You may have come across a memoir by Dutch computer programmer, Martijn Dekker, who founded an online support group called "InLv" of which I was a member.

He claims, see highlighted text below, that I "got the idea" of Neurodiversity from this group. Dekker has never made any attempt to contact me to discuss his claim, which he seems to have plucked out of his own wishful thinking.

His claim is utterly false

If he had contacted me he would have discovered that on the contrary: InLv was just one of about 8 different AS support groups I belonged to from the late 1990s on for about 10 years.

Source: Copilot AI

The groups were both international and local, both online and face to face. And I founded or cofounded several of them:

Cofounded and moderated

ASteen, a social club for NSW teens and young adults in Sydney and surrounds that I specifically designated for fun outings, organised every fortnight.

Founded

ASpar, an online support group for people raised by Autistic parents with several hundred members,

Joined

2003

Sydney's Inner West Aspergers and Autism Support group, IWAASG, which
had about 200 member: Was elected Secretary.
The "Women from Another Planet" collective formed to publish the book of the same name, and wrote the preface for the book.
Ozautism Egroup, an Australian online support group
The UK Leeds University Disability email list, the preeminent academic disability rights discussion grou

Judging by Dekker's avatar, which BTW, he has not updated in 30 years, he could only have been a toddler at the time.

The coinage and its description was first published in my honours thesis in 1998

Original Thesis
Manuscript
(1998)

An abridged version was accepted by the the UK Open University Press and released in 1999.

Despite extensive efforts by my professional rival, eminent neurodiversity scholar Dr. Robert J. Chapman, he could not come up with any prior use of the word let alone a definition of it. Despite the clear evidence in the academic record, he was reduced to the absurd conclusion that

"it is possible we will never know who coined the term ‘neurodiversity’"

If it wasn't me, we can only assume that it had to be coined by "turtles all the way down"

BTW:

the term Biodiversity was coined by Walter G. Rosen. The word Socialism was attributed to Pierre Leroux and Karl Marx.

No one has any problem with that. Could it be because they all happened to be Northern Hemisphere White Males?

My inner Pollyanna has chosen not to use the word "lies" outright about Dekker's piece. I would prefer not to think that he is lying out of pure malice, but that he is genuinely unfamiliar with academic research ethics and sincerely believes the claptrap he has cobbled together.

To use Dekker's own favoured phrase (note the deception of his passive tense) - "it turns out" that his "correction" is actually a memoir, which as my evidence-based rebuttal will show, "turns out" to be a classic of the genre of the "Unreliable Memoir".

There is a well-known trick of memory called "confirmation bias". It happens when a person driven by strong emotions believes what they desperately want to believe.

But in terms of the damage a false confirmation-biased memory can cause, it is as good as, or should I say, as bad as, a lie. And even more so, when embroidered with wishful thinking.

I hope you will not simply "like" Dekker's memoir before reading my corrections.

And I hope truth-seekers will not be deterred by the length of my response. Regrettably, it takes time to replace simplistic fabrications and unreliable memories with complex evidence-based facts. I am doing this for the historical record.

Anyone with background in the humanities will readily see that Mr. Dekker's opinion piece demonstrates a lack of rudimentary understanding of academic process in the social sciences, or the rigorous ethics standards that academic papers must pass.

Thus has been disappointing to find that a number of my academic rivals, see Sage Journals publish defamatory allegations by Chapman, Walker et al, have already endorsed and disseminated his calumnies.

NB: while Mr. Dekker's ignorance can be excused on this matter, academics and professionals who choose to endorse, reproduce, or cite Dekker's defamatory content without exercising due diligence, may find themselves accountable to their respective organizations and institutions.

Contents

Summary
My response to Dekker’s “Corrections”
Appendices
Appendix 1: The Provenance of the Neurodiversity Concept
Appendix 2: Response to Dekker’s "Recent behaviour" smear
Appendix 3: Preface to Dekker's additional allegation
Appendix 4: Harvey Blume's role

Summary

In this document I provide verifiable evidence that this item in Martijn “McDutchie” Dekker’s Blog is an assortment of:

Ignorance of academic protocols
Confirmation-biased false memory
Anecdotal testimonies
Anachronisms
Confusion about the difference between a “term” and a “concept”
Negatively-biased interpretation of ambiguities
Quotes taken out of context

All of which add up to a defamatory polemic.

Response to Dekker’s “Corrections”

Apologies for length of this response. I found it necessary as Mr Dekker has proved the time-worn adage that “a lie goes around the world in the time it takes the truth to tie its bootlace”. And that was before the Internet. Dekker’s calumny did the rounds within a week if not a minute.

Dekker’s Summary

My corrections

Along with many others, I credited Judy Singer with coining the term ‘neurodiversity’. As it turns out, that was in error.

I have found evidence that the neurodiversity concept was fully formed on my online autistic-run group ‘InLv’ as early as October 1996, well before Singer's 1998 thesis. The term ‘neurological diversity’ was already used then as well. The concept and the term both came from the wider community of autistic/ neurodivergent* people, and no one is their sole originator.

I am confident that there was no “error”. As was my responsibility as a scholar, I made a full literature and internet search at the time of writing. The word did not exist anywhere in writing, let alone in the sociological context of the “social constructionist model of disability”.

It is evident that Mr Dekker is confusing “term” with “concept”. The former means “word”, the latter means “idea”

I have never claimed to coin the concept of “neurological diversity”, nor that I was the “sole originator”.

It's just an adjective phrase that anyone could use anywhere anytime. Note that the same goes for "biological diversity".

However, the term Biodiversity is attributed to Walter G. Rosen, who gave it a and no one has questioned that. So what is different about me coining Neurodiversity? Why can't I be acknowledged? If you haven't guessed the reason, read on, and I will give you a clue.

