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Neurodiversity

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Autism rainbow infinity
The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.

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[1]. 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.

There is also a neurodiversity movement, which is an international civil rights movement that has the Autism rights movement as its most influential submovement. This movement frames Autism, Bipolar disorder and other minority neurotypes as a natural human variation rather than a pathology or disorder, 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. In doing so, they follow the example of the LGBT social movements that has been succesful in challenging the notion that homosexuality is a mental disorder.

Neurodiversity advocates promote support systems (such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support)[2] 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.[3]

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.[3]

According to Pier Jaarsma, neurodiversity is a "controversial concept" that "regards atypical neurological development as a normal human difference".[4]

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 are "marginalized and poorly accommodated by the dominant culture".[5] 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",[5] which is contrasted to the pathology paradigm of representing neurominorities as problematic and pathological solely due to their deviance from the neurotypical majority.

Autism rights movement

Further information: Autism rights movement

The autism rights movement (ARM) is a social movement within the neurodiversity movement that encourages autistic people, their caregivers and society to adopt a position of neurodiversity, accepting autism as a variation in functioning rather than a mental disorder to be cured.[6] The ARM advocates a variety of goals including a greater acceptance of autistic behaviors;[7] therapies that teach autistic individuals coping skills rather than therapies focused on imitating behaviors of neurotypical peers;[8] the creation of social networks and events that allow autistic people to socialize on their own terms;[9] and the recognition of the Autistic community as a minority group.[10]

Autism rights or neurodiversity advocates believe that the autism spectrum is genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two other likewise distinct views: (1) the mainstream perspective that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s) and (2) the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes.[6]

Anti-cure perspective

"Curing" or "treating" autism is a controversial and politicized issue. Doctors and scientists are not sure of the cause(s) of autism yet many organizations like Autism Research Institute and Autism Speaks advocate researching a cure. Members of the various autism rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.[11] Some advocates believe that common therapies for the behavioral and language differences associated with autism, like applied behavior analysis, are not only misguided but also unethical.[12]

The "anti-cure perspective" endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.[11] Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated.[11][13] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated and that efforts to eliminate autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.[11][14] The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability.[15] Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.

John Elder Robison was a discussant for the Autism Social, Legal, and Ethical Research Special Interest Group at the 2014 International Meeting for Autism Research (IMFAR). He ended up taking the group to task, stating that the autism science community is headed for disaster if it does not change course on several factors – and noting for context the larger size of the US autistic community in proportion to other minority groups such as Jewish or Native American communities.

Robison asserted that autistic people need to be the ones providing oversight and governance for autism research. He condemned the use of words like “cure.” He pointed out that researchers’ explicit or implicit efforts to eradicate autistic people is a formula for disaster and needs to stop. And he affirmed that memoirs and narratives written by autistic people are more trustworthy than writing about autism by nonautistics.[16]

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".[17]

According to Andrew Fenton and Tim Krahn, proponents of neurodiversity strive to reconceptualize autism and related conditions in society by:[18]

  • 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.[18]

A 2009 study[19] 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".[19] Many of these students reported gaining this view of themselves through contact with neurodiversity advocates in online support groups.[19]

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.[20]

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."[4] The term neurodiversity also represents a move away from the "mother-blaming" or refrigerator mother theories of the 20th century.[21]

Biodiversity is a term that refers to the importance of variation in the natural world;[22] 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,[4] but subsequent groups have applied the concept to conditions unrelated (or non-concomitant) to autism such as bipolar disorder, ADHD,[23] schizophrenia,[24] schizoaffective disorder, sociopathy,[25] circadian rhythm disorders, developmental speech disorders, Parkinson's disease, dyslexia, developmental coordination disorder, dyscalculia, dysnomia, OCD, and Tourette syndrome.[23][26]

The term is attributed to Judy Singer, an Australian social scientist on the autism spectrum,[4] and it first appeared in print in an article by journalist Harvey Blume (which did not attribute Singer)[6] in The Atlantic on September 30, 1998:[27]

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.[27]

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":[28]

"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."[28]

Blume was an early advocate who predicted the role the Internet would play in fostering the international neurodiversity movement, writing:[29]

"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."[29]

Some authors[18][6] 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",[30] 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.[30]

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.[31] 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".[11]

The Holist Manifesto

Brain.HE is a non-commercial/non-profit-making resource website for students and staff in higher education. They are hosted by the London School of Economics' Neurodiversity Team and are supported by the LSE Annual Fund.[32] BRAIN.HE supports a manifesto for neurodiversity that's known as the holist manifesto and is based on principles of the social model of disability and neurodiversity. It is also underpinned by two realisations that were first articulated in the work of Dr Ross Cooper, a former lecturer at South Bank University[33]

The first is that all people with specific learning ‘difficulties’ have two things in common: a strong need to process information holistically for them to be meaningful and difficulties with working memory. The second realisation is that apparent ‘difficulties’ with working memory are a product of a strong need to process information holistically, since unlike sequential processing, holistic processing requires imagination rather than working memory. This then makes holistic learners vulnerable to the charge of appearing to have ‘difficulties’ with any process which requires working memory.

