Janine Booth replies to John Cromby and Lucy Johnstone’s post, Neurodiversity – what exactly does it mean?, on Mad in the UK’s website.
Throwing the neurodivergent baby out with the bathwater
John Cromby and Lucy Johnstone have contributed an interesting piece about neurodiversity. But while it is articulate and makes a few good points, I disagree with its basic argument.
Their argument is not new, and has much in common with the backlash against neurodiversity that has developed alongside its popularity (More on this here). Neurodiversity scholars and activists have extensively explored their concerns.
To diagnose or not to diagnose?
John and Lucy rightly point out that different neurodiversity advocates take different views, and highlight that, “Some align neurodiversity with the critique of diagnosis and see it as offering a new, non-medical and non-pathologising way forward. Others strongly support diagnostic labels, and argue that professional diagnoses of autism, ADHD and so on should be more readily available.”
However, these two positions are not counterposed. Some people argue for more readily-accessible assessments because that is very helpful in current society, assisting people to get understanding, self-knowledge, adjustments, welfare benefits and services, even medication. But they can, and do, simultaneously challenge the pathologising nature of diagnosis, promoting the neurodiversity approach, questioning diagnostic labels and criteria, and preferring terms such as ‘identification’ to ‘diagnosis’.
As an aside, I prefer the term ‘self-identify’ to ‘self-diagnose’. Doctors diagnose, and if you are not using a formal diagnosis then why not use a less pathologising term than ‘diagnosis’?
The authors also point out that “Any meaning of neurodivergence will change over time because social norms change over time.” Well yes, but what is the problem with that? Aren’t we trying to change (or even abolish) social norms? An approach that identifies neurodivergence, and how it relates to changing social norms, helps us to judge those norms and the harm they may cause.
Neurodivergence is a political term, not a medical one. No-one is diagnosed as ‘neurodivergent’. They are diagnosed with a specific condition, which may or may not be considered divergent, depending on the social context. Similarly, the meaning of ‘ethnic minority’ is different in different places and at different times, according to which ethnicities are in the minority.
To the left and the right?
Lucy and John assert that, “neurodiversity appears to be equally acceptable to left-wing campaigners for social justice, and to right-wing politicians and parties, multi-national corporations and government officials. The ease with which neurodiversity is accepted across the entire political landscape clearly signals that there is nothing intrinsically radical or liberatory about the concept.”
Yes, there is a widespread fandom for neurodiversity, across right and left. You could say the same about human rights, freedom, anti-racism, women’s equality, and other matters. I am not sure that any concept is intrinsically radical or liberatory: what determines their radical content is the context in which people and movements apply them.
A left-wing acceptance of neurodiversity is very – even fundamentally – different from a right-wing acceptance. The latter see it as a way of fine-tuning capitalism’s exploitation of human minds, the former as a struggle against oppression. The phenomenon of ‘everyone embracing neurodiversity’ is not a reason to dismiss the concept, but a very good reason for left-wingers to develop and fight for a distinct, liberatory understanding of neurodiversity.
The great expansion?
Over recent years, diagnoses of various minority neurotypes have risen significantly. A reactionary, pity-mongering, charity model presents the increase in diagnoses of autism as meaning that autism itself is increasing. They argue that it is an ‘epidemic’ that must be tackled and defeated. Typical of this strand is US charity Autism Speaks, which in 2014 released a documentary titled, ‘Sounding the Alarm: Battling the Autism Epidemic.’
Others point out that, in contrast, diagnoses have increased partly because diagnostic criteria have widened. Formal diagnostic criteria for autism first appeared in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) in 1980. Further versions of the DSM in 1987, 1994, 2000 and 2013 broadened those criteria, including changing the required age of onset and the number of ‘symptoms’ needed for diagnosis.
John and Lucy, apparently supporting this explanation of the rise in diagnoses, make two points. First, they argue that this broadening “was deliberate, and took place after lobbying by advocates in the USA, who see a lifelong diagnosis as the key to healthcare and disability legal protections.” We can surely understand why those advocates would do that in a US political and economic system where support is only available at a price.
Second, they point out that “Private clinics sprang up, offering diagnostic assessments and promising a fast track to the help you need, which they promise will be facilitated by a diagnosis.” Of course they did: capitalism does not miss a chance to make profits.
Neither of these two points means that expansionism is inherently wrong, especially when most neurodiversity advocates are arguing for acceptance and accommodations rather than for increased medicalisation. If society is finding out that more people have an atypical neurology than previously thought, that is only a problem if you think that having an atypical neurology is a problem.
I would argue that there are also other factors contributing to the rise in diagnoses. Positive factors driving the rise include increasing awareness of neurodivergence and more favourable presentations of minority neurotypes. More negatively, increased social pressure and sensory distress have brought about more mental ill-health in neurodivergent people and have driven more to seek diagnosis.
Reductio ad absurdum?
The post bemoans that neurodivergence “now includes almost every human behaviour and experience, plus its opposite. … signs of neurodivergence are said to include not concentrating, or being over-focused; talking too much, or too little; oversharing, or undersharing; difficulty in switching tasks, or inability to stick to one; making eye contact too often or too infrequently; being particularly sensitive or insensitive; drinking alcohol rarely, or too much; being seen as glamorous and composed, or odd and chaotic; losing jobs regularly, or keeping them for decades; being high or low achieving; having a strong interest in football and indie bands, or an aversion to popular culture; over-apologising, or being rude and not caring what people think; keeping the same hair colour and style for years, or changing it every month; and so on.”
This reads like an attempt to make neurodiversity look absurd, but it is not absurd for a concept of divergence to include things and their opposites: we surely expect any concept of divergence to include things that differ from each other not just from the ‘norm’. A person of atypical height could be either unusually tall or unusually short. A child with ‘special needs’ could have opposite needs to another child with special needs: for example, a deaf child needing visual learning materials, and a blind child needing audio learning materials.
The key thing about these pairs is not their oppositeness, but what they have in common – they are atypical, ‘not normal’. A person who talks ‘too much’ and a person who talks ‘too little’ may have ‘opposite’ traits, but they may also have a common experience of being reprimanded, mocked or excluded socially.
The post seems equally contemptuous of the “whole new terminology to describe what were previously seen as unremarkable behaviours: fiddling with your hair is now ‘stimming’; disliking loud music is a ‘sensory sensitivity’; losing your temper may be a case of ‘autistic meltdown’; upset at the end of a relationship is ‘rejection sensitivity dysphoria’; difficulty keeping up with daily tasks is ‘pathological demand avoidance’.”
The authors do not explain what is wrong with a young movement coining new terms. Perhaps the objection is that these terms pathologise ‘unremarkable behaviours’. But naming a neurocognitive trait – such as a sensory sensitivity – does not have to mean casting it as an impairment to be medicated. On the contrary, some of these terms are used as part of the effort to persuade society to accept the behaviour. If we recognise stimming as a strategy employed by many neurodivergent people to regulate their inputs and emotions, then we are not saying that it is a flaw, but a personal habit to be accepted rather than suppressed or ridiculed. Neurodivergent people use various forms of stimming: the authors pick on one, fiddling with your hair, that appears trivial, without even considering why someone might do this and the consequences for them if they are prevented from doing it.
The authors’ argument also trivialises some of the more distressing experiences it refers to. Rejection sensitivity disorder (RSD) is a lot more than being “upset” – it is an unbearable, all-consuming emotional pain. An autistic meltdown is not the same as “losing your temper”. Sensory sensitivity is more than “disliking” a particular sensory input. If we name these things, that helps people to identify coping strategies – be that avoiding certain situations or
using devices such as noise-cancelling headphones or sunglasses.
The authors’ argument here seems to echoes the Conservative party’s narrative during the recent general election campaign that attention to mental health pathologises the difficulties of everyday life – perhaps we should just ‘man up’?
I agree with the authors that it is important to avoid pathologising harmless but eccentric behaviours. But you can avoid pathologising them without having to minimise them or mock the idea of naming them. There is nothing wrong with calling fiddling with your hair ‘stimming’ unless you think there is something wrong with stimming; nothing wrong with identifying an unusual level of sensitivity to a particular sensory input unless you think there is something wrong with being unusual.