I did coin the term “Neurodiversity” as a buzzword to popularise the concept, and gave it a specific meaning. No evidence to the contrary has been found. As above, I made a thorough literature and online search as required by my university’s ethics committee at the time, and found nothing.

It is easy to mix up the two words, and I have sometimes fallen into the the trap myself. But I could not have foreseen that my obscure thesis, which I never imagined would be read by anyone, would end up subject to such forensic scrutiny.

It should be noted that I am Australian. If the word or concept was in verbal currency in the USA I did not know about it. But again, there is no proof whatsoever that it was.

Further proof that I didn’t claim to originate the term: my thesis was subtitled “A personal exploration of a New Social Movement based on Neurological Diversity”. An intuitive reader would readily discern from this that the movement was already formed. As I noted in my thesis the concept was in the “zeitgeist”, indeed a product of it. I did not be belong to InLv in 1996 when one of its members used the phrase, but did not think to create the buzzword that popularised it.

The point is that even if some individuals may claim that they were already talking about the concept, nobody had analysed it in print, let alone in a scholarly work.

A note about Harvey Blume: see the appendix below.

Dekker’s Introduction	My corrections
He wrtes: In my chapter on InLv’s history in Steven Kapp’s edited collection Autistic Community and the Neurodiversity Movement, I wrote: ”In 1998, Judy Singer from Australia, who identified as having “AS [Asperger’s Syndrome] traits”, turned these InLv discussions into an influential sociological thesis [8] and book chapter [9], citing plenty of group members with their permission, and adding the requisite academic language to lend it legitimacy. Thus, she is correctly credited with coining the term ‘neurodiversity’ [10].”	While I appreciate Mr Dekker’s beginning on this bright note, it does discredit Mr Dekker’s later libellous claims And I did not simply rely on InLv for my work. I was a member of several international online groups, several Australian online groups, a couple of local Sydney groups, was a committee member of two of them, founded my own group ASteen, a social club for teenagers. So I did not "turn" InLv discussions into my thesis, my thesis was based on social theory, and my membership in so many of these other other groups, although I chose to quote mostly but not exclusively from InLV.
Yet, in 1998, Judy Singer wrote in a conversation with another neurodiversity pioneer, Jane Meyerding:* “I’m not sure if I coined this word, or whether it’s just ‘in the air,’ part of the zeitgeist”.	This quote is out of context, and shows Mr Dekker’s confirmation bias: of all the possible explanations of a quote out of context, he has chosen the worst possible interpretation. On the contrary, the full conversation shows that I was pursuing “due diligence” by trying to ensure that I was not succumbing to confirmation bias. As a non-academic, Mr Dekker would not know that sociologists are expected to show “reflexivity”, i.e. question our own motives and the originality of our ideas. (As, of course, should any ethical individual). Thus I contacted Jane Meyerding as she was an American pioneer of the movement. If the “N word” was in currency in the USA she would have known. She replied that she had not heard it before.

Dekker’s Introduction

My corrections

He wrtes: In my chapter on InLv’s history in Steven Kapp’s edited collection Autistic Community and the Neurodiversity Movement, I wrote:

”In 1998, Judy Singer from Australia, who identified as having “AS [Asperger’s Syndrome] traits”, turned these InLv discussions into an influential sociological thesis [8] and book chapter [9], citing plenty of group members with their permission, and adding the requisite academic language to lend it legitimacy. Thus, she is correctly credited with coining the term ‘neurodiversity’ [10].”

While I appreciate Mr Dekker’s beginning on this bright note, it does discredit Mr Dekker’s later libellous claims

And I did not simply rely on InLv for my work.

I was a member of several international online groups, several Australian online groups, a couple of local Sydney groups, was a committee member of two of them, founded my own group ASteen, a social club for teenagers.

So I did not "turn" InLv discussions into my thesis, my thesis was based on social theory, and my membership in so many of these other other groups, although I chose to quote mostly but not exclusively from InLV.

Yet, in 1998, Judy Singer wrote in a conversation with another neurodiversity pioneer, Jane Meyerding:*

“I’m not sure if I coined this word, or whether it’s just ‘in the air,’ part of the zeitgeist”.

This quote is out of context, and shows Mr Dekker’s confirmation bias: of all the possible explanations of a quote out of context, he has chosen the worst possible interpretation.

On the contrary, the full conversation shows that I was pursuing “due diligence” by trying to ensure that I was not succumbing to confirmation bias. As a non-academic, Mr Dekker would not know that sociologists are expected to show “reflexivity”, i.e. question our own motives and the originality of our ideas. (As, of course, should any ethical individual).
Thus I contacted Jane Meyerding as she was an American pioneer of the movement. If the “N word” was in currency in the USA she would have known. She replied that she had not heard it before.

