Just as the term biodiversity was primarily devised for political ends (to advocate for conservation of all species, since a high level of biodiversity is considered desirable and necessary for a thriving ecosystem), so too of neurodiversity. Widely credited as first being coined, as a term, by Judy Singer, an Australian sociologist, in 1997, neurodiversity advocates adopted its principles to argue the benefits of society recognising strengths in neurodiversity, rather than pathologising perceived weaknesses in divergent brain function.
As far as academia and peer review goes, developing the first research-based publication of the term in 1999, following on from work on a sociological thesis which synthesised first person experience, in the middle of three generations of people ‘somewhere on the autistic spectrum’, with critical disability studies, Singer both first coined the term and acknowledged an emerging paradigm of understanding around it. In the decades since publication, the term and philosophy of difference, not deficiency, has become inclusive of a wider range of conditions, diagnoses and identities, becoming a grass roots, politicised movement.
As this movement has developed further, the disparity between language used and assumptions made by psychological, neurological (and more generally medical) professionals, researchers or academics and the lived experience of ‘stakeholders’ has led to dissent both within and between these groups.
Educo-psychological and psychiatric debates involve subjects like co-morbidity and difficulty distinguishing between conditions. There is some controversy around the ‘correct’ approach to differential diagnoses, given that these are ‘of exclusion’, in which there are no objective, clear measures of assessment.
Agency to act against exclusion, in diagnoses and in wider societal terms, is comprised of layers in intersectionality. This includes race, gender, sexual orientation, class and verbal or written skills. Understanding the discourse is essential to understanding neurodiversity. Moving fluidly between developing concepts in both medical and social models appears fundamental to understanding the functional needs of individuals as societal facilitation.
Equally fundamental to this, there is an emerging paradigm, for psychologists and educators, with correlation in neuroscience, which positions neurodiversity ‘within-individuals’, rather than ‘between-individuals’. Psychologically, this refers to diversity within individual cognitive ability, wherein there are statistically significant disparities between peaks and troughs of assessment. This is known as a ‘spiky profile’.
A ‘neurotypical’ is someone whose cognitive scores fall within one or two standard deviations, forming a relatively flat profile. Neurotypicality illustrates a numerical difference from scores which cross two or more standard deviations from this distribution.
‘Spiky profiles’ have historically been grouped under umbrella terms. Wider societal, politicised critiques of prevalent use of deficit highlighting, in nomenclature, are leading to changes, via revision of language, in clinical practice.
Usage of neurodiversity, as an umbrella term, became increasingly commonplace among educational psychologists in the mid to late 2000’s and in occupational psychology throughout the 2010s. In general, in psychological research and literature, autism, ADHD, DCD and dyslexia became the conditions most frequently referred to by it. Some terms of reference began to include other conditions, such as depression and anxiety, general learning disability, dyscalculia, dysgraphia, acquired brain injury and Tourette syndrome, blurring some distinctions between neurological and psychological diagnoses, drawing upon distinctions of application in ‘within’ or ‘between’ models or profiles.
Crucial distinctions also emerged between diagnoses of conditions that are ‘applied and developmental’, ‘clinical and developmental’, ‘acquired and transient’ or ‘acquired and chronic’. Also critical to these are treatment and medication considered or prescribed.
Pathological neurodivergent conditions have historically been identified and named as ‘products’ of wider societal evolution, contextualised within normative educational history. Dyslexia is ‘discovered’ around the same time as literacy becomes normalised through education; ADHD becomes more ‘prevalent’ as sedentary lifestyles increase post Industrial Revolution; autism diagnoses increase in-line with frequency of changes in social communication and sensory stimulation; DCD appears more common as a need for motor control of complex tools and machinery or technology develops societally.
The evolutionary critique of neurodevelopmental ‘disorders’, in these senses, becomes that their perceived pathology is related to wider, developing, societal norms. These are frequently not what is considered ‘normal’ development within the human species.
Although there are clear and distinct biological markers distinguishing a ‘spiky profile’, which lead to observable, measurable psychological differences, there is nothing innately disabling about them. This is particularly evident when considered in terms of evolutionary sociology or cultural anthropology, comparing ‘complex’ post-industrial societies with ‘tribal-based’ communities of humans.
Developing a biopsychological model of neurodiversity becomes fundamental to adjusting the ‘fit’ between person and environment. Critical review of extant biopsychological research supports the social model proposition that individuals are not disabled, but that the environment is disabling, or creates disabling circumstance.
‘Disability’ status becomes predicated not on diagnosis or pathologising a ‘condition’, but an assessment of functional impairment and the extent of inhibition and exclusion. A reductive, medical paradigm of research is incongruent with the societally disabling and legal status of ‘neurominorities’ in a majority of ‘developed’ countries, subscribing to the UN Statute and the Declaration on the Rights of Persons with Disabilities.
Whilst the Declaration acknowledges the evolving nature of disability, as it evolves conceptually, even its own nomenclature becomes problematic. Context may or may not ‘disable’ individually (‘disabled people’) and disability should not automatically be assigned on the basis of diagnosis (‘person with a disability’). This leads to wide, varied and distinct interpretations of legal protections afforded foundationally in becoming or being a signatory to the Declaration.
