Revealed: Who really coined Neurodiversity?

Blume? Singer? Or Turtles all the way down? 

Spoiler: It really was me!

I refer to the scurrilous and erroneous trashtake of my work that the two most prominent academic Johnny-Come-Latelies to the Neurodiversity discourse managed to get past the eagle eyes of the esteemed journal Sage Publications Autism. I refer to Dr Robert J Chapman, Nick Walker, and their 4 devotees, who identify themselves as a group of “6 International Scholars of Neurodiversity”. For brevity I will refer to them as 'The Sage 6'  or the '6 Contenders'

I begin on a far from trivial correction: 

The Sage 6 are hardly “International” scholars. 

(American + British) does not add up to “Internationality” It adds up to North-Centrism  aka Northern Hemisphere Cultural Hegemony

Quite an over reach, especially when the  appear to have been unable to shake off the ingrained habits of British Colonialism and USA Cultural Imperialism

The 6 contenders rely heavily on two shaky platforms:

1. The, dare I say, resentful “evidence” of a non-scholar Martijn Dekker whose ignorance of academic process in the social sciences should be glaringly obvious to any academic. For Dekker's information, every academic thesis undergoes a comprehensive ethics review before acceptance. I have rebutted Dekker’s absurd confabulations here
   
   
2. A lot of freewheeling assumptions about the role of American freelance journalist Harvey Blume in the development of the term Neurodiversity, all of which can be traced back to the work of Wikipedia’s amateur “editors”

While we can blame Wikipedia and its amateurs, so much more culpable are any lazy academics who venture to use Wikipedia as a research authority, or even a research gateway.

I would hope the 6 academics have not been relying on Wikipedia's nameless and self-appointed northern "editors" given their dubious qualifications - assuming they even have any. Wikipedia’s scandal-snorting amateurs have been playing around with my entries for going on 3 decades now. I long ago gave up trying to set the record straight with them.

I cannot help wondering if it is completely beyond Wikipedia's amateur so-called "editors" to imagine that someone who is neither American nor Male can nevertheless be capable of coming up with a "Big Idea" all by ourselves!

Click to enlarge if not familiar
with the term 

Reflexivity

BTW, academics working in the social sciences are required to practice reflexivity and question their own motives. I commend 

this practice to the Sage 6.

Harvey Blume

If the authors had shown even a modicum of common sense, they might have made some pertinent enquiries. They might have found out that I corresponded with Harvey Blume for many years from 1997 onwards. Indeed I believe I shared this information years ago with Chapman.  I have retained my correspondence with Blume, which shows, unsurprisingly, that he knew nothing about disability politics or the Social Model of Disability and learned the term "neurodiversity" from me. He wrote about it once or twice and never again. He did not cite me, nor as an op-ed writer did he need to. It didn't bother me in the least at the time, because who knew that 20 years later, the Neurodiversity movement I wanted to promote would actually go viral. 

Transcript of correspondence with Blume in which I mention Neurodiversity prior to his being 

 ''the first to publish''. I use it freely because I had already talked to him about it on the phone.

Where I said ''that I'm sure I coined Neurodiversity'' I also stated that the concept was probably''in the air'' aka the zeitgeist. I said the same thing in my thesis. All paradigm shifting ideas arise from the zeitgeist, but it takes a theorist to name, explicate and analyse them first. But I wasn't about to bignote myself then - nor did I ever dream that my idea would 'take off'. I make no apologies. I hope my contenders will not seize upon my reticence as they seized on a conversation I had with Jane Meyerding when I asked her if she had ever heard the term Neurodiversity. I asked her because she had been in the USA mainstream of the Autistic Self-Advocacy Movement long before me.  I didn't want to claim the coinage until I was absolutely sure that the word didnt exist. I had exhausted all the resources of university libraries, the internet and never found it. Jane confirmed she had never come across it, which left me free to use and interpret it in my thesis. Notice that my defamers interpreted my correspondence with Jane in a twisted and mean-spirited way 

It is frankly galling to find Blume getting equal billing with me in the history of the movement, when he was simply a freelance journalist specialising in interviewing literary figures, who wrote about ND once, picked my brain,  and moved on to chase other rabbits.  