Dekker’s allegations:	My Corrections
But in recent years, Judy Singer has been claiming, and endorsing claims from others, that she not only coined the term ‘neurodiversity’ but also came up with the concept itself (e.g., 1, 2, 3 ). As a result, she is widely considered to be the “mother of neurodiversity” and has received corresponding accolades. NB: The large highlight font was chosen by Mr Dekker. Suggesting that what has distressed him most of all is that I have received so-called “accolades”.	This is false. I have never “claimed” to coin the concept of “neurological diversity”, nor that I was the “sole originator”. But I did coin the term “neurodiversity” with a specific purpose that I made clear: to suggest a catchy name for this “new social movement based on neurological diversity” as I noted in my Appendix:Background Knowledge 1, As above 2, This refers to an incident that has nothing to do with my work on ND. To save myself work, I should ignore it, but since Mr Dekker has decided to throw all the mud he can find at me, I have added an explanatory appendix. 3. This is another mix-up of the words “term” and "concept”. If you read the actual words in the linked piece (which was written by the Neurodiversity Foundation, not by me,) you will see that it is in recognition of my academic work. Dekker appears to be insinuating that I did my work to court fame. On the contrary, I did not expect my work to be noticed. Naturally, I have enjoyed the "accolades".And as I have continued working fulltime in the field (practically never for remuneration, as my main concern is to prevent the inevitable misunderstandings and misappropriations of the concept), I feel I deserve some. But the price of fame has been high, thanks not only to the inevitable trolling on social media, but also by seriously defamatory acts such as Mr Dekker’s. I am sorry he feels under-appreciated. I believe he deserves accolades too for starting up the excellent INLV list.
What actually happened is that Singer joined the online community I was running, InLv, and learned the concept from us, from observing our discussions and interviewing some of our members. This can be verified by reading the ‘Method’ chapter on page 51/52 in Singer’s own 1998 thesis. It was also acknowledged* by Singer herself as recently as 2018. *(Orange highlights by JS)	This did NOT “actually” happen. I did not “learn the concept” from InLv. What was immediately obvious from InLv and other AS support groups was that the members were there to share their experiences. To the best of my memory, I saw little, if any evidence of “sociological awareness” let alone of the “social (constructionist) model of disability” which my work was grounded in. This model was then restricted to Intellectual, Physical, and ‘Mental Illness’”, which did not fit Autistics, so I tweaked it and coined Neurodiversity to augment it. Please do read my method section, as it will become evident that Mr Dekker does not appear to have any understanding of academic process. I created a hypothesis from my membership of InLv (and other egroups) as a “participant observer”, w ith the permission of the people I interviewed. Mr Dekker’s use of the word “acknowledged” is another sign of his ignorance of academic procedure in the social sciences. That word implies that a misdemeanor or crime had been committed! In the method section, I stated my method to ensure accountability, it was passed by my supervisor and my university’s ethics committee, and there was nothing to “acknowledge”.
It may also be worth noting that Singer: Did not fully consider herself part of the autistic or neurodivergent community. In that ‘Method’ chapter, she also describes “sometimes strategically switching from NT [neurologically typical] to AS [Asperger's syndrome] depending on the needs of the moment”.	This is an example of Dekker’s negatively biased interpretation of my words, and it is utterly untrue The reason I couldn’t fully identify as autistic, is due to the trait of “honesty” and blunteness, which as Dekker should know, is considered one of the strengths of the autistic mind. And it was honest to say so because I knew I had more difficulties than could be reduced to that one word. I knew I had autistic traits e.g. I often puzzled why I couldn’t bear to make eye-contact. And I do have an official diagnosis of Aspergers Syndrome based on the DSM IV. It is worth noting that, at that time, diagnoses of Aspergers, Autism, ADHD, and Dyspraxia were siloed. The medical profession then seemed largely unaware that co-occuring conditions were possible. As it turned out, I also inherited ADHD from my father, but what actually made my life most difficult in a sport-loving nation like Australia was being dyspraxic and feeble. I was often humiliated by sports teachers and by being the last to be chosen in teams. I also have a dx of ADHD. When my psychiatrist told me, I couldn't believe it - I am so sedentary! Turns out I have the ADD but not the H. I was a full participant in the online autistic world, - on INLV and elsewhere. INLV was primarily a support group where we all shared our stories and supported each other. It was a wonderful resource, and Martijn did a great job with it. As a result of my Asperger diagnosis, I became a recipient of the disability pension but I knew I had traits of of all those above. This is precisely why I was in the position that caused me to come up with the idea of Neurodiversity. Dekker’s point is also anachronistic. In 1996, the word #neurodivergent did not exist, since it should be obvious that I created the noun it is derived from. And Kassianne Asasumasu only developed it in early 2000. There is nothing wrong with “switching codes” for different situations. Given the stigma attached to autism, I was forced to mask for most of my life. Mr Dekker should be able to understand that.
Given all that, as well as other recent and not so recent developments concerning her harmful behaviour towards vulnerable minorities, it is time to set the record straight	The so-called “not so recent development” refers to the fact that I founded and ran ASpar a support group for people raised by parent/s on “the spectrum”. About 200 people joined and we shared our stories. Obviously those who joined did so because they had experienced a distinct pattern of dysfunctional parenting commensurate with the DSM criteria for autism at the time, which included “lack of empathy”. I made clear that we were telling our stories. And I went to a lot of time and effort to explain that others with autistic parents may have had positive experiences of parenting. Which Mr Dekker seems not to have read. Another example of Dekker’s anachronisms is that the word “Autism” no longer means what it did 30 years ago. And what used to be called “Asperger’s” has now become more of an identity for many people, and exhibits all the positives and negatives that go with identity politics. Including the tendency to accentuate one’s positive traits, while focussing on society’s oppressive behavior. Dekker’s “recent development” is that I join what I confidently assume to be the majority of women worldwide who find it absurd that individuals with male anatomy but without a uterus can declare themselves to be "women." It is quite a libellous stretch to call the understanding shared by the majority of humans that "Man /Woman are the primary binary", an example of “harmful behaviour”. Many non-Western peoples recognise more than 2 sexes, and they all have had the dignity of naming themselves. It seems like Western Trans militants have bought into the very binary that oppresses them. See my Appendix

Dekker’s allegations:

My Corrections

But in recent years, Judy Singer has been claiming, and endorsing claims from others, that she not only coined the term ‘neurodiversity’ but also came up with the concept itself (e.g., 1, 2, 3 ).

As a result, she is widely considered to be the “mother of neurodiversity” and has received corresponding accolades.

