Neurodivergent from what, exactly?

The word Neurodivergent begs the question, "Divergent from what, exactly?".

Neurodivergent 1  describes the significant percentage of  humans who are increasingly recognized as differing cognitively from Neurotypicality.

The adjective neurotypical itself emerged from the Autistic Self-Advocacy movement of the late 20th century. Pioneers of the movement used it to bypass the increasingly problematic term "Normal", while essentially pointing to the concept behind it. It's worth pointing out that the word "neurotypical" should not be read as a diagnostic term, i.e. one that has a specific set of signs and symptoms. It is purely a term developed to provide a necessary polar opposite of "neurodivergent".

Neither should the recently coined words based on the concept of  Neurodiversity be read as scientific terms. They are socially constructed terms intended for advocacy purposes.  This should clear up criticisms that these words are "pseudoscientific". When I first used the word "Neurodiversity", I did not intend it to be a diagnostic term.  I saw it as a banner for a "Neurodiversity Movement" -  a civil rights movement for those of us who had been stigmatized for being "weird, odd, or unfathomable" outsiders. While the word is not scientific, it does trade on the authority of neuroscience and biological science - which stresses the importance of conserving biodiversity -  to argue for a revaluing of formerly stigmatized neuroMinorities 

From my thesis, a summary of ideas from

Lennard Davis, Enforcing Normalcy

Normality is a culturally constructed term  which encompasses a broad range of characteristics that centre around a rarely-achieved Ideal of physical, intellectual and sociable characteristics.

The Ideal itself is undoubtedly based on evolutionary principles, but to some extent can be culturally defined; e.g some cultures value extroversion, others, introversion.

The boundaries of the normal range are fuzzy, and subject to contention. Small deviations from the normal range are often claimed as Identities. Large deviations are viewed as Disabilities. The boundary line between an identity and a disability is fuzzy, and will always be subject to disputation.

Why do we need NeuroDivergent? What's wrong with Neurodiverse?

The adjective neurodivergent became necessary because the adjective neurodiverse is not logically meaningful. Neurodiversity has been a property of the biosphere since the evolution of sexual reproduction. It simply says that all human minds on the planet are necessarily different.

So all humans are neurodiverse!

It's just that some of us have been excluded more than others for our divergence from the ideal.

Neurodiversity is a fact. The Neurodiversity Movement is however an identity politics vehicle for people who were discriminated against for differing from the culturally-defined normal range.

There are degrees of difference of course. Thus "neurodivergence" shades from difference to disability, with a grey area in between.

Our Western free-market liberal culture tends to favour extroversion, sociability, competitiveness, self-promotion, lots of noise and buzz. We also tend to worship youth and fear and shun old age.

Other cultures favour introversion, introspection, quietness, modesty, and tend to respect age. Think traditional Chinese, Jewish and Indigenous cultures.

The latter cultures are eye-contact avoidant in various circumstances, considering it variously disrespectful of status, invasive or manipulative.  From the point of view of egalitarianism, this is a good thing. 

But rather naively, Western culture demands eye-contact as a verification of sincerity, when in fact it can easily be used as a tool of emotional manipulation by psychopaths and con-artists!

Cultures change all the time of course. Not so long ago, absent-minded professors were honoured in our culture, though perhaps we laughed at their eccentricities behind their backs. Then along came Dr Lorna Wing and Uta Frith. Before long, we could easily find our professors' eccentricities dissected in the pages of the DSM IV Bible of Everything that could Possibly Be Wrong with the Human Mind.

And yet, from an evolutionary view, we have an expectation of a range of normal behaviours, based on our primeval survival needs as Homo Sapiens emerging from the African savanna.

We evolved as a dominant hierarchical species, and our responses are still primed for survival in the wild, with high general levels of physical fitness, problem-solving and sociability.

But do our advanced cultures still need the same "hard-wired" qualities for survival?   

The Neurodiversity Movement challenges the notion that we must all be generalists to survive. Neurodivergent people are often specialists with spiky ability profiles. The biological reality is that as a species,  our success has been based on the evolutionary imperative of role differentiation.

