by Judy Singer  5th Feb 2019 ©

I am in awe of Dr Nancy Doyle, founder and CEO of www.geniuswithin.co.uk. Her organization has done so much towards realizing the goals of the Neurodiversity Movement, raised so much awareness of the issues, changed Human Resources practices and assisted so many “People with Neurodiversity” – as her website calls an assortment of people with a range of conditions like Aspergers, Autism, ADHD, Dyslexia, Dyspraxia, etc. This was the second time I had seen this usage of the word. The first time I saw the phrase in a news item at www.baltimoresun.com, I laughed. It seemed so absurd that “diversity”, an abstract concept to express “the state of variation within a larger population”, was being used as if it was a medical condition. And then I realised that the term had gone mainstream, is used positively, and that maybe I needed to rethink my objections.

From a linguistic and sociological viewpoint, I have to dispute this usage. On the other hand, looking at it pragmatically,  if the terminology works and makes the world a better place, I’m prepared to let it go.

Words change cultures and culture changes words. Meaning evolves through debate and discussion. If the meaning of the phrase “People with Neurodiversity” has changed from being linguistically divisive to being pragmatically inclusive, I’m not going to be a stickler for linguistic purity. This is a thought experiment for me too. When I first called for a Neurodiversity Movement in my 1998 Sociological Study[1] of the emergent disability category of “neurological disorders”, I doubt I fully realised the term’s linguistic implications though I was convinced it suited the times. I only spent a couple of sentences on it and thought no more about it. Who knew the idea would catch on the way it has?

Returning to the field 20 years later, I feel some responsibility to look more deeply.

On the one hand, linguistics and sociology …

The problem with the expression “People with Neurodiversity” is that it turns Neurodiversity into the latest fashionable synonym for Disability.

It thus replaces a shortlist of terms like handicap, mental “illness” and learning “difficulties”.  These words were absolutely well-meant. They were intended to remove the stigma associated with disability. But the public was not fooled, and the terms became so laden with stigma that stakeholders had to fight to replace them with their own words.

NB:  I am not arguing that the word “Disability” should be expunged from the lexicon.

This is very much an issue when Asperger’s Syndrome/ High-Functioning Autism/ or “Geek Syndrome” – as they used to be called – shades into Classical Autism. In my thesis, I emphasized that I was only speaking about Aspergers. I have no experience of Classic Autism. The former is a suitable candidate for a Neurological Minority. The latter remains a severe disability.  The DSM V has a lot to answer for, for rolling Asperger’s into Autism, in true medical establishment disregard for the wishes and insights of stakeholders. As a result we are seeing articulate and tech-savvy (mostly young) people claiming the #ActuallyAutistic  label. Some of them imagine they can speak for all autistics, and then disparage “Autism Moms” and those autistic people who feel frustrated by their disability, and dream of a cure. So much so that the #ActuallyAutisctics have engendered an anti-Neurodiversity backlash that wants to throw out the neurodiverse baby, and all its potential,  with the bathwater.

Origins

I came to the ND word from the Green Movement, Environmentalists used the word Biodiversity to argue that the most stable ecosystems are those that are most diverse, from which it follows that all species must be conserved. I thought the same principle could be used by “neurologically different”people who had traditionally been excluded, bullied and humiliated by mainstream society. In an era when no decent person would dream of  mocking someone for their ethnicity or conventional disability, it was OK and even cool to mock Nerds, Weirdos And Oddballs[2] (the usual terminology before the advent of Aspergers). The Neurodiversity Movement is changing this.

On looking more closely, I see that Diversity is universally seen as a property of populations. Biodiversity is the property of the entire biosphere. Ethnic diversity is a property of Nations. Neurodiversity is a property of sentient beings.

Thus Neurodiversity for me is the timeless and incontrovertible reality that every single living being is unique, and that no two human minds, (actually mind-body complexes), are the same.

The whole point of the word Neurodiversity is that no-one can disagree with it. It has no opposite in nature. If humans are not neurodiverse, then they can only be clones.

I argue therefore that ND must remain “sacrosanct”, a univeral truth that we can point to when insisting on the necessity of our existence. The question then becomes, “How does an enlightened society deal with the indisputable reality that  ‘we are here, we are different, we have a role to play’?”.