NB: The large highlight font was chosen by Mr Dekker. Suggesting that what has distressed him most of all is that I have received so-called “accolades”.

This is false. I have never “claimed” to coin the concept of “neurological diversity”, nor that I was the “sole originator”.

But I did coin the term “neurodiversity” with a specific purpose that I made clear: to suggest a catchy name for this “new social movement based on neurological diversity” as I noted in my Appendix:Background Knowledge

1, As above

2, This refers to an incident that has nothing to do with my work on ND. To save myself work, I should ignore it, but since Mr Dekker has decided to throw all the mud he can find at me, I have added an explanatory appendix.

3. This is another mix-up of the words “term” and "concept”. If you read the actual words in the linked piece (which was written by the Neurodiversity Foundation, not by me,) you will see that it is in recognition of my academic work.

Dekker appears to be insinuating that I did my work to court fame. On the contrary, I did not expect my work to be noticed. Naturally, I have enjoyed the "accolades".And as I have continued working fulltime in the field (practically never for remuneration, as my main concern is to prevent the inevitable misunderstandings and misappropriations of the concept), I feel I deserve some.

But the price of fame has been high, thanks not only to the inevitable trolling on social media, but also by seriously defamatory acts such as Mr Dekker’s.

I am sorry he feels under-appreciated. I believe he deserves accolades too for starting up the excellent INLV list.

What actually happened is that Singer joined the online community I was running, InLv, and learned the concept from us, from observing our discussions and interviewing some of our members. This can be verified by reading the ‘Method’ chapter on page 51/52 in Singer’s own 1998 thesis. It was also acknowledged* by Singer herself as recently as 2018.

*(Orange highlights by JS)

This did NOT “actually” happen.

I did not “learn the concept” from InLv. What was immediately obvious from InLv and other AS support groups was that the members were there to share their experiences. To the best of my memory, I saw little, if any evidence of “sociological awareness” let alone of the “social (constructionist) model of disability” which my work was grounded in. This model was then restricted to Intellectual, Physical, and ‘Mental Illness’”, which did not fit Autistics, so I tweaked it and coined Neurodiversity to augment it.

Please do read my method section, as it will become evident that Mr Dekker does not appear to have any understanding of academic process. I created a hypothesis from my membership of InLv (and other egroups) as a “participant observer”, w ith the permission of the people I interviewed.

Mr Dekker’s use of the word “acknowledged” is another sign of his ignorance of academic procedure in the social sciences. That word implies that a misdemeanor or crime had been committed! In the method section, I stated my method to ensure accountability, it was passed by my supervisor and my university’s ethics committee, and there was nothing to “acknowledge”.

It may also be worth noting that Singer:

Did not fully consider herself part of the autistic or neurodivergent community.
In that ‘Method’ chapter, she also describes “sometimes strategically switching from NT [neurologically typical] to AS [Asperger's syndrome] depending on the needs of the moment”.

This is an example of Dekker’s negatively biased interpretation of my words, and it is utterly untrue

The reason I couldn’t fully identify as autistic, is due to the trait of “honesty” and blunteness, which as Dekker should know, is considered one of the strengths of the autistic mind. And it was honest to say so because I knew I had more difficulties than could be reduced to that one word. I knew I had autistic traits e.g. I often puzzled why I couldn’t bear to make eye-contact. And I do have an official diagnosis of Aspergers Syndrome based on the DSM IV.

It is worth noting that, at that time, diagnoses of Aspergers, Autism, ADHD, and Dyspraxia were siloed. The medical profession then seemed largely unaware that co-occuring conditions were possible. As it turned out, I also inherited ADHD from my father, but what actually made my life most difficult in a sport-loving nation like Australia was being dyspraxic and feeble. I was often humiliated by sports teachers and by being the last to be chosen in teams.

I also have a dx of ADHD. When my psychiatrist told me, I couldn't believe it - I am so sedentary! Turns out I have the ADD but not the H.
I was a full participant in the online autistic world, - on INLV and elsewhere. INLV was primarily a support group where we all shared our stories and supported each other. It was a wonderful resource, and Martijn did a great job with it.

As a result of my Asperger diagnosis, I became a recipient of the disability pension but I knew I had traits of of all those above. This is precisely why I was in the position that caused me to come up with the idea of Neurodiversity.

Dekker’s point is also anachronistic. In 1996, the word #neurodivergent did not exist, since it should be obvious that I created the noun it is derived from. And Kassianne Asasumasu only developed it in early 2000.
There is nothing wrong with “switching codes” for different situations. Given the stigma attached to autism, I was forced to mask for most of my life. Mr Dekker should be able to understand that.

Given all that, as well as other recent and not so recent developments concerning her harmful behaviour towards vulnerable minorities, it is time to set the record straight

The so-called “not so recent development” refers to the fact that I founded and ran ASpar a support group for people raised by parent/s on “the spectrum”.

About 200 people joined and we shared our stories. Obviously those who joined did so because they had experienced a distinct pattern of dysfunctional parenting commensurate with the DSM criteria for autism at the time, which included “lack of empathy”.

I made clear that we were telling our stories. And I went to a lot of time and effort to explain that others with autistic parents may have had positive experiences of parenting. Which Mr Dekker seems not to have read.

Another example of Dekker’s anachronisms is that the word “Autism” no longer means what it did 30 years ago. And what used to be called “Asperger’s” has now become more of an identity for many people, and exhibits all the positives and negatives that go with identity politics. Including the tendency to accentuate one’s positive traits, while focussing on society’s oppressive behavior.

Dekker’s “recent development” is that I join what I confidently assume to be the majority of women worldwide who find it absurd that individuals with male anatomy but without a uterus can declare themselves to be "women."

It is quite a libellous stretch to call the understanding shared by the majority of humans that "Man /Woman are the primary binary", an example of “harmful behaviour”. Many non-Western peoples recognise more than 2 sexes, and they all have had the dignity of naming themselves. It seems like Western Trans militants have bought into the very binary that oppresses them.

See my Appendix

Prior art’	Misleading interpretation of “Prior” Art
As it turns out, not only the concept but also the term well predates Singer’s thesis. In a search in what is left of my old InLv archives (which are confidential), a group message turned up in which InLv member Tony Langdon speaks of the potential benefits of “the neurological diversity of people” – on the 29th of October 1996	Nothing "new" has “turned out” The term “prior art” has a specific legal meaning in patent law for people who want to patent their invention. I have never wished to “patent” or “copyright” the Neurodiversity term or concept. Mr Dekker again confuses “concept” and “term”. I repeat that I did not come up with the concept of “neurological diversity”. But I did come up with the buzzword that popularized the concept #Neurodiversity.
[… Langdon’s message is reproduced below under The evidence, in full and by permission. It was written by Tony Langdon and is part of a longer discussion thread that started out being about Oliver Sacks but had drifted to discussing deficit vs. difference in general. The term ‘neurological diversity’ and the concept behind it are fully there, roughly two years before the publication of Singer’s 1998 undergraduate thesis purportedly coining the term and inventing the movement. The idea of neurodiversity was very much ‘in the air’. Tony was likely not the first to express these ideas either, nor can we confirm he was the first to come up with the term. What is certain is that Judy Singer joined us on InLv, and got the idea from us. She should not be appropriating it and she should not have been lauded for inventing it.	I did NOT“purport” anything. Others may have ascribed that to me. I can not be expected to be aware of every single thing that is attributed to me. I certainly did NOT make the absurd claim that I “invented the movement”. I did absolutely NOT “get the idea” from InLv. My idea was socio-political, and set in an academic thesis. It seems that Dekker thinks “Neurodiversity” is a condition. It does not mean Neuro”Other”. It is based on Biodiversity, the idea that diversity is a positive for any ecosystem. InLv was a support group. I cannot recall any remotely academic discussion about the sociology of “the Autistic Self-Advocacy Movment”, as we then called ourselves. and why it arose specifically in the seismic paradigm shifts that culminated in the “postmodern era”. In case Dekker has not actually read my thesis, answering those sociological questions was the major focus of my work. The secondary focus was a section on my lived experience growing up as an “outsider”. Of course the concept of “neurological diversity” does not belong to any one individual.! My original work clearly pointed out that it constellated from the social relations of the post-modern era. I focused on exploring the reasons for the emergence of a “new social movement based on neurological diversity” (a subtitle of my thesis).
She certainly did the world a favour by describing our neurodiversity ideas and introducing them to academia*, but the concept does not belong to her.	As a full participant, I contributed and shared my ideas and perspectives too. If only the concept did belong to me! I would be a millionaire, instead of an age pensioner living hand to mouth in public housing. And NO. I have not made money out of this. Another of my autistics traits is that my obsessions are with the Pursuit of Truth not the Pursuit of Money. Thus I’ve got none. I am one of the majority of single older Australian woman who have ended up retiring with practically no savings, thanks to structural injustice against women.

Prior art’

Misleading interpretation of “Prior” Art

As it turns out, not only the concept but also the term well predates Singer’s thesis. In a search in what is left of my old InLv archives (which are confidential), a group message turned up in which InLv member Tony Langdon speaks of the potential benefits of “the neurological diversity of people” – on the 29th of October 1996

Nothing "new" has “turned out”

The term “prior art” has a specific legal meaning in patent law for people who want to patent their invention. I have never wished to “patent” or “copyright” the Neurodiversity term or concept.

Mr Dekker again confuses “concept” and “term”.

I repeat that I did not come up with the concept of “neurological diversity”. But I did come up with the buzzword that popularized the concept #Neurodiversity.

[… Langdon’s message is reproduced below under
The evidence, in full and by permission. It was written by Tony Langdon and is part of a longer discussion thread that started out being about Oliver Sacks but had drifted to discussing deficit vs. difference in general. The term ‘neurological diversity’ and the concept behind it are fully there, roughly two years before the publication of Singer’s 1998 undergraduate thesis purportedly coining the term and inventing the movement.

The idea of neurodiversity was very much ‘in the air’. Tony was likely not the first to express these ideas either, nor can we confirm he was the first to come up with the term.

What is certain is that Judy Singer joined us on InLv, and got the idea from us. She should not be appropriating it and she should not have been lauded for inventing it.

I did NOT“purport” anything. Others may have ascribed that to me. I can not be expected to be aware of every single thing that is attributed to me.

I certainly did NOT make the absurd claim that I “invented the movement”.

I did absolutely NOT “get the idea” from InLv. My idea was socio-political, and set in an academic thesis. It seems that Dekker thinks “Neurodiversity” is a condition. It does not mean Neuro”Other”. It is based on Biodiversity, the idea that diversity is a positive for any ecosystem. InLv was a support group. I cannot recall any remotely academic discussion about the sociology of “the Autistic Self-Advocacy Movment”, as we then called ourselves. and why it arose specifically in the seismic paradigm shifts that culminated in the “postmodern era”. In case Dekker has not actually read my thesis, answering those sociological questions was the major focus of my work. The secondary focus was a section on my lived experience growing up as an “outsider”.

Of course the concept of “neurological diversity” does not belong to any one individual.! My original work clearly pointed out that it constellated from the social relations of the post-modern era. I focused on exploring the reasons for the emergence of a “new social movement based on neurological diversity” (a subtitle of my thesis).