Meanwhile, the development of this concept was my life's work, born out of great family hardship and struggle and my fortuitous discovery of Disability Studies. And it was NOT written just for the sake of catharsis, but also because I didn't want other families affected by Autism to have to endure the same.

Nor do journalistic ethics or the laws of defamation appear to daunt the Wikipedia crew. whose hogwash has been lapped up by my academic rivals. Hardly surprising, since they well know that defamation cases can only be afforded by corporations and billionaire

Envy

A little time-honoured Philosophy might assist them. Note the time-dishonoured sexism I have been forced to correct. 

The final absurdity

How could this possibly have got past the learned editors of Sage Publications?

Having made up their minds that the term Neurodiversity could only be attributed to anyone else but me, my competitors came up with this gem of illogic.

Unless further archival evidence comes to light, it is possible we will never know who coined the term ‘neurodiversity’.

All I can say in reply to this absurdity is that if it wasn't me 

then it could only have been coined by  

'Turtles all the Way Down''

____________________________________________________________

And finally, a useful lesson from our ancient sages

tho I was forced to adapt it as below

_______________________________________________________

Bibliography

The Provenance of the Neurodiversity Concept

Judy Singer

*Thesis

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. A thesis presented to the faculty of Humanities and Social Sciences in partial fulfilment of the requirements for the degree of Bachelor of Arts Social Science (Honours), Faculty of Humanities and Social Science, University of Technology, Sydney, 1998. Submitted September 1998.

Book

Singer, J. (2016) NeuroDiversity: The birth of an idea. Kindle https://www.amazon.com/NeuroDiversity-Birth-Idea-Judy-Singer-ebook/dp/B01HY0QTEE/

Book Chapters

Singer, J. (1999). Why can't you be normal for once in your life?: From a 'Problem with No Name' to a new category of disability. In Corker, M. and French, S. (Eds.). Disability Discourse Open University Press UK https://www.worldcat.org/title/disability-discourse/oclc/39182312

Singer, J. (2002). When Cassandra was very very young. In Rodman, K. (Ed.) (2002) Is anybody listening? Jessica Kingsley Publishers, UK

Singer, J. (2003). Preface: Travels in Parallel Space: An Invitation. In Miller, J. K. (ed). Women from Another Planet? Our Lives in the Universe of Autism 1stBooks Library, New York

Singer, J. (2019) Reflections on the Neurodiversity Movement 20 years on. In Neurodiversity: 20th anniversary of the birth of the concept: Advocacy for positive recognition of human diversity and its future available https://www.etsy.com/ca-fr/listing/701221413/neurodiversity-20th-anniversary-of-the?

Translation available at La Neurodiversité - 20e anniversaire de la naissance d'un concept: Plaidoyer pour la reconnaissance positive de la diversité humaine et pour son avenir https://www.etsy.com/ca/listing/688599087/neurodiversity-20th-anniversary-of-the?

Government Publication

Singer, J. (2000).  Disability Employment Services Information Kit.  Department of Family and Community Services, Australian Government publication (Comprises 8 illustrated booklets, half in Easy English and half in Pictorial English, fact sheets and posters. 50,000 copies in print, distributed to every Disability Employment Service office in Australia)

Academic papers

Singer, J. (1999). No Longer Fair Game: Human Rights for Nerds, Weirdoes and Oddballs: The current situation of people with Autistic Spectrum Disorders in the NSW education system. A paper given at the 1999 Conference on Human Rights, Disability, and Education at the University of NSW.

