizard Learning Disability Review. 16 (1). Pier Professional: 30–37. doi:10.5042/tldr.2011.0005. We recommend, therefore, that the term neurodiverse include the conditions ASD, ADHD, OCD, language disorders, developmental coordination disorder, dyslexia and Tourette's syndrome. {{cite journal}}: |access-date= requires |url= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  16. ^ a b Solomon, Andrew (May 25, 2008). "The Autism Rights Movement". New York Magazine. Retrieved June 28, 2008.
  17. ^ a b Blume, Harvey (September 30, 1998). "Neurodiversity". The Atlantic. Retrieved November 7, 2007.
  18. ^ a b Blume, Harvey (June 30, 1997). "Autistics, freed from face-to-face encounters, are communicating in cyberspace". The New York Times. Retrieved November 8, 2007.
  19. ^ a b Blume, Harvey (July 1, 1997). ""Autism & The Internet" or "It's The Wiring, Stupid"". Media In Transition, Massachusetts Institute of Technology. Retrieved November 8, 2007.
  20. ^ a b Sinclair, Jim. Don't Mourn For Us. Autism Network International, n.d.. Retrieved on 2013-05-07.
  21. ^ Home page. DANDA. Retrieved on 2007-11-08
  22. ^ Harmon, Amy. Neurodiversity Forever; The Disability Movement Turns to Brains. The New York Times, May 9, 2004. Retrieved on 2007-11-08.

Further reading

  • Armstrong, Thomas (2010). Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences. Boston, MA: Da Capo Lifelong. p. 288. ISBN 978-0738213545.
  • Armstrong, Thomas (2012). Neurodiversity in the Classroom: Strength-Based Strategies to Help Students with Special Needs Succeed in School and Life. Alexandria, VA: Association for Supervision & Curriculum Development. p. 188. ISBN 978-1416614838.
  • Silberman, Steve. "Neurodiversity Rewires Conventional Thinking About Brains". Wired. Retrieved 7 May 2013.

External links

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