Now read on for my reductionist, totally un-academic,  Armchair Evolutionary Pschologist's  take on  "The Normal"

Exit JS stage right, pursued by a Saber-Toothed Tiger
Click below to see how it turned out 

Acknowledgments

The coinage of the term "neurodivergent" is attributed to Kassiane Asasumasu

Is "Paid-Employedness" the new “Next to Godliness”?

"Absolutely Yes!" seems to be the answer in a society desperately searching for meaning, since the fading of our most recent religious fad, the quest for the Holy Grail of Wellness. Disapointingly,  the Rapture didn’t happen despite our purchases of sacred crystals, regular donations to the vitamin pill industry in the hope of miracles, pilgrimages to the mystic East, daily yogic contortions and kale, kale and more kale.

Being in possession of paid work is now an even bigger measure of virtue than doing good works for the glory of God with no thought of remuneration. Sure, as a volunteer, you might get some lip-service and some Christmas Party sandwiches from whoever gained the benefit of your unpaid work.

But caring not a fig, the tabloids will still vilify you as bludgers, scroungers and leaners. Thus justified, your government will then cut your benefits to the bone again, and you can go drop dead in a back alley for all anyone cares.

Don't get me wrong. I'm not advocating a U-turn to the good old days of obeiscence to Iron Age Deities and their occasional Female Personal Assistants.

But can we all remember that our current economic system (I dare not mention the C-Word lest some troglodyte throwback still fighting the Cold War accuses me of being a Communist).  So, can we remember that one of the well-documented origins of said C-ist system as it emerged in Europe, lies in the Protestant Work Ethic: work hard for the glory of the Big CEO in the Sky, with no expectation of earthly reward.

And BTW, John Wesley’s original 18th century dictum “Cleanliness is Next to Godliness” was resurrected to sell soap in the 19th. There's a moral in that.

And thus was the enormous productivity and creativity of Cap***ism unleashed, for both Good and Evil.

For those hoping to find a Red under my Bed, having long out-aged my radical youth, I have concluded that Western Capitalism is as good as society ever got, despite its current decline and imminent fall 😢

But couldn't we instead capitalize on our successes? We have freedoms barely dreamt of in the pre-capitalist world. Despite capitalisms flaws, we have amazing advances in science and public health, growing acceptance of gender diversity, legal protections for ethnic minorities, freedom of movement and information,  and more.

So can't we instead pull back from the brink of self-destruction as out planet drowns, freezes and burns from our our over-productive excesses?

And so, to my point...

No.  The possession of paid work is not the hallmark of moral virtue. Nor is the pinnacle of happiness to be found in working for the profit of others.

Meanwhile there's plenty of evidence that a significant proportion of depression, despair and suicide is a direct result of the injuries of poverty exacerbated by our punitive so-called “welfare” systems.

What could be more depressing to the human spirit then to be press-ganged by the whip hand of punitive "welfare" systems into meaningless jobs creating junky consumer baubles and destroying the planet in the process?

Actual happiness comes from:

• integration into a social network engaged in working collaboratively and co-operatively towards the common good
• being respected for your contribution
• not being stigmatized or shamed for being unemployed in a society that worships full employment
• being adequately remunerated in work 
• having your basic needs met adequately if not able to work
• having a healthy work-life balance and more...

Have you actually SEEN the conditions under which the vast majority still toil?

I note the huge numbers of Neurodiversity Employment Services, both public and private sector, touting their services in hot pursuit of the Holy Grail of Employment. Many are doing great work, and beginning to influence hiring processes to be more aware of the benefits of a neurodiverse workforce. At the same time, where there is profit to be made, there will be exploiters.

As with all new growth industry, first come the creatives, the innovators, the idealists, the people of good faith. Then come the “Cowboys”. Eventually must come the regulators, if there is a government on the side of the people, not the profits.

I notice that some agencies who specialise in autism seem to be muscling into the lucrative IT market, cherrypicking the IT whizzkids and ignoring the rest. There have always been plenty of “ Geeks” in IT, way before the penny dropped that Geeks and Aspies were pretty much the same thing. I should know. I was one of them as far back as the 1970s - female version. Case in point: the glossy brochure of one recent entrant to the Australian market shows happy smiling Aspies in IT jobs. They were all male, with maybe one exception. Says a lot, dont you think?

