A brief history of “Neurodiversity” as a concept and perhaps a movement

Volume 1. No. 5

A brief history of “Neurodiversity” as a concept and perhaps a movement

 

July 13, 2017

By Laurence Arnold

 

Abstract:

This is in effect the first part of a rejected paper for another journal. It was rejected for good reasons, and fared equally badly when submitted to this journal for the first time for two very good reasons:  the article was not clear and it was trying to do two things quite disparately. In essence it was two articles cobbled together in a hurry. Nonetheless when each of those parts is considered separately there is merit in publishing the history section, with some editing as a standalone article. It is a story that needs to be told  in order to correct papers and publications.


 

A brief history of “Neurodiversity” as a concept and perhaps a movement

By Laurence Arnold

The ‘Neurodiversity’ perspective and where it comes from.

You can find a description of ‘neurodiversity’ Wikipedia,  (Various, Wikipedia, neurodiversity) but that is highly edited and certainly not the article as was, when I first came across it, indeed the article in Wikipedia can be seen as a town that changes hands between occupying forces whose inhabitants learn to whistle Dixie, or the Battle Hymn of the republic as they cross the street.  To recap however, the word was first used in the context of disability studies by Judy Singer (Singer, Why Can’t You Be Normal For Once in Your Life?, 1999) in a paper entitled “why can’t you be normal for once” and it contained the notion that neurology, in the sense of all those axons and neurones that interconnect in the human brain, is very diverse.  It has since become a much misunderstood and misused word, whose meaning in the minds of different actors has become as diverse as those minds themselves.

The Editor of this journal open confesses to have been in the camp that narrowed the words usage to the territory contained by  a certain clustering of so called ‘disorders’ as enumerated in the Diagnostic and Statistical Manual (DSM) (APA)

"Neurodiversity is a word that has been around since autistic people started putting sites on the internet. It has since been expanded to include not just people who are known as "autistics and cousins", but to express the idea that a diversity of ways of human thinking is a good thing, and dyslexic, autistic, ADHD, dyspraxic and tourettes people to name but a few all have some element in common not being neurotypical in the way our brains work." (Arnold, Coventry Neurodiversity Group, 2004)

For some people it meant autism only, as instanced on autism.org, (Anon)  a collection of writings by autistic people started in the late 1990’s and somewhat sporadic existence since.  The term Neurotypicality was concocted, first as a satire in the form of a thought experiment, of what it would be like if mainstream thinkers (for want of a better word) were categorised as mentally ill, a bit like Samuel Butler’s satire Erewhon (Butler, 1872).  There the notion was to try and give the non autistic individual a sense of what it was like to be pathologised and stigmatised, in a similar way to Finkelsteins famous parody of the village. (Finkelstein, 1975)

Alas ‘neurotypical’ as a faux binary opposite to ‘neurodiversity’ has since become reified into a term used equally amongst an autistic community and the self-same academic psychiatric community it parodied. The word has become colonised by the enemy and as a consequence I prefer simply to refer to non-autistic people as not being autistic does not necessarily imply that everybody else is within that bell curve of ‘neurotypicality’.

US perspectives

The word has had journalistic exposure in the United States starting with Harvey Blume (Blume, 1998), who is often given the first print citation, as his article slightly predates the appearance of Singer’s more scholarly iteration in French and Corkers book. I regard this as unfortunate, as the word was apparently used in Singer’s thesis (Singer, Odd People In: The Birth of Community Amongst People on the Autistic Spectrum: A personal exploration of a New Social Movement based on Neurological Diversity, 1998) before that and had some currency in internet discussions since. The earliest internet citation is found not in relation to the world of autism at all but in connection with dyslexia in the usenet community. (Laurie, 1998)it is worth quoting:-

“Any thoughts on the idea of neurodiversity pride: that is, that those who arewired differently from what is considered the norm, are not BAD, or DISABLED and don't need "fixing", but merely ...different?”

A later US press iteration can be found (Harmon, 2004)

The word has had an outing on the World wide web too with domain names being fought over. The top level domain (Seidel) was registered to Katherine Seidel in 2001 but did not become active until around the time the domains Neurodiversity.info and Neurodiversity.co.uk were registered by the Editor of this journal (2003). Seidel’s site was a series of links to a range of articles and blogs about autism.

