A correction on the origin of the term ‘neurodiversity’

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.

Introduction

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

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

Appropriation

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.

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.

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”.

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.

‘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.

That 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 certainly did the world a favour by describing our neurodiversity ideas and introducing them to academia*, but the concept does not belong to her. She should not be appropriating it and she should not have been lauded for inventing it.

Conclusion

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.

The evidence

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: [email protected]
Errors-To: [email protected]
Reply-To: [email protected]
Message-Id: <[email protected]>
Precedence: Bulk
X-Listserver: Macjordomo - A Macintosh Listserver by Michele Fuortes
Date: 29 Oct 96 09:41:10 +1000
From: Tony Langdon <[email protected]>
To: Multiple recipients of <[email protected]>
Subject: Re: Oliver Sacks

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

It's 29 Oct 96  01:43:05,
We'll return to [email protected] and All's
discussion of Oliver Sacks

 ps> Heh... on ANI-L, whenever there is an outbreak (!) of Theory of Mind,
 ps> someone or other is likely to wisecrack something like "Quick, call
 ps> Uta [Frith]..."

Hehe. :-)

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

 ps> And Francesca Happe, who studied under Frith, seems to be going
 ps> further: to regard seriously the notion that HFA/AS -- or at least the
 ps> bigger-than-anyone- is-prepared-to-realize undiagnosed penumbra --
 ps> really represents a personality type, new extrema on the dimensional
 ps> axes of normative personality, that break down the standard psychiatric
 ps> 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? :) ).

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

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

*** End of message...  Tagline follows. :-) ***

... it's not _normal_, it's just _common_
--
|Fidonet:  Tony Langdon 3:632/367.2
|Internet: [email protected]
|
| Standard disclaimer: The views of this user are strictly his own.

Comments

Addendum (17 July 2023)

The credit that I gave Judy Singer for haing introduced our ideas on neurodiversity to academia was called into question on the grounds that, according to a cite search on Google Scholar, her undergraduate thesis went largely ignored (as undergraduate theses usually are) until its republication in 2016. However, Robert Chapman and Steven Kapp pointed out that it was not her thesis, but her book chapter based on it, Why can’t you be normal for once in your life? (Disability Discourse, 1999), that was widely cited, with 589 citations.

Martijn “McDutchie” Dekker’s blog