What the Neurodiversity movement legitimately pursues is recognition and accommodation of the specific abilities and support needs of neurodivergent individuals. But at the same time, we should see beyond the mindset that the possession of a paid job is the measure of all virtue, and the fount of happiness. We and the whole of society would benefit from:

• shorter working hours and more flexible conditions for ALL people who work 
• a LIVABLE social wage for those who can't work, and, yes, even for those few who don't want to. It's not as if there were even enough jobs for those who want them. And even the most ideally "neurodesirable" worker is generally working too many hours for too little pay.
• fallow time for those who need time to discover their talents or heal from illness or trauma
• more pay and better conditions for human services workers, nurses, teachers, social worker to help them do it

The  Neurodiversity Movement arose from the resistance of neurominority activists to their  exclusion from employment, health, and education etc

But if the movement is fully understood and used properly, it will find itself humanizing the working conditions of all humans, and providing an adequate standard of living for all, not just those with inherited wealth, paid employment, or entrepreneurial abilities.

Finally let me employ Godwin's law to ruin your day

This was written on the gate to the hell-hole of Auschwitz

"Work makes you free"

It didn't then, rarely does now, and probably never will.

Results of my Twitter poll on "the prime cause of disability"

This twitter poll was my experimental response to critics of Neurodiversity who paint it as a movement of people who want to deny the reality of disability as a medical condition.
My assumption was that though the poll is rough and ready, as most of my twitter followers are pro-Neurodiversity it would be a reasonable measure of how they think about this question

The Poll Question and Final Results

Explaining the subtext

• By "this is horribly simplistic" I signified that I am aware that this is not a scientifically valid poll.  
• And by  "purists", I meant social model or medical model fundamentalists. 

Why didn't I say so? Because if I had, respondents would have got tangled up in defensiveness and would have dragged me into increasingly arcane academic theorizing in the totally unsuitable twitter medium. 

I wanted to elicit gut reactions. 

• I also suspect that many of those who did choose Option 1.  "a medical condition" were Neurodiversity critics. 

Being neurodivergent myself, I have never found even the most rigorously scientifically designed profilers satisfactory. They invariably feel like "Nothing, nothing about my complicated case!". 

That is why I prefer qualitative to quantitative methods. Too often, profilers actually create reality rather than sample it. I always sense a subtext that subliminally informs us of the latest view of normality they measure difference from.

Then again,  I must admit that these tests can flush out some very broad trends. As it happens I just tried out Amanda Kirby's Neurodiversity Profiler app, and though I found the process agonizing given my pedantic nature, it actually gave me results that matched what I already knew about myself. 

So finally let me apologize to everyone that I have tormented into feeling torn between the importance of having a voice, versus having to suppress their much more nuanced and complex thoughts to do it

So I think the results here are valuable, but please make up your own mind. 

 

Acknowledging the dark side of Neurodiversity: the sociability spectrum

If the "Neurodiversity Movement" is to mature and be taken seriously, it must acknowledge that neurodiversity includes all humans, including those with extreme anti-social conditions

Perhaps it’s time we recognized there is also a Sociability Spectrum: ranging though sociable, asocial, anti-social

I am referring to what psychologists call the Dark Tetrad: Psychopathy, Narcissism, Machiavellianism, and Sadism

These personality traits are considered to have substantial genetic components. One thing is sure, these conditions can't all be the fault of bad parenting, trauma or societal barriers

While the neurodiversity movement grew out of the pioneering Autism Self-Advocacy Movement, Autistics were already acknowledging what they called "Autistics and Cousins" though I don't remember  this going much beyond ADD and dyslexia. But the question of hereditary anti-social traits could not be completely swept under the carpet even then:

Autistic villains have been identified too, but out of a desire to avoid further stigmatization, autistics tend to play them down. AS people are beginning to debate and formulate a response to the linking of certain types of crime with “loners”, and to argue that simplistic conflations of good/evil with certain varieties of disability cannot be made.

Neurodiversity: the birth of an idea (p24)

I think the time has come now that autism has enough recognition, acceptance and sympathy that we can debate these matters openly.

In no way does the reality that there is a human spectrum of social, asocial, and anti-social behaviour undermine the significance of the Neurodiversity Movement.