Principles

  1. We are all neurodiverse.
  2. The dyslexic experience is but one experience among many that have the same underlying cause: a systemic intolerance to holistic.
  3. Without us there would be an impoverished world for all (Newton, Einstein, Leonardo de Vinci, Picasso, Churchill, Tarantino, Spielberg, Disney, Branson, Ben Elton, John Lennon).
  4. We are entitled to be different and to learn and work differently.
  5. All of us with specific learning differences are disabled by an intolerant world. Changing it requires solidarity among us all.
  6. Changing an intolerant world changes it for the better for all.

Demands

  1. There must be no policies about neurodiversity, except those developed by and with those of us most affected by the policy implementation
  2. There should be no teaching intervention without representation- we have had enough of the tyranny of ‘experts’.
  3. There needs to be a zero tolerance to linear measures of humanity and the insistence on linear sequential teaching and communication strategies
  4. The future of the world depends on allowing us to be different and to learn and work differently. This involves:
    • High interest learning based on passionate interest, rather than an insistence on learning ‘the basics’.
    • Flexible teaching that values purpose and personalised timing, and ends the herding of children together by age to ‘learn’ a national ‘curriculum’
    • Nurturing the free association of ideas
    • Encouraging problem solving, thinking outside the box, and the creation of solutions rather than limit academic study to the critique of others’ ideas.
    • Giving equal value to visual and verbal thinking[34]

Controversies

The neurodiversity concept is controversial.[4] 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.[35] 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.[35]

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."[4] 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."[4]

See also

References

  1. ^ "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement" (PDF). Linköping University. Retrieved November 5, 2014. {{cite web}}: line feed character in |title= at position 37 (help)
  2. ^ "Position Statements". Autistic Self Advocacy Network. Retrieved April 21, 2013.
  3. ^ a b "What is Neurodiversity?". National Symposium on Neurodiversity at Syracuse University. Retrieved October 2, 2012.
  4. ^ 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.
  5. ^ a b Walker, Nick (2012). Julia Bascom (ed.). Loud Hands: Autistic People, Speaking. Washington, DC: The Autistic Press. pp. 154–162. ISBN 9781938800023.
  6. ^ a b c d Solomon, Andrew (2008-05-25). "The autism rights movement". New York. Archived from the original on 27 May 2008. Retrieved 2008-05-27. {{cite news}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help) Cite error: The named reference "Solomon" was defined multiple times with different content (see the help page).
  7. ^ Mission Statement. Autism Acceptance Project. Retrieved on 2008-11-24.
  8. ^ Mission Statement. Aspies for Freedom. Retrieved on 2008-11-24.
  9. ^ Autism Network International presents Autreat. (2008-05-23) AIN.
  10. ^ "Declaration From the Autism Community That They Are a Minority Group" (Press release). PRWeb, Press Release Newswire. 2004-11-18. Retrieved 2007-11-07.
  11. ^ a b c d e Harmon, Amy. Neurodiversity Forever; The Disability Movement Turns to Brains. The New York Times, May 9, 2004. Retrieved on 2007-11-08.
  12. ^ Dawson, Michelle. The Misbehaviour of Behaviourists. (2004-01-18). Retrieved on 2007-01-23.
  13. ^ Gal L (2007-06-28). "Who says autism's a disease?". Haaretz. Archived from the original on 1 July 2007. Retrieved 2007-07-16. {{cite news}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  14. ^ "In Support of Michelle Dawson and Her Work". Autistics.org. Retrieved 2012-03-21.
  15. ^ Waltz, M (2013). Autism: A Social and Medical History. London: Palgrave Macmillan. ISBN 0-230-52750-7.
  16. ^ John Robison at IMFAR: On Autism Rights, Ethics, & Priorities
  17. ^ Kapp, Steven K.; Gillespie-Lynch, Kristen; Sherman, Lauren E.; Hutman, Ted (January 2013). "Deficit, difference, or both? Autism and neurodiversity". Developmental Psychology. 49 (1): 59–71. doi:10.1037/a0028353. PMID 22545843.
  18. ^ 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.
  19. ^ a b c Griffin, Edward; Pollak, David (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.
  20. ^ Kelland, Kate (4 June 2013). "Thinking differently: Autism finds space in the workplace". London, UK: Reuters. Retrieved 4 June 2013.
  21. ^ 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.
  22. ^ 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)
  23. ^ 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.
  24. ^ Morrice, Polly (January 29, 2006) "Otherwise Minded" The New York Times, review of A Mind Apart: Travels in a Neurodiverse World
  25. ^ Thomas, M. E. (March 10, 2014) "Neurodiversity = all inclusive?", Sociopath World. Retrieved May 17th, 2014.
  26. ^ Mackenzie, Robin; John Watts (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)
  27. ^ a b Blume, Harvey (September 30, 1998). "Neurodiversity". The Atlantic. Retrieved November 7, 2007.
  28. ^ 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.
  29. ^ 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.
  30. ^ a b Sinclair, Jim. Don't Mourn For Us. Autism Network International, n.d.. Retrieved on 2013-05-07.
  31. ^ Home page. DANDA. Retrieved on 2007-11-08
  32. ^ "Brain.HE".
  33. ^ Cooper, M (2010). Neurodiversity and Dyslexia; Challenging the social construction of specific learning difficulties.
  34. ^ Ross Cooper. "The Holist Manifesto".
  35. ^ a b Pollak, David. 2009. "Neurodiversity in Higher Education." John Wiley & Sons, Ltd.

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.
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