Martijn “McDutchie” Dekker’s blog

13 July 2023 – posted by Martijn Dekker

A correction on the origin of the term ‘neurodiversity’

Summary

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:

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].

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.

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: 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's 29 Oct 96 01:43:05,

We'll return to pschwarz@ix.netcom.com 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: tlang@freeway.apana.org.au
|
| Standard disclaimer: The views of this user are strictly his own.

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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.

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