While Neurodiversity is the indisputable fact that no two minds are alike, the Neurodiversity Movement is the first global movement to address this reality from a social justice perspective.

Like any movement, the movement may attract a few fringe elements who want to see Neurodiversity either through rose tinted glasses or through the darkest of glasses.

But the sensible mainstream movement simply seeks

• a re-evaluation of the strengths and weaknesses of all Neurological Minorities who have been marginalized by purely negative views of human divergence, and
• greater emphasis on acceptance and inclusion to the greatest extent possible
• and for the support needs of all to be met, whatever the degree of disability

Neurodiversity, being a biological descriptor of all humanity, is amoral. But human society must be moral and ethical to be sustainable. .

Those who are socially responsible must always strive to include those who are asocial, reform those who are anti-social, and for those who cannot be reformed, we have a criminal justice system.

Oddly enough, we still have a society that seems to reward psychopaths, narcissists and machiavellians with high office and wealth.

Perhaps greater Neurodiversity awareness will cause educate the public to recognize such people and cease rewarding their behaviours

But that is another story...

Satire 1998: NT Social Skills Deficiencies : a case study

I wrote the piece below, a send-up of exploitative research practices,  in 1998 for Muskie's Website, Institute for the Study of the Neurologically Typical (ISNT).  It has since disappeared from the internet, but has fortunately been conserved by one Eric Engdahl.

This piece does not necessarily reflect my current views

NT Social Skills Deficiencies: A Case Study

Below is a prototype of an NT-afflicted researcher's request, inspired by a recent example posted to a mailing list:

URGENT NOTICE TO LIST MEMBERS!

Facsimile of my
original article

I am a post-graduate at X University, and I'm in a hurry to find a hot new research topic so that I can impress my peers and professors, and move on to a brilliant career managing people just like you.

I discovered your fascinating disability through the family of a cousin of a friend of a friend. I am deeply moved by the plight of all you unfortunates, and I am determined that your situation should be brought to the notice of every relevant government authority, health professional and psychotherapist in need of extra funding or a new specialty.

You will not be troubled with all the details of the purposes of my research, and you may rest assured that you will never hear from me again once I've finished extracting your information.

Please take a few hours to fill in as fully as you can:

1. What is wrong with your child?
2. List all his/her problem behaviours since infancy
3. List all the ways in which you are unable to cope as a parent
4. Include here a review of any literature that you have found useful to be included in my bibliography.

In order to be allowed to participate in this research, you will be expected to make your child available for extensive blood tests, genetic tests, IQ tests, and personality tests.

Naturally we need to be certain that your child is a bona-fide sufferer from this disability, and we will be scrutinising you carefully for signs of abusive parenting and Munchhausen syndrome.

You will be notified as to when to present yourself at our clinic.

Thanking you in advance etc

-Judy Singer, jsinger @ acs.itd.uts.edu.au 

NB: 

• while the ISNT website appears to be defunct, the facsimile can be viewed here. 
• The claim that ISNT owns the copyright to my piece is erroneous. As the author, I am the copyright holder.
• the above email address has long disappeared. It was my original email in 1998 while I was writing my sociology honours thesis

Satire 1998: What to do if you suspect your child has Neurotypical Disorder

I wrote this in 1998 for Muskie's Website, ISNT, Institute for the Study of the Neurologically Typical. It has since disappeared from the internet, but has fortunately been conserved by one Eric Engdahl.

This does not reflect my current views. 

Facsimile of
original article

What to do if you suspect your child has NT

First, don't panic!

Nowadays due to diagnostic advances, early intervention and carefully tailored behavioural management techniques, there is no reason why your child can not grow into an independent social being, develop a TOOM (Theory of Other Minds), and in time, even develop some special interests and abilities to contribute to society.

While Medical Science currently holds out little hope for any great improvements in perceptual abilities such as hearing acuity, touch sensitivity, etc, it is still possible for NT children to enjoy the limited senses that they do have.

Rote drills such as Applied Behaviour Analysis with their easily understood regimen of repetitiveness and punishment will do wonders with common NT behaviours such as lying, teasing and faddishness.