She certainly did the world a favour by describing our neurodiversity ideas and introducing them to academia*, but the concept does not belong to her.

As a full participant, I contributed and shared my ideas and perspectives too.

If only the concept did belong to me! I would be a millionaire, instead of an age pensioner living hand to mouth in public housing. And NO. I have not made money out of this. Another of my autistics traits is that my obsessions are with the Pursuit of Truth not the Pursuit of Money. Thus I’ve got none. I am one of the majority of single older Australian woman who have ended up retiring with practically no savings, thanks to structural injustice against women.

Dekker’s Conclusion

My Corrections

Both the ideas and the term ‘neuro(logical) diversity‘ came from the 1990s online community of “autistics and cousins” (consisting then of ANI-L and InLv). The neurodiversity movement emerged from our collective lived experience as neurodivergent people. Designating any person as its sole originator is a mistake.

Martijn Dekker deserves huge credit for his prescience in starting InLv. He was very much a leader who emerged from our collective experiences, just as I like to think I was a writer who did the same. He did a great job, and I give him all respect.

But Dekker clearly, does not understand the difference between citation and appropriation. Nor does he understand the role of Sociologists which is to:

derive data derived from interviewing subjects - with their permission and ethical oversight
aggregate and analyze the data
form hypotheses and conclusions
publish their conclusions for review and informed debate

I certainly did not designate myself as the “sole originator” of “the movement”. In my presentations I often described this phenomenon as a “discourse” that had no leader and no official spokesperson. I was a full participant in the movement, and also an academic observer and first described the phenomenon in a sociology thesis as a “participant-observer".

Appendices

Appendix 1: The Provenance of the Neurodiversity Concept

Let me begin by asserting that I did indeed coin the word “Neurodiversity” first published in my Honours Thesis presented to the University of Technology Sydney (UTS) September 1998[1] and subsequently abridged as a chapter in Disability Discourse, a book published by the UK Open University Press[2] It is a term often misunderstood, so I want to make it clear that I coined it for a specific purpose. I saw that the pioneering work of the Autistic Self-Advocacy Movement was being emulated by other neurological minorities e.g. groups medically-labelled with ADHD and the “Dys”-abilities. And it was evident that they had the potential to become the last great Identity Politics movement to emerge from the 20th century. Below is

For me, the significance of the “Autistic Spectrum” lies in its call for and anticipation of a “Politics of Neurodiversity”. The “Neurologically Different” represent a new addition to the familiar political categories of class / gender / race and will augment the insights of the Social Model of Disability. (p12)

The rise of Neurodiversity takes postmodern fragmentation one step further. Just as the postmodern era sees every once too solid belief melt into air, even our most taken-for granted assumptions: that we all more or less see, feel, touch, hear, smell, and sort information, in more or less the same way, (unless visibly disabled) are being dissolved. (p12)

I had no idea that anyone would ever read my thesis beyond my supervisor and marker. The word came to me in an “Aha!” moment, and I didn’t analyse it. All I intuited was that it was a word that perfectly suited its times, when “hard” neuroscience was eclipsing the soft “science”, of psychodynamics - if it was a science at all.

The meaning seemed “obvious” to me and I forgot all about it, just another idea in my work. But I did know, and was proud of the fact that mine was the first academic sociological analysis of this new social movement, based on the principles pioneered by the academic disability rights movement’s social constructionist model of disability.

The word caught on because it was generated by the zeitgeist. Which had a name “Postmodernism” Since we have moved from Newtonian Modernism to Quantum Era Post-modernism and it seems I was the one who channelled it. Yes, I am an individual with an ego, but at the same time I’m just a node in the intersections of my personal history within world history, geography, and genetic heritege.

Appendix 2: Response to Dekker’s "Recent behaviour" smear

This refers to a couple of twitter posts by a @SpookyLuka, which can be seen at https://twitter.com/SpookyLuka/status/1670992079005302787. If you can forgive me for being human, and feeling "really pissed" (as Dekker's crony @drrjchapman called my reaction to their charming twitter exchanges), let me say that this "Spooky Luka" appears to have butterflies where their brain is supposed to be, judging by her avatar.

My apology was for an ill-timed but hearfelt twitter post, in which I retweeted and agreed with J.K. Rowling that “Trans Women are not Women”, an opinion I am sure is shared by most women who do not live in the trendier enclaves of the Anglosphere. All hell broke loose as a result.

I rescinded the apology because I did not write it in the first place. It was so badly written that I was embarassed at the thought that people would think it was my words. The “apology” was actually ghost written for me by two prominent business people in the Neurodiversity movement, who were naturally worried that their businesses might suffer from their close association with a reprobate like me.

Being a naïve, altruistic fool, as I realised in retrospect, I felt concerned for their businesses and their responsibilities to their employess, so I agreed to it, and I won't name them now either. Not in this post anyway. But one of them is the absolute doyenne of academic and business neurodiversity service providers, the other one is a nice but rather naive guy.

The piece in my name was so badly written and unlike my writing, that the social media mob smelled a rat anyway. I regret my self-sacrifice, because neither of the two business people have ever thanked me for the drubbing I took on their behalf. Call it autistic naivete on my part.

I continue to affirm that Trans"women" can never be women and should choose their own moniker – as do transgender people in many cultures that are not fully colonised by Western Christian Patriarchal Dualism, (Male and Female)... (or suspect).

This does not make me transphobic. It makes me trans-affirming – because the act of self-naming is the most powerful action any minority group can take, (why I felt the need for the new word I coined). It is is both disempowering and humiliating yo be named by the dominant culture or to desperately cling to their categories. Especially because the purpose of such naming is Stigmatising the Other.