In terms of disability and exclusion, neurodiversity should not be used as a synonym for disability. At a functional level, there are observable similarities, in terms of presentation. Issues with executive functions are a common psychological complaint, often resulting in difficulties with short-term and working memory, attention regulation, planning, prioritising, organisation and time management. Self-regulation is required regarding these in many societal contexts, leading to ‘issues’ presenting as disabling.
There is also commonality among strengths, frequently related to higher order cognitive functions reliant on comprehension and creativity. Comparatively less study and fewer references in available literature appear to reflect a historical and changing research bias, which does not yet mirror a genuine or accurate representation of lived experience. This is particularly acute in regard to general observation of adjustments for disabling circumstance, as enabling practice for common neurodiverse strengths.
Societally, understanding neurodiversity is ‘coming of age’ and will begin to translate into public policy, especially in education and employment. Addressing historical bias, medical and social scientists are uniquely placed, given some funding priorities, to support more ambitious inclusion agendas through rigorous evaluative research.
You, yes you, in the white coats, or whatever the social science equivalent is (is it still sports jackets with elbow patches?) – whatever stereotype fits, you’ve applied them to us often enough historically, you can take them, just this once – get your bloody fingers out! And yes, I am counted, count myself among your ranks and am doing all I bloody well can, despite the lack of funding priorities in my particular fields, thank you very much.
Oh, and just one more thing… as something of a more up close and personal issue, within the grass roots, personal and politicised movement toward more societal understanding of neurodiversity and promoting enabling circumstance, not pathologising neurodivergence.
In response to critiques the neurodiversity paradigm is too widely encompassing and its conception should exclude those whose functioning is more severely impaired, autistic advocate Nick Walker suggests that neurodiversity refers specifically to ‘pervasive neurocognitive differences intimately related to the formation and constitution of the self, in contrast to medical conditions such as epilepsy’. This is classic overcorrection and way too subjectively specific, as well as emphasising lived experience of autism to the detriment of that of epilepsy.
As someone who is neurodivergent in at least two ways, being a refractory, high daily seizure frequency, fronto-parietal lobe epileptic and ‘high functioning’ autistic, I can categorically state the nature of my neurodivergence is more disabling societally due to systemic approaches to epilepsy than it by those to autism. Walker falls prey to the same approaches, stereotyping and excluding, promoting personal neurodivergence as categorical definition, to the exclusion of other, less understood, by Walker personally and as an aspect of a wider lack, divergence.
My epilepsy has been pathologised, like so many other epileptics, my brain poked and prodded, cognitively blunted as combinations of drugs failed to control or manage seizures. Over ten years of it, while also facing systemic discrimination - when legally you can be classed as a danger to yourself and others, try getting an employer or service provider to make reasonable adjustments. Try getting life and health insurance, or flying.
There’s enough to contend with, from almost every systemic angle, it doesn’t need more exclusion from neurodiversity advocates too. Whilst politics can be personal, it also needs common cause, solidarity, sisters, brothers and non-binary kindred. And understanding where and who the fight should be brought to.
The only thing mitigating against societally excluding and disabling circumstance (with my ‘impairment’, diagnosed late in life, despite all signs being there from a very early age and all sorts of medicalised interventions, extended over way more time, way back when, in early and teenage developmental years, providing opportunity for it, following head trauma which exacerbated an underlying, undiagnosed ‘benign’ epilepsy present since birth, impacting every aspect of neurodevelopment), is self-regulation. Acknowledged now as refractory, resistant to anti seizure medication, not a candidate for surgery, the only means of regulating the societally generated sensory issues which lower seizure thresholds and raise frequency is an personally developed and applied system of cognitive load management (oh, you better believe there’s a whole other post coming on that!).
It wouldn’t be necessary if my functionality was more fully considered, if the full range of epilepsy, which is not homogenous, and disabling circumstance affecting it was better understood societally. And yes, that means you too Walker!
For centuries now, epileptics have been test subjects for disproportionately ground breaking insights into brain function and development. Proverbial canaries in the coal mine, all while facing persistent equally disproportionate discrimination, exclusion and othering. Don’t whip our hard-earned seat at the table from under us, it’s just cruel.
A full third of epileptics are refractory. Meaning they live, every day, not only with repeated irregular electrical discharges across their brains, typifying seizures, but also with interictal activity between them. That’s the ‘ripple out’ of electricity, across synapses, which persistently, alongside seizures themselves, impacts cognitive function and disproportionately skews mental health negatively, compounded by systemic societal discrimination and exclusion.
What could more typify neurodivergence? Or could be a more pervasive neurocognitive difference intimately related to the formation and constitution of self? And check them spiky profiles too!
Despite the negatives, when enabled and understood, the very things which can be disabling, can become strengths. I never see things more differently, more divergently than immediately post ictal. Higher cognitive function works more acutely, is sharper, more focussed, funnier, to me and those around me, even if the rest of my body protests, aches, has been injured.
A root epileptiform in Broca’s Area may cause some interpersonal communication issues, at times, but it has also made me more perceptive regarding language and semiotics, signs, signifiers, what they mean, how they are used. As well as making me more adept at learning and applying new language, both in terms of learning languages, culturally, and terminology or nomenclature.
It all informs my academic work, gives me insights I could never arrive at any other way, makes change. It makes me more consistently creative too.
So, please, remove the mote fae yer ain e’e afore ye pathologise me.