One of those links is the Autism Hub (Various, The Autism Hub), a group of often contentious blogs which at the height of the hub’s activity attracted much negative attention from ‘curebies  (confirmed medical model parents who advocate for a cure for autism) who perceived that the notion of Neurodiversity was somehow responsible for stealing their children from them. (Doherty, 2007)

Indeed at the time of the vaccine controversy this site and a number of others were subpoenaed in a ‘fishing’ lawsuit alleging big pharma complicity in suppressing evidence of vaccine harm. The suit was eventually dismissed and the lawyer disciplined. (Digital Media Law Project, 2008)

UK perspectives

In the UK less the word led a separate existence, there were attempts to build up community around the broader than autistic but still narrow sense of the word.  I founded one such association, which gives rise to the earliest print citation in the UK, in a newspaper article.  The late Mary Colley, of the Dyspraxia Foundation Adult group formed another nationally, called DANDA (DANDA, 2015).  The Editor of this journal  had an early disagreement with DANDA over the adoption of ‘developmental’ neurodiversity in the title for two reasons;  firstly because it was medicalising the notion of ‘neurodiversity  and secondly because of challenges to the idea that neurodiversity solely encompassed the neurological structure one was born with, having  been challenged in my thinking by people diagnosed with cerebral palsy who were prepared to argue that neurodiversity was not the exclusive domain of a narrow subset of invisible disabilities, but was a broad spectrum that surely must include Cerebral Palsy as a  divergent form of neurology from the ‘neurotypical’ peak of the bell curve.  It had also occurred to the author that despite the 2004 (op cit) definition of ‘neurodiversity’ many of the difficulties we in the dyspraxic, dyslexic and autistic communities faced had their overlaps with people who had acquired these impairments through brain injury or cerebro vascular accident. The history of neurology is one of learning from specific brain injuries what certain parts of the brain do. It was the fact that DANDA in its early days had refused membership to an individual (Arnold, Private conversations, c 2005) with impaired speech due to cerebro vascular accident, that I distanced myself from the nascent organisation. It nevertheless went on to field a number of individuals who have become prominent in the British version of the ‘neurodiversity movement’ . Indeed ‘neurodiversity’ as a term has been cited in Hansard (UK Parliament, 2005) by reference to the neurodiversity autistic spectrum advice and action group set up by the then Disability Rights Commission.

USA again

Notwithstanding the potential failure of the ‘neurodiversity movement’ in the UK to adopt a fully pan neurological impairment perspective it has fared worse in the USA in that the debate has become very polarised for reasons that may be addressed in a subsequent article.

Bibliography

Anon. (n.d.). The Institute for the Neurotypical. Retrieved April 21, 2015, from http://isnt.autistics.org

APA. (n.d.). Diagnostic and Statistical Manual of Mental Disorders (various ed.). American Psychiatric Association.

Arnold, L. (2004). Coventry Neurodiversity Group. Retrieved April 21, 2015, from http://cng.larry-arnold.net/neurodiversity.htm

Arnold, L. (c 2005). Private conversations.

Blume, H. (1998, September 1). Neurodiversity. The Atlantic Monthly.

Butler, S. (1872). Erewhon or over the range. London: Trubner & Co.

DANDA. (2015). DANDA. Retrieved April 21, 2015, from http://www.danda.org.uk/

Digital Media Law Project. (2008). Sykes vs Seidel. Retrieved April 21, 2015, from http://www.dmlp.org/threats/sykes-v-seidel

Doherty, H. (2007). Facing Autism in New Brunswick. Retrieved April 21, 2015, from http://autisminnb.blogspot.co.uk/2007/12/offensive-autism-language-autie-and.html

Finkelstein, V. (1975). To Deny or Not to Deny Disability - What is disability? Magic Carpet, 27(1), 31 -8.

Harmon, A. (2004, May 9). “The Disability Movement Turns to Brains . The New York Times.

Laurie. (1998). Google groups search. Retrieved Apil 21, 2015, from https://groups.google.com/forum/#!msg/alt.support.learning-disab/XPxzRGlTVfY/8wbHcnheWJoJ

Seidel, K. (n.d.). Neurodiversity.com honoring the diversity of human wiring. Retrieved April 21, 2015, from http://www.neurodiversity.com

Singer, J. (1998). Odd People In: The Birth of Community Amongst People on the Autistic Spectrum: A personal exploration of a New Social Movement based on Neurological Diversity. Sydney: Faculty of Humanities and Social Science University of Technology, Sydney.

Singer, J. (1999). Why Can’t You Be Normal For Once in Your Life? In M. Corker, & S. French (Eds.), Disability Discourse. Open University Press.

UK Parliament. (2005). Parliament Business. Retrieved April 21, 2015, from http://www.publications.parliament.uk/pa/cm200506/cmhansrd/vo051121/debtext/51121-16.htm

Various. (n.d.). The Autism Hub. Retrieved April 21, 2015, from http://autism-hub.com/

Various. (n.d.). Wikipedia, neurodiversity. Retrieved April 21, 2015, from http://en.wikipedia.org/wiki/Neurodiversity

 

 

 

 

 

 

 

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