The Reality

Countries that recognise and name more than 2 genders

Acault (Myanmar) Alyha and Hwame (Mojave) Ankole (Uganda) Aravani (Tamil Nadu) Ashtime (Maale Ethiopia) Bakla (Philippines) Bangala (DR Congo) Burrnesha (Albania)Calabai, Calalai and Bissu (Indonesia) Chuckchi (Siberia) Fa'afafine (Samoa) Fakaleiti (Tonga) Femminiello (Italy) Guevedoche (Dominican Republic) Hijra (South Asia) Jewish Talmud (6-8 Named Genders) Kathoey (Thailand) köçek (Ottoman Empire) Lhamana (Zuni) Mahu (Hawaii) Mamluk (Egypt) Mashoga (Kenya Tanzania) Metis (Nepal) Mino (Benin) Muxe or Muxhe (Zapotec of Oaxaca) Nadleehi and Dilbaa (Navajo) Ninauposkitzipxpe (Blackfoot) Quariwarmi (Inca Peru) Sekrata (Madagascar)Sistergirls and brotherboys (Aboriginal Australian) Skoptsy (Russia) Transsexuality in Iran Travesti (South America) Waria (Indonesia) Whakawahine (Maori New Zealand) Winkte (Lakota) Xanith (Oman)

See https://www.thirteen.org/program-content/independent-lens-a-map-of-gender-diverse-cultures/

Appendix 3: Preface to Dekker's additional allegation

I have chosen not to respond point by point to Mr Dekkers further allegation below as I hope that I have already proven beyond doubt that Mr Dekker is an “unreliable witness”.

NB: Important to note these conversations took place in 1996. I did not join InLV till late 1997

As Mr Dekker doesn’t appear to have an academic background in the social sciences, he cannot be blamed for not being acquainted with the Social (Constructionist) Model of Disability which provided the framework for my thesis. The “social model” which critiqued the prevailing “(psycho-) medical model of disability” emerged in the late 1980s, and was pioneered by the giants of the movement including Anne Shearer, Mike Oliver, Lennard Davis, Susan Wendell,Tom Shakespeare,

Again, I did not claim to discover any of these. All these new ideas were part of the postmodern zeitgeist.

I cited them.

But what I do claim is that mine was the first academic work to aggregate, analyse and theorise data on the rise of a “new social movement based on neurological diversity”, and thus to add the new category of Neurodiversity to the limited categories of “Physical, Intellectual and ‘Mental Illness’”. Until then, neurodivergent people would either have been masking or being defined as mentally ill - and then being inappropriately treated by the psycho-medical complex of the time

There is nothing new about the conversations below. They too were part of the Zeitgeist of Postmodernism and were going on all the time by then. But they were anecdotal critiques of psychology. Nobody AFAIK was doing any sociological analysis.

Conversation between Schwarz and Langdon

Me: NB: this is a verbatim copy, but I have taken out unnecessary paragraph breaks for the sake of readability

Dekker writes:

Dekker: Below, the quoted text fragments prefixed by ‘ps>’ are by Phil Schwarz. The rest is Tony Langdon’s reply to Phil, interspersed as was common then. The message content is original and unedited. I added the emphasis. Many thanks to Tony Langdon and Phil Schwarz for giving me their permission to quote this in full.

Sender: brain@inlv.demon.nl

Errors-To: postmaster@inlv.demon.nl

Reply-To: brain@inlv.demon.nl

Message-Id: <bf8_9610292048@freeway.apana.org.au>

Precedence: Bulk

X-Listserver: Macjordomo - A Macintosh Listserver by Michele Fuortes

Date: 29 Oct 96 09:41:10 +1000

From: Tony Langdon <tlang@freeway.apana.org.au>

To: Multiple recipients of <brain@inlv.demon.nl>

Subject: Re: Oliver Sacks

[From the Brain InLv forum. Topic: (dys)functions of the brain.]

It is 29 Oct 96 01:43:05,

We'll return to pschwarz@ix.netcom.com and All's discussion of Oliver Sacks Heh... on ANI-L, whenever there is an outbreak (!) of Theory of Mind, someone or other is likely to wisecrack something like "Quick, call Uta [Frith]..."

Hehe. :-) I don't know about Baron-Cohen -- who, for choosing an insipid, scaled- for-media-consumption-as-single-sound-bite title like "Mindblindness", is really the one who should be getting the catcalls -- but Frith herself, if her web page (http://www.cdu.ucl.ac.uk, I think) is any indication, has come at least to the realization that most HFAs develop a theory of mind (not' necessarily identical to the NT variety) by adulthood, by (paraphrasing her here) mechanisms yet unknown. (I consider it classic reverse engineering, myself :-) .)

You're probably right here. NT's don't have any idea what an undertaking this reverse engineering is. :-) And Francesca Happe, who studied under Frith, seems to be going further: to regard seriously the notion that HFA/AS -- or at least the bigger-than-anyone- is-prepared-to-realize undiagnosed penumbra -- really represents a personality type, new extrema on the dimensional axes of normative personality, that break down the standard psychiatric model that posits a wall, a discontinuity, between "ill" and "well".

Interesting conclusion. I've known for a while that traditional personality types 'break down', when I'm around. The 'models' psychologists don't fit, and I fit discontinuous fragments of most of the accepted types. (like existing in a higher dimension,psychologically speaking? :) ).

This is very encouraging to hear. In effect she takes the same stance I do: that autistic wiring-of-mind in and of itself is a difference, not a defect, and that disability arises from the incompatibility of those differences with a less-than-accepting society, and from secondary effects that accompany the wiring differences -- rigidity of thought, phobias, etc., born of perpetually- reinforced disconnects, setbacks, and loss of control of one's own condition -- basic lower and middle layers on the Maslovian pyramid.