Singer, J. (1999). Uncovering the Neurological Procrustean Bed. A paper given to the "Sydney Disability Research Network". University of Technology, Sydney

Singer, J. (1999). Voice and “Neurological Difference”.   A seminar paper given to the "Sydney Disability Research Network"  UTS

Satirical Pieces

Singer, J. (1998) NT Social Skills Deficiencies: A case study available archived online by Eric Engdahl at The Institute for the Study of the Neurologically Typical  https://erikengdahl.se/autism/isnt/

Singer, J. (1998) What to do if you suspect your child has NT available archived online by Eric Engdahl at The Institute for the Study of the Neurologically Typical  https://erikengdahl.se/autism/isnt/

 

Debut Appearance of the Word “Neurodiversity”

Singer, J  (1997)  Mentioned by Judy Singer in private email to Harvey Blume. Correspondence archived, pictured above. 

Blume, H (1998)  On the Neurological Underpinnings of Geekdom The Atlantic Monthly: September 1998

Blog

Neurodiversity 2.0

What is Neurodiversity?

The Price of Fame: Envy

First published September 204

Click to read my rebuttal of the false allegations

I cannot deny enjoying the recognition that I have received since my 1998 Honours thesis in which I coined the term Neurodiversity was rediscovered in 2013 by Steve Silberman*.  I worked hard for it and based it on the "lived experience" of my family, a life of hardship, outsiderhood, disclocation and poverty in a land of opportunity, which I later realised had much to do with the fact that the female line of my family are all autistic. And compounded by the injuries of history, which turned us into refugees from Eastern Europe when I was 5 years old.  But with Fame comes a price. We are all prone to a selection of the Seven Deadly Sins, but I am not in a confessional mood about mine. So let's move straight on to the sins of the self-identified "international scholars" who over the past 6 months since the 12th March 2024. have been making my life a misery with their selectively researched and libellous falsehoods I don't know which other sins they are capable of, but there is one that is suggestive. The perceptive among you will have guessed it... Envy  Hieronymus Bosch the Seven Deadly Sins

Over the past year, two prominent figures in the development of the neurodiversity discourse, Robert J Chapman and Nick Walker, along with their associates, have initiated a disinformation campaign targeting me

At best, for their sake, and my own belief in human decency, I can only hope these people sincerely believe their calumnies, and this is not simply a pitiful case of vicious academic rivalry.

They appear to rely heavily on the testimony of Martijn Dekker, a computer programmer, who had the skills to set up InLv an online email discussion group.  But as far as I can see he has no knowledge of the discipline of sociology. . 

Dekker has written a blog piece that is a massive and uneducated attack on my reputation, and dare I say tinged with resentment and malice, for reasons I cannot understand. 

He is so ignorant of what sociologists do that he claims that I got my "ideas" from InLv

Not at all. 

Click to enlarge

I "got" my ideas from Disability Studies and the Social Constructionist Model of Disability 

What I got from InLv was just some of my data. 

Because InLv was far from the only group I belonged to. 

I was a member of several other Autism support groups,: Some international, some  Australian,  some online, some face to face: 

Online: 

I was a member of 

• InLv of course, as above. 
• the Leeds University Disability List, the pre-eminent international discussion group for academics and scholars in the Disability Studies field
• Ozautism, an Australian Support Group
• the  Women from Another Planet collective formed to publish a collection of essays by autistic women on their experiences. I wrote the preface to the collection. 
• and a few others whose name I have forgotten - this was 20+ years ago! 

I created 

• ASpar, an online international discussion group, for people raised by Autistic parents. 

In person:

I was 

• the secretary of Sydney and regions largest autism support group, the Inner West Autism and Aspergers Support Group
• an elected director of Shelter NSW the peak body for low income renters. both private and public housing, where I advocated for more research on the relationship between Autism, poverty and homelessness
• the instigator and then co-creator in 2003 of ASteen a social club for autistic teenagers which had around 200 members by the time I handed over the reigns when my daughter was out of her teen. I provided the parameters of the club, which were my insistence that we would be strictly about having fun - fortnightly weekend family outings to fun venues in sSydney and surrounds and camps, and absolutely NOT about trying to change our children. More than 20 years later, I see the club is still going strong! 

