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I recently celebrated my two-year ‘autistiversary’ – the second anniversary of completing an autism assessment and being formally recognised as autistic. I described something of that process in a previous article,¹ and am delighted to be able to follow up here with some further reflections on the neurodiversity paradigm, specifically, how we talk about different kinds of minds. I’ll focus on language because language is power.² It not only describes but shapes and influences the landscape we live in. It’s also one of my passionate interests.

Before I trained to be an art psychotherapist, I studied linguistics and worked for around a decade in academic language research. I’m no longer in that field day to day, but it continues to fascinate me. The way we talk about our services and those who use them can say a lot about our underlying values and beliefs as practitioners. Language also does much of the heavy lifting when it comes to creating the professional cultures in which we operate.

I want to note at the outset that I’m curious to explore issues of language and power, and hopefully offer some helpful food for thought, but I’m in no way intending to try to police colleagues’ language, or shame folks who haven’t already considered the issues I’m talking about or those who see things differently to me. I also want to acknowledge the massive privilege I have in my own autistic life; being able to speak, write and understand a language, and actively enjoy using it, gives me access to mainstream culture and community in a way that many so-called ‘non-verbal’ autistic people simply do not have. I will come back to this point later. 

The ‘neurodiversity revolution’, as I think of it, started in the 1990s and gained momentum through the noughties. Recently, it has received a lot of attention in mainstream media,³ as well as academic and professional literature,^4,5 so there’s a good chance that you’re already familiar with at least some of the language that I’ll be drawing on here. But in the spirit of ‘no person left behind’, I’m avoiding an assumption of any prior knowledge about neurodiversity, and I’ll try to define or explain the jargon as I go. I’ll lean heavily into ideas from autistic community specifically, because that happens to be the flavour of neurodiversity I know best through my own personal and professional experience. 

What is neurodiversity? 

Psychologist, author and educator Nick Walker has been an influential contributor to the emergence and development of the ‘Neurodiversity Movement’ since its inception. I find her succinct definition of neurodiversity very helpful. She says, ‘Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species.^’6 In other words, human minds differ in the ways they work, and that is neither inherently good nor bad, but simply a feature of life’s rich tapestry. Walker goes on to say, ‘Neurodiversity is a biological fact. It’s not a perspective, an approach, a belief, a political position, or a paradigm. That’s the neurodiversity paradigm… not neurodiversity itself. Neurodiversity is not a political or social activist movement. That’s the Neurodiversity Movement…not neurodiversity itself.’⁶ (Emphases are in the original text).

As an autistic language geek, I very much appreciate Walker’s careful attention to detail, and the linguistic effort she goes to in disentangling the social, political and constitutional aspects of neurodivergence. I also recognise that many folks whose ‘bodyminds’⁷ have traditionally been described using terms such as dyspraxia, dyslexia, Down’s syndrome, attention deficit hyperactivity disorder (ADHD), dyscalculia, autistic spectrum disorder (ASD) and Tourette’s syndrome, do not appreciate being labelled as ‘divergent’. Talk of difference and divergence can feel othering because it automatically marks out a so-called neurodivergent person as the special case, and implies that there is a neutral, ‘normal’ reference point from which some of us deviate. 

For these reasons, some folks refer to themselves as ‘neurodiverse’ or ‘neurodistinct’ rather than ‘neurodivergent’, while others eschew those kinds of descriptions altogether, choosing simply to say that they are a member of a ‘neurominority group’. ‘Neurominority’ reflects the relatively small population of neurodivergent folks, compared with the neuromajority group often known as ‘neurotypicals’. Current estimates put dyslexia as one of the more commonly occurring flavours of neurodivergence, with around 10% of the UK population thought to be dyslexic.⁸ ADHD is less prevalent, with around 5% of the population being identified as having attention differences.⁸ Autism is thought to occur even less frequently, with only 1–2% of the population currently recognised as autistic⁸ (although this last figure at least is almost certainly an underestimate).^5Ìý

While the numbers may be relatively small, for all the reasons outlined above, it’s always good to ask members of neurominority groups how we would like to be known, rather than imposing your own language preferences on us. This becomes particularly important when a person’s intersecting identities mean that they are especially likely to experience discrimination or exclusion (for example, consider the situation of a dysgraphic genderqueer person of colour with Tourette’s syndrome and limitations on their mobility). Asking how a person wants to be known also gives an opportunity to hear whether they prefer to be described using person-first language (i.e. person with dyslexia) or identity-first language (i.e. dyslexic person). These alternative options are not readily available for all flavours of neurodivergence (e.g., ADHD), but where choice exists, it can be helpful and supportive to explicitly check it out. Worth noting is that a number of research studies suggest a majority of the English-speaking autistic community prefers identity-first language (autistic person).⁹ This might come as a surprise for those of us who were trained to ‘see the person before their autism’, and talk about this particular flavour of neurodivergence as though it were an external appendage or accessory that a person ‘has’, e.g., ‘person with autism’, or the rather troubling (to me) formulation: ‘person living with autism’ – yuck! 

(De-)pathologising neurodiversity 

Emergence of the neurodiversity paradigm may well have played a part in the autistic community’s current preference for identity-first language. Not so long ago, understanding autism as a disorder, using the language of pathology, was the only available option. Traditional approaches have historically taught us that neurodivergence is something that needs fixing or getting rid of. We’re used to hearing about the ‘symptoms’ of neurodivergence, and the processes of ‘assessment’ that neurodivergent persons undergo to receive a ‘diagnosis’ of their (usually pathologised) ‘condition’, ‘deficiency’ or ‘disorder’. Note that each of the terms in quote marks come from the medical model, and are usually used in the context of illness and disease – situations that we would rather not have to contend with, things we take medicine or have surgery to get rid of, or at the very least try to minimise and control.

The challenges that neurodivergent persons face in a world that is often not well tailored to our needs are certainly not ignored within the neurodiversity paradigm. However, we now have language that allows us to reframe neurodiversity, not as disorder but as part of a person’s constitution and identity, and to recognise the unique strengths and capacities that neurodivergent persons bring to our wonderfully colourful human world. Why is this important? Well, emerging research increasingly recognises that holding a positive neurodivergent identity is associated with wellbeing and self-esteem.¹⁰ How easy or possible is it to develop a positive neurodivergent identity when the language used to describe us routinely frames our bodyminds as problems to be solved or disorders needing treatment? 

For these reasons, I’m working to de-pathologise my own language around autism and neurodiversity, and to share these ideas with the people I meet as a trainer and arts therapies educator. You may have noticed in this article that I try to avoid using the language of ‘diagnosis’ wherever possible, using ‘discovery’, ‘identity’ or ‘recognition’ as alternatives (e.g., ‘I discovered I was autistic two years ago’ and ‘I was formally recognised/identified as autistic two years ago’). The language of support needs is now much preferred to the framing of neurodiversities in terms of ‘functioning’ or ‘severity’. For example, instead of saying I have ‘mild’ autism or am ‘high functioning’ (as many of us will have been socialised to do), I describe myself as – and am extremely fortunate to be – a person who has ‘low support needs’ in many areas of my life. (It’s probably worth noting that that there are also places where my support needs are higher, they’re just generally less visible in professional life than at home.) I also talk about autistic experience and culture rather than the ‘symptoms’ of autism.¹¹ Reframing autistic experience as a distinct culture has been a game-changer for me; it allows me to simultaneously acknowledge the challenges and difