Revealed: Who really coined Neurodiversity?

 Blume? Singer?

   or

          Turtles All The Way Down? 

                      Spoiler: It really was me

An Actual Correction of a Scurrilous Libel

I refer to the scurrilous and erroneous trashtake of my work by the two most prominent academic Johnny-Come-Latelies to the Neurodiversity discourse and their 4 acolytes, which they apparently managed to slip
past the prestigious Sage Journals Autism.

This new generation of scholars, apparently devoid of basic research skills and ethics, given the error-laden and malicious identify themselves as a group of “6 International Scholars of Neurodiversity”. In the interests of complete transparency and honesty, I would like to call them by their correct title "6 Northern Hemisphere Pretenders to the Neurodiversity Crown". It is rumoured to be motivated by a "Revenge of the Trans" vendetta but who am I to say?.

They comprise: 

• the Young Pretender to the neurodiversity crown, Dr Robert J Chapman.
  Hey Robert, be my guest, take it if you want it that badly, for you will find that "heavy is the head that wears the crown"
• the Not So Young (despite his very fetching avatar (see below)). "Professor" Nick Walker at some kind of Californian alternative-type tertiary institution. I'm sorry but being a relic of the glorious 60s myself, I'm a bit disillusioned by anything smacking of "New Age"ism. I prefer my professors accredited by reliable national institutions.
• ... and their 4 acolytes

For brevity I will refer to them as "The Sage 6", even though you will find they show anything but sagacity. Here is a recent picture of them leading each other down the pathway to perdition. 

How this crew managed to get their dodgy so-called "research" past the eagle eyes of the esteemed journal Sage Publications Autism and their expert "fact-checkers"is anyone's guess. 

File:The blind leading the blind. Oil painting after Pieter Brueg

Wellcome V0017252.jpg - Wikimedia Commons

According to Sage's publishers, their purported fact checkers are "people with expertise in the matter". I'm still waiting to find out who these so called "experts" are. Whoever they are, Sage's highly experienced editors might surely have had enough brains to realise that the Sage 6 might not have access to my original documents and correspondence that disprove their calumnies and wilful confabulations. And to add insult to injury, Sage have sooled their dedicated in-house legal team onto me, who have sent me some (very deniably) threatening letters, although who am I to decide what feels threatening to me in the face of Sage counsel.. legal counsel, I mean...

I of course cannot afford a legal team to go up against a publishing juggernaut like Sage Journals, especially since the Sage 6 have frightened off any potential employers. Not that I ever made much money anyway, despite the fact that my idea has launched a thousand enterprises. Nothing much since March 2024, when Sage first disseminated these calumnies, except some measly royalties from my book, "Neurodiversity: the Birth of an Idea". (You might like to read it as it contains my original thesis, with a preface about its provenance)  

At Last! 

I begin on a far from trivial correction: 

The Sage 6 are hardly “International” scholars. American plus British does not add up to “Internationality”.   It adds up to North-Centrism aka "Northern Hemisphere Cultural Hegemony".  

Quite an over-reach, especially from people who 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 will be glaringly obvious to any academic. For Dekker's information, every academic thesis undergoes a comprehensive ethics review before acceptance. From this, it can be deduced that my thesis was checked and accepted.  I have rebutted Dekker’s absurd confirmation-biased 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”. 

Spoiler: I have 100s of pages of correspondence with Blume and we only talked about Neurodiversity a few times. Believe it or not, we had other matters that interested us more than petty academic rivalries*.  

* To make it completely clear, our relationship was purely intellectual and not romantic 

To underscore: I am not an academic. I chose not to be. Like anything in life, academia has its strengths and weaknesses. I found it both inspiring and suffocating. The senior academics at my university certainly did not get that I was creating a new paradigm in disability studies which at that time only understood "physical, intellectual, and 'mental illness'" to which autistics were consigned. This is understandable. Academics are very discomfited by paradigm shifts for obvious reasons. 

--------------------------------------------------------------------------------------------

Wikipedia is not an academic resource

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 these individuals even have any. Wikipedia’s scandal-addicted 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 notice the Sage 6's derogatory allegations have been inserted into the item on Neurodiversity, and most disgustingly into my actual biography. I have registered a complaint with wikipedia, but it seems the good ship Wikipedia is deserted... 

Sexism too?

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!

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. 
As a non-academic blogger Dekker is of course free to throw self-reflection to the winds and write whatever fantasies he dreams up. 

Click to enlarge if not familiar
with the term 

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 need tech support to get back into my archives, but I can't afford it, as I already explained.  

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. 

My rivals have even turned his ommission into another scourge to beat me with.  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. 

Sleuths, private eyes, legal eagles are welcome to peruse these documents, carbon-date them if they want,  but I'm damned if I'm going to go to the expense of paying for it myself because of a few trashy rivalries. 

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

 ''the first to publish''.
I use the term with him 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 was not all agog for academic glory and fame like my competitors. And I certainly never dreamed that my idea would "take off". 

So why did I go back to university at all? 

Because I was a single mother of a toddler who needed a lot more care than most - who knew we had autism in the family way back then?.  So I could not work regular hours,   not least because the money I earned would be seized by Australia's punitive welfare system anyway. While on the other hand, going to university meant that I got an extra $30 a week supplement to the carers pension. And something worthwhile to do. When people asked me what I majored in, I joked, but it was no joke, that I majored in anything that happened on Wednesdays, because that was the only day my father had off work,  so he could baby sit my child. 

The Jane Meyerding libel

So, re my rivals meanspirited claims, I hope this crew 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. Perhaps it is because they imagine I think the same way as they do.  Apparently they do not feel the need to check in with others before they make their self-promoting claims. 

Blume

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.  

Blume wrote about "neurological diversity" once, havinpicked 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

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 neuurodiversity"  

(Botha, Chapman, Walker et al)          

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''

____________________________________________________________

Envy

A little time-honoured Philosophy might assist the Sage 6. 

Note the time-dishonoured sexism I have been forced to correct. 

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 2024

Click image 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.