Thus the role of the Neurodiversity Movement is to unite all the people with simple neurological variants behind the same advocacy banner: i.e. the syndrome formerly known as Aspergers, ADD, ADHD, Dyslexia, Dyspraxia, Stuttering, etc.  All those Neurotribes who have not been appropriately catered for in education or health, all those whose skills and abilities are not recognised because of superficial behavioural traits, all those who have suffered active discrimination in employment – all can advocate for their specific tribe, while banding together under a common umbrella.

Nancy argues that “… the term [Neurodiversity] has a ‘within person’ and ‘between people’ meaning”. I’ve never heard this definition before.  To say that cognitive abilities that flatline on a graph are “Neurotypical”, even if universally low or high, while those whose cognitive abilities show spikes and troughs are “Neurodiverse” within their individual minds… well, it sounds odd, but if the meaning is accepted in common usage, then why not?

But another term has since evolved. Since it has become obvious to many that the adjective “neurodiverse” cannot be applied to individuals, we have to be grateful to the emergence of the term “neurodivergent” as a more elegant replacement for the clumsy construct “neuroAtypical”

Does divergent sound more like deviant than diverse does, as Nancy argues?
For the time being, maybe. But not if “diverse” becomes the new word signifying “Other than us”.

On the importance of naming rights,  Nancy says “… naming and labelling is actually very important, as it defines experience. We didn’t want to get it wrong”,  and elsewhere, “… protecting the right to self-determination is in the Psychology code of ethics, people have the right to name and identify their own experience”.

Exactly!

So how does this mesh with Nancy’s later point:  “Marketing based inclusion is the new thing.  It’s progress and it is led by the Diversity and Inclusion Agenda, that is a powerful lobby in large organisations – public, private, multi-nationals”

Who is doing the naming here?

It seems that public, private and multi-nationals corporations are really the power behind this naming.  I don’t doubt that the people who manage these programs are good people and have consulted widely with stakeholders.   And I accept that if being integrated into the workforce is better for neurodivergent people, we should be grateful for the beginnings of acceptance, and never mind quibbling about language matters.

But is it really better? I am looking forward to seeing long-term followup studies to this. I have noticed that most of my perfectly integrated “neurotypical” friends are constantly stressed out and exhausted. Neurodivergent people point to slower, different ways of being.

I won’t go into critiques of Free Market NeoLiberalism, though I could go on. That is after all the world we live in and must adjust to. And everyone is socialised into it, NT and ND alike. Few of us were born longing to work 9 to 5 for 50 years for someone else’s profit. It took a lot of carrot and stick.

I just hope that the presence of neurodivergent people in the workplace will ameliorate a culture that values speed, pace, efficiency, over individual self-realization.

So, on the other hand… pragmatics

As an impractical dreamer who has never been able to fit into any corporate structure despite a substantial range of “skills”, I am for keeping the linguistically-pure word, and for changing society, not the individual. That is why I am drawn to sociology.

On the other hand, I understand that words evolve. Their meanings change as society changes.

If the usage of Neurodiversity vs Neurodivergence is already so embedded in practice that it is too late to “rebrand”, and if that practice makes the world a better place, then I’m prepared to let linguistic purity go.

I’ve only known Nancy for a short time, so I don’t want to reduce her to a cipher. But for the sake of the dialectic between us, I see her as a high-achieving energetic do-er, who has changed the world by her deeds, and who is carrying out the “spirit” of the Neurodiversity movement, even if not the “letter” as I imagined it.

The world needs both perspectives.  All we can do is present our case as accurately and honestly as we can.

And BTW, I am a sociologist who sees a psychotherapist regularly!

My Synthesis

Ideally, we should keep “Neurodiversity” as an indisputable observation about Homo Sapiens. The role of the “NeuroDiversity Movement” then is to be a federation of different Neurotribes. Its job is explain why the world benefits from the richness of human variance. And let each tribe advocate for their specific needs to be met,  in order that they may contribute to society according to their gifts.

And that is why the word “Neurodiversity” should not be watered-down.

 

NOTES

[1] 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. (Honours Thesis). Sydney, NSW, Australia: University of Technology Sydney (UTS).
This paper is reprinted with a new introduction as
Singer, J. (2017).  Neurodiversity: the Birth of an Idea. Retrieved from https://www.amazon.com/dp/B01HY0QTEE/

[2] Singer, J (1998)  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). 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. & French, S. (Eds), Disability Discourse. Open University Press UK.