I also believe that this is a lot closer to the real picture than what most psychologists think. My own experience is that while I have noticible defecits in social function, and some "everyday" aspects of life, I also have a lot of real, practical abilities.

For example, being in a technical support field, it looks, from my perspective thatmost NT people range from plain 'stupid', to positivitly 'disabled', when it comes to dealing with any hi-tech gizmo. In a sense, this is a special situation where the rules of common-sense are turned around in away that favours me. I'm becoming more sure that what allows the human race to progress socially and technologically is the neurological diversity of people. I.e., the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise. (JS. Yellow highlight added by Dekker, not me)

Perhaps this point of view will lead to a clinical psychotherapeutic future in which mere oddness or difference in AS is not symptomatized, and instead clinical and therapeutic focus are brought to bear upon the truly disabling secondary effects.

The day this happens will be a bright one. However, I believe that a lot of this 'curing' needs to be applied to society at large, rather than the people with AS, for a long term cure to be achieved.

IM(NS)HO, Western society is very sick and in need of urgent treatment... :)

Appendix 4: Harvey Blume's role

Vale

Harvey Blume

17 Oct 2023

I was shocked to discover that Harvey passed away while I was writing this section.

Last week when I heard the news, it was about 3.30 in the morning. I was having a sleepless night and . I'm a sceptic, but what can I make of this? It seems a hell of a coincidence that I should suddenly wake up and wonder if he was "still alive".

I couldn't sleep last night. All kinds of thoughts cycle through my brain in these dark days, and finally thoughts of Harvey Blume popped up. He and I corresponded intensively for a year at least from 1997, and intermittently for the next 10. Not a lot about about Autism and ND, mostly about Jewish identity and wide-ranging issues of current politics or the arts. We fell out a long time ago mostly over Middle East Politics... not an unusual thing to happen ... and other things which I may write about, and no, we were not "in a relationship". Still, over the years since we ceased correspondence, I have occasionally thought to myself... "I wonder what Harvey is up to" ... and I go check out his Facebook page.

But this time, I had a different, an unexpected thought. I found myself thinking..."I wonder if Harvey is still alive"... and then ... this ... what came up first on google...

Obituary...

I tell myself "Surely Harvey Blume is a common name in America,"

But there is the picture I took of him when I met him in Boston.

I'm gutted

Harvey had the most brilliant intellect of anyone I have ever met. He had a dazzling mind and way with words. I visited him in Boston at a time I can never forget - In Septermber shortly after 9/11. I took the picture below at a cafe near his home.

Harvey was a shining star even within the intellectual hothouse that is New York-Boston. He is a great, great loss to the world.

In the traditional Jewish words of condolence, I wish all Harvey's near and dear, "a long life"
I was not able to repost Harvey's Obituary here but it can be found on the Boston Globe site.

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

The rest of this appendix was written before I heard the news

The Provenance

There have been concerted efforts from time to time to give Harvey Blume equal billing on the provenance of the term Neurodiversity, especially on Wikipedia. He and I communicated for several years beginning in 1997, mainly by email and occasionally by phone.

The reality is that Harvey got the word from me.

I first discussed my thoughts on Neurodiversity with Harvey in 1997 via emails which I archived quite a while ago. And due to a surprising discovery while unearthing several cases if documents, I even have the yellowed paper transcripts of our emails to prove it.

Being a journalist he had no obligation to cite me. OTOH I cited him in my thesis as I admired his brilliant way of writing about neurological diversity, which as I said above was NOT a new idea. It should be noted Harvey had no idea of Disability Politics, or the Disability Rights Movement or "the social model of disability" until I filled him in on it. Nor did Harvey have any skin in the game. He literally wrote that one piece and moved on from the field. OTOH, I remind readers that this work is my life - a lifetime of outsiderhood. Then add to that the hard graft of years of scholarship to produce my theories.

It is hard to know why the Wikipedia entry on Neurodiversity keeps being changed to minimize my role. Is it due to innocent ignorance by unqualified self-appointed "editors" or hardcore malice?

Innocently enough perhaps, if edited by entitled Americans and Brits who imagine that every big idea must originate in the Northern Hemisphere. There's a word for that: Northocentricism

Or has the Wikipedia entries about my work been deliberately rewritten by nameless, envious malicious cowards?

In short, ignore Wikipedia on anything to do with current issues.

Harvey Blume also published the term in the Atlantic Monthly, September 1998 well after our discussions and correspondence. Note that he gathered data from the spoof site ISNT - Institute for the Study of the Neurotypical - where I was a contributor. You will find a couple of satirical pieces by me there. Now archived at https://erikengdahl.se/autism/isnt/ntskills.html

Judy Singer - Bibliography

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.

Book

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

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. (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?
French Language Version 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

Blog

Neurodiversity 2.0

What is Neurodiversity?

Satirical pieces

What to do if you suspect your child has Neurotypicality

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/

Endnotes

[i] I have been well aware of intersexuality since the 1990s and offered it as a choice in my “Gender” question for prospective members. I don’t recall Dekker’s InLv offering such a choice.

[i]What is harmful is that Western Christianity still adheres to the patriarchal male/female binary, with scant reference to intersexuality. Other more enlightened culture many in Africas and Indigenous Australia recognise many genders, names them thus affording dignitiy to all. For example the Talmud recognised 6 to 8 different genders and they all have names. Those keyboard warriors against what they like to slur as “Terfs” have no idea how culturally blinkered they are.

* Content created on this website by Judy Singer is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License. Permissions beyond the scope of this license may be available at https://neurodiversity2.blogspot.com/p/copyright.html.

Pages

Tuesday, 7 November 2023

Confabulations or Lies? A Correction of Martijn Dekker''s False "Memories"

Summary