The article adds a list of neurodivergent celebrities, as though it is self-evidently absurd that successful people could be neurodivergent, or that neurodivergent people could be successful. It is not.
Excluding ‘severe autism’?
The post repeats a common backlash argument, often made by some parents of ‘severely autistic’ children, that the neurodiversity approach excludes them. Many neurodiversity advocates have rightly taken this concern seriously, and have addressed it. One example is the argument made by journalist Nick Cohen five years ago, which I examine here.
The risk of overlooking autistic people with high needs continues to be a legitimate area for discussion and a danger for neurodiversity advocates to consciously avoid.
‘Severe autism’ can mean various things: perhaps that a person has an intellectual impairment or serious medical condition as well as being autistic; perhaps that their sensory sensitivities are so different from the typical that they are in almost constant distress; perhaps that their means of communication and interaction are so divergent from typical people’s that those people think they hardly communicate or interact at all. It is probably more helpful to describe people in terms of their needs rather than the severity of their autism. More here.
The neurodiversity approach does not pretend that everyone has the same level of need; neither does it argue that every form of divergence is only difference, not impairment. If you catch anyone arguing this, or using neurodiversity as a cover for denying resources and support to people with high needs, then challenge them. But in reality, you will find that many of the people working hardest for a better deal for high-needs neurodivergent people are neurodiversity advocates.
I am not sure that I understand where Lucy and John stand on the issue of diagnosis. In some places they appear to challenge the concept so vigorously as to suggest that they oppose it. On the other hand, they try to use the ‘stick’ of (diagnosed) ‘severely autistic’ people to beat neurodiversity. Perhaps they could explain whether those diagnoses are OK but others are not, and if so, why.
Moreover, in a post that in parts stridently objects to the creation of divisions, the authors appear to be creating a division between autistic people, based on their ‘severity’.
The post refers to ‘two ends’ of the spectrum of neurodivergence, as though it were a straight line from ‘mild’ to ‘severe’. It is much more multi-dimensional than that. Imagine an autistic person who is academically brilliant, who can deliver fantastic lectures, but can not get up and get to those lectures without help, and who frequently experiences extreme distress. Is that person ‘high-functioning’ or ‘low functioning’? Both? Neither?
If you label people low-functioning, then you overlook their strengths; if you label them high-functioning, you overlook their needs.
Neurodivergent vs neurotypical?
The post argues that neurodiversity “in practice, has led to what many see as an unhelpful division between neurodivergents and neurotypicals — with the latter often positioned as benefiting from today’s version of original sin, ‘privilege’.”
To see the flaw in this, try making a similar argument about other issues. ‘Anti-racism is said to be an inclusive concept applying to us all, but in practice has led to an unhelpful division between blacks and whites.’ Or sex equality – men/women; or sexuality – straight/queer.
Neuronormativity is probably one of those neuro- terms that the authors dislike, but it names our society’s pressure to conform and marginalisation of those whose brain wiring means that they don’t conform. It is neuronormativity that divides people, not attempts to tackle it.
Divisions are unhelpful if they are deployed in an unhelpful way. In every movement of people mobilising against their oppression, there have been some who have described those who do not experience that oppression with hostility, or ascribed to them an exaggerated role in their oppression. And yes, neurodiversity advocates can sometimes do this. I once read a line of text stating that the reason that neurodivergent workers are disadvantaged is that workplaces are designed in the interests of neurotypicals. Not so, I responded, they are designed in the interests of employers exploiting workers to make profits. They may be designed in a way that assumes neurotypicality, but the fundamental divide is between the bosses and the workers rather than between the NTs and the NDs.
A core feature of the concept of diversity is that it goes beyond a binary. Neurodiversity demands an acceptance that there are many more than two different types of brains. Where a binary divide of ND/NT does arise, it is as a political notion, located in the context of marginalisation and oppression. It is similar to the queer/straight or black/white divide, where ‘queer’, or LGBT+, includes bisexual, non-binary and other identities as well as gay, and black encompasses all those likely to experience discrimination and oppression on the basis of skin colour. In a society that accepted sexual and racial diversity, and did not discriminate against, brutalise or marginalise people on the basis of their sexuality or skin colour, I doubt we would use these binary labels – any labelling would be descriptive and only used when relevant. But we don’t. We live in a society where people who differ from the ‘norm’ are oppressed, and however different they may be from each other, they share an oppression and come together to oppose it.
The divide becomes problematic where it becomes ‘ND versus NT’. I share the authors’ reservations about analyses based on ‘privilege’, and would not explain neurodivergent oppression on the basis of NT privilege. The celebrity examples that the authors themselves provide suggest that neurodivergence is not a barrier to privilege for everyone. Moreover, our society’s drive to conformity, its refusal to accept diversity, is damaging to everyone – in the first place to neurodivergent people, but also to neurotypicals.
Lucy and John argue that neurodiversity creates an “implicit picture of the neurotypical person, who apparently floats through life effortlessly, competently and serenely, never losing their keys or getting distracted by their phone, and always knowing exactly what to say and do in any given social situation.” They give no examples of texts that imply this.
Neurology is brain structure, behaviour is behaviour. For a person to be neurodivergent, their brain structure must be different from the ‘norm’. Contrary to the post’s assertion, a person can still experience all sorts of difficulties, such as those mentioned above, with a typical brain.
The distinction is important because, for example, not everyone who has difficulty spelling is dyslexic. For some, ‘try harder’ or better still, be taught more effectively or be given more resources, might well improve their spelling. However, recognising that dyslexia is neurological means accepting that ‘trying harder’ won’t stop dyslexic people being dyslexic.
Making progress
Neuroscience is still in its early days, and there is no objective physical test for many of the ‘conditions’ we label as ‘neurodivergent’, and so diagnosis is based on observing behaviour. The difficulty getting an assessment leads to a rise in self-identification based on observing your own behaviour. In the knowledge gaps, some people – both supporters and opponents of the neurodiversity approach – make assertions that may be disproved in the future.
We still do not have a thorough understanding of how and to what extent brain structure affects behaviour, of what is ‘hard-wired’ and what is not. Some of the questions and challenges posed by Lucy and John require increased scientific knowledge to answer. It would be very useful to increase our understanding of the human brain and nervous system.
The authors appear to criticise what they see as opposition to scientific research by some neurodiversity advocates. Autistic people and their allies are certainly wary of research into what causes autism, fearing it leading to attempts to cure them, to eliminate their way of thinking. Some of the concern is rooted in the question itself: What causes autism? casts autism as the ‘other’, a deviation from the norm, that has been ‘caused’. The more objective and useful question would be: What causes different human brains to develop differently?
Our understanding of neurology will develop. Our diagnostic criteria and labels will also develop – they have changed much over the last two centuries, and it would be absurd to imagine that they are now carved in stone. One driver of change will be scrutiny of current narratives. But that scrutiny can develop the neurodiversity approach rather than rubbish it.
The writers draw what I consider a surprisingly banal conclusion: that “much of this confusion could be avoided if we dropped the ‘neuro’ prefix. We are all diverse. We want to live in a society that accepts all of us.” Yes, you can generally make a subject unproblematic and uncontroversial by removing anything specific from it. But how does that help? The authors seem to go from bemoaning neurodiversity containing too much to proposing an alternative that contains everything. Moreover, this argument echoes the attempts that are often made to avoid challenging inequality by asserting that, for example, ‘All lives matter’.
Of course, neurodiversity has its knowledge gaps, nuances, grey areas and difficult questions – as does any detailed analysis of any oppression or power differential in society. But knowledge gaps, nuances, grey areas and difficult questions do not prove that a concept is wrong, just that it would benefit from more thought and development.
I am looking forward to reading the rest of this four-part series, in the hope that it helps develop our understanding of neurodiversity rather than ‘throwing the baby out with the bathwater’ by dismissing it.