My perceptions of InLv

InLv was a support group where people shared narratives basically about sharing our experiences of growing up autistic. But what struck me about this group, was the lack of awareness of the extent to which disability can be socially constructed.  It was not surprising because the Social Model of Disability was not well known in those days, so I was fortunate in discovering Disability Studies in those days.  I believe I made some efforts to respond by adding some insights about the social construction of disability, but on the whole I was glad to be given the space to share my own experiences of exclusion and discrimination as an autist, and I did not wish to preach. 

I salute Martijn Dekker for making this group possible with his technical expertise. Because InLv was the largest of al these groups, and the one in which I participated most,  I decided to ask several members for permission to quote them in my post.  With their agreement, we also decided on aliases for them in work. All who I approached agreed. There was one individual who did wish to be identified, and I honoured that too. I cannot recall now whether they were InLv members or not. 

Please take care to read my line by line refutation of Dekkers calumnies on this blog at Confabulations or Lies? A Correction of Martijn Dekker''s False "Memories".

It is extraordinary that despite the combined intelligence that doctorates should surely confer on these 6 eminent scholars, they have somehow managed to suspend all disbelief at Dekkers clearly unscholarly opinions. Again, it is anyone's guess why they would stoop to this. 

The defamatory and easily-refuted falsehoods of this confederacy have had a huge impost on my time and well-being.While easily refuted with factual evidence, the process is immensely time-consuming, and has created ongoing damage to my health and well-being. 

This gang have managed to get their farrago of misinformation published by the esteemed academic journal Sage Publication. It has taken me months to refute their confabulated and cherry-picked allegations. 

Note that unlike this crew, I possess original documents, while they rely on internet scuttlebutt and their their own wilful imaginations. 

It is so much easier to make up a story than to meticulously refute it,  but it takes a massive effort to disprove it.  Because... 

I am just about finished with my line by line refutations, 

I have made a start on 2 refutations here:

Reflections on the Neurodiversity Paradigm: Sage Journals publish defamatory allegations by Chapman, Walker et al (neurodiversity2.blogspot.com)

Reflections on the Neurodiversity Paradigm: My Response to Martijn Dekker's Libels (neurodiversity2.blogspot.com)

How they display themselves versus the reality

 Draw your own conclusions

* A note on Steve Silberman

I am grateful for this article by Steve Silberman for bringing my work to wider attention. 

Sadly Silberman fell for the Transphobia Libel, disseminated it, and refused to discuss it with me. 

For that refusal, I am not feeling forgiving. I see it as evidence of underlying misogyny, a biased willingness to believe derogatory information from a sense of gay victimhood,  and unforgivable for an experienced journalist. 

Featured Posts

Notice of Defamation

The highly-respected academic journal, Sage Publications, has published the following open letter by 6 American and British academics, which claims to be a "correction" to the attribution of the term "Neurodiversity" to me.

Click to follow link if you must but don't believe a word.
 Come back and read my debunking of this malicious beat-up. 

The letter is  authored by a collective of 6 northern hemisphere scholars who describe themselves "international scholars of neurodiversity", which is about the only true thing in it. The authors including the two most prominent academics in the Neurodiversity field,  Chapman and Walker, who have followed in my footsteps, almost 25 years after I first coined the term and described the concept in a 1998 honours thesis submitted the the University of Technology, Sydney. 

The claim is erroneous. Far from being a "correction" it is riddled with poor research -  confirmation-biased and avoiding contradictory references. 

It has taken me 7 months of exhaustive and exhausting work to refute their poorly researched, cherry-picked and, dare I say, vindictive allegations. These allegations are based heavily on the confirmation-biased "memories" and opinions of a (seemingly resentful) non-academic, Martijn Dekker, who clearly does not understand the discipline of sociology, its methods or the ethics review that all academic theses are subject to. I have completely refuted Dekker's memoir here