 

7 Comments
  1. Kate Gilbert 8 months ago

    Thank you very much for your thoughts Judy – a very enjoyable read (and perfect description of our Nancy).

    • Judy Singer 8 months ago

      Thank you!

  2. Rose 8 months ago

    You might be interested in an example that might mesh both of your thoughts on Neurodiversity, in a way, unless I am a little confused, which is usually the case.

    I did CC for Dyslexic Advantage. They had a speaker, a venture capitalist, named Scott Sandell. who spoke about Silicon Valley and why it was successful. I guess he had been a part of it, he was very Dyslexic, and partnered with a man who was very Autistic, although neither had a label at the time. He said the two of them together were typical of Silicon Valley, that most people there were Neurodivergent. He said they have tried to recreate Silicon Valleys in other countries but it never works because they always try to put the high achievers from top schools with perfect G.P.A.’s in there, thinking it is going to work, and it never does. Thought that was super interesting.

  3. […] rather erratically “clarified” in her article, these motives seem to be complex, motivated mainly as it appears, by Dr Nancy Doyle’s choice of […]

  4. Sarah Quinnell 7 months ago

    As a Neurodiverse person with an ASD presentation, yes thats how I term myself, well I did until i found out i have ADHD as well and now i need a rethink! I find the use of language and how we define ourselves and others define us really interesting. I started off as a Geographer, who studied Biodiversity, which from an academic standpoint to me means ‘the variety of plant and animal life in the world or in a particular habitat, a high level of which is usually considered to be important and desirable.’ The point of biodiversity is the need for variation for survival, that for me is what neurodiversity is, neurological differences that allow the human species to thrive.

    As my academic career moved from Geography, to Behavioural Geography (people’s cognitive decision making in relation to place and space) to Psychology I’ve written a lot about language and the power associated with different narratives and whose voice is or is not represented within them. When you start defining a term or a population for people, quite naturally, some will not be happy with those definitions as they do not represent their experiences or themselves. I can’t speak for all Autistic people because I am just one Autistic person with my own experience of the world through an Autistic lens. While I may have issues with executive function, central coherence etc. how i experience those differences is individual to me. The more I learn about myself through a neurodiverse lens, I was diagnosed with ASD aged 36, the more i am growing into how I want to define myself.

    Judy, you talk here about what you want from / think the term should be.You are known as the neurodiversity pioneer, you gave birth to an idea etc and that is ace, ive read your thesis, mine has lots of pencil notes scrawled over it, one day i hope to discuss with you :). From my reading of this, I see an interesting way to look at the evolution of the term. Like any parent you gave birth to your child (idea) with certain expectations for it, how it would grow and what it would be when it grew up. Now, 20-ish years later your child has grown up and has gone out into the world and has interacted with other people and has grown, evolved and matured. I think your child has done an amazing thing, I am about to run UCL’s first Widening Participation Summer School for neurodiverse young people living in London. We know from research that those with neurodiverse cognitive profiles are drawn to and tend to excel within STEM subjects however, as a group they are still hugely underrepresented in Higher Education. Engineering, the field I now find myself teaching in, is crying out for people to take up the subject, there is a global shortage of Engineers so here I am co-creating a curriculum and an environment with a group of students to look at what we can do to make our educational environments more inclusive and that can only be a good thing, right?

    Nancy’s version of Neurodiversity, which is the one i subscribe to, with its within and between person meaning makes more sense to me and how I interact with other neurodiverse people and with neurotypical people. I also find this way of expressing the term reduces the number of times i hear ‘well arent we all on the spectrum’ or all a ‘little diverse’, which quite frankly is incredible annoying and condescending, in my opinion.

    At the heart of this, you are both talking about diversity of thought, cognitive difference which should be accepted rather than ostracised and that is what the focus should be. However, if you look at all groups be it BME, LGBTQI+ Mental health service users / patients etc. there is always a disagreement over terminology and labels. This is because we are talking about things which are fundamental to how we understand ourselves and how we want the world to understand us. Variation or diversity in the application of a term is natural within any group. As long as at its core the debate and discussion is that difference is good.

    In all honesty, i won’t be happy until the only label I need is Sarah (or Dr Squirrel 🐿 ) thats when we will know as a movement we have really achieved parity.

  5. Astrid 4 months ago

    Thank you for this wonderful comment, which picks up do many thoughts and issues.
    I live in Paris/ France, where neurodiversity is still highly stigma-laden despite of having a large part of population being part of this labeling.

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