AS scientists are currently working on a new range of wonder-drugs - Swarming Inhibitors (SI's) which it is hoped will prevent some of the more anti-social manifestations of NT such as a tendency to congregate in mobs, engage in vicious group character assassinations of outsiders, and in the extreme case to actually incite each other to mass acts of violence and destruction such as wars, pogroms, lynch mobs and the like.

-Judy Singer, jsinger @ acs.itd.uts.edu.au 

NB: 

• while the ISNT website appears to be defunct, the facsimile can be viewed here. 
• The claim that ISNT owns the copyright to my piece is erroneous. As the author, I am the copyright holder.
• the above email address has long disappeared. It was my original email in 1998 while I was writing my sociology honours thesis

BTW, my understanding of copyright law is that the copyright is mine as the author, not ISNT's

Does Neurodiversity mean never having to say you're sorry?

Yesterday I posted this admittedly provocative question on Twitter:

Does Neurodiversity mean never having to say you’re sorry?A World Cafe topic I suggested for the Genius Within may sound facetious but takes some unpacking. Cd lead to lively discussion

WARNING!

What follows is a self-indulgent tour around my brain. 

To jump to more philosophical reflections, jump to 

So, finally! 

Oh, you're still here ...

Being impulsive*, I wasn't quite sure what I meant.
And being oppositional, I was somewhat conscious that I was being provocative and about to anger people left, right and centre.

So, I'm sorry.

OTOH, being Neurodivergent, I could rephrase that as :
Being a creative risk-taking brainstormer, I put it "out there" being confident that interesting results always follow if you make a bold move.
Being an innate devotee of the Socratic method (was Socrates an early Aspie?) I am more interested in the pursuit of truth than popularity,

So I'm not really sorry.

I have just learned to "mask" for the sake of not being totally ostracized.

And besides, I'm actually Autistic in the original etymological meaning of the word, i.e. absorbed in myself and my inner processes. Not to be mistaken for the hashtagged #ActuallyAutistic, which I have come to dislike for reasons explained earlier in this blog

Then again, I am sorry ...

because I know I bore people with my single-mindedness about my inner processes, and I am always ... well, sometimes ... apologizing and asking - "Am I boring you? Please stop me if I'm going on too much"

But then I'm not really sorry, 

because if I wasn't a creative and oppositional seeker of truth in the teeth of the conventional wisdom of disability studies in the 90s and its social constructionist fundamentalism I would not have had the determination to forge ahead with the concept of a Neurodiversity Movement, which some of you say has changed your lives.

"For the worse!" I hear some cry.

I'm not sorry about that either. 

It was in the Zeitgeist anyway. I was just the unlucky person who happened to be positioned with the right mindset in the right period of history in the right geographical location in the right academic discipline to channel what was already out there.

So finally!

It's a question that humanity have been debating since recorded history and well before.

Free will vs Determinism

The problems of evil

We're not going to resolve it in 240 chars on Twitter

Not even in a blog post

But it's a fascinating pastime to try. 

NeuroWars??? What NeuroWars?

There are no NeuroWars as far as I can see.

There are however, fringe skirmishes in the borderlands.

On the one extreme, we have a handful of “Rainbow People”  who,  it seems to me, want to define “Autism” as whatever it is that they like about themselves. And who want to expunge the word “severe” from the lexicon.

Rising up against them in inevitable reaction, come a handful of "Angry Young Men" (OK, not all men, and maybe not all young, but I couldn't think of a better phrase) who storm against the idea of Neurodiversity. Again, just my perception, they seem to want to leverage the real hardships associated with autism for their own emotional need for recognition. 

Each feels silenced by the other. But they are both factions of the Neurodiversity Movement whether they like it or not, part of the evolving dialogue.

Although both have sides have given me a hard time, I am grateful to them because they define the boundaries of the discourse and help me to critically examine, refine and clarify my thinking.

We all need recognition. Most of us have suffered exclusion,  humiliation and disadvantage as a result of our misunderestimated (sic)* neurodivergent traits.

It's not surprising that our coping mechanisms range from rainbow-washing to storming. But...

There can be no rainbows without storms

nor light without dark

Most of us occupy the centre

We simply want more understanding, acceptance and accommodation of
the absolute wonder that is human diversity.

Both sides imagine they are fighting for a bigger share of the same small piece of pie.

That pie is imaginary, folks!

Our Western nations are actually immensely wealthy, creative and adaptive. There is enough for everyone as long as everyone gets a fair share.

We can work together to add more ingredients and make
a Bigger and Better Pie!

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

 * Misunderestimate (v): to underestimate someone because you misperceive them

What a fabulous word! 

As a lover of neologisms, I reckon this perfectly sums up how neurodivergent people have been viewed for far too long. Without a doubt, George W. Bush's greatest contribution to posterity. 

Why I don't identify as #ActuallyAutistic

I have an official diagnosis of Asperger's Syndrome

3 generations

But I don’t identify as #ActuallyAutistic 

I have described myself as being “in the middle of three generations of women somewhere on the Autistic Spectrum”


This is as much as I will commit to, as I don't want to be pigeonholed into any particular views


I find that #ActuallyAutistic lacks both the specificity and the authority that the word "Actually" implies


I'll leave it at that for now, but hope to learn more when I get to the UK


I am aware that the word "Actually" may have different connotations for Britons than it does for Australians.


But here is how I described myself in my thesis, "Odd People In" in which I used the word Neurodiversity for the first time. 


There is one sentence in particular that I have redacted and wish I hadn't written.  I intended to be ironic, but its raw bitterness does show that I never thought autism was the benign difference some want to make it out to be.

Situating myself (p22, Odd People In)

My answer is complex:

·      A locus of the historical forces of ethnicity, class, disability, and gender of course.

·      A partial self, always in the act of inventing itself.

·      A moving point on a sliding scale between free will and neurological determinism, between essentialism and social constructionism.

·      The daughter of a woman with Asperger’s syndrome.

·      The mother of a daughter with Asperger’s syndrome.

·      “Somewhere on the spectrum” myself, somewhere between low-functioning normate under-achiever, and high-functioning autistic survivor-against-impossible-odds.  And a bemused observer fascinated with this latest classificatory schema imposed on an infinitely complex reality.

·      Deeply ambivalent as I live out the contradiction between feeling the victim of my mother’s deficit, and yet wanting to be the protector of my daughter’s right to difference. A contradiction that doesn’t automatically lead to an altruistic politics. 

·      Deeply ambivalent as I live out the contradiction between feeling the victim of my mother’s deficit, and yet wanting to be the protector of my daughter’s right to difference*. A contradiction that doesn’t automatically lead to an altruistic politics. XXX XX XXXXX XXXXXXX XX XXX XXXXXXX XXX XXXXXXXXXXXX XXXXX XXXX XXX XX XX X XXX XXXXX.

·      Somewhere between a divine spark embedded in universe full of meaning and purpose, and a biological machine, engineered by the purposeless but necessary operations of physical laws.

---

*   The autobiographical chapter following should make this point more understandable

Video greetings to Montreal Neurodiversité book launch

My greetings from Sydney to the Montreal Neurodiversité Collectif's launch of their book Neurodiversity: 20th Anniversary of the birth of the concept

My first attempt at making a video!

The book is collection of essays by the speakers at their 2018 conference celebrating that anniversary. It features an introduction by Steve Silberman, author of Neurotribes, and chapters by Joel Monzée, Josef Schovanec, Melanie Ouimet and myself.

My chapter in the book is titled Reflections on the NeuroDiversity Movement 20 years on

You can order either French or English versions of the book at https://etsy.com/ca-fr/listing/701221413/neurodiversity-20th-anniversary-of-the?ref=shop_home_active_4&frs=1

Pre-order English copies of La NeuroDiversité book

 

Congrats to Melanie, Alexandre, Lucille, Matthieu and the rest of the Montreal-based La NeuroDiversité Collectif for the launch of this collection!

Pre-order

The book is available in both French and English and features essays by speakers at the Montreal World Neurodiversity Day Conference 2018 celebrating the 20th Anniversary of the birth of the concept.

The book includes an introduction by Steve Silberman and my chapter Refections on the Neurodiversity Movement 20 years on, amongst articles by prominent francophone autism advocates.
 

Can't wait to read the other writers in English! My Franglais was not up to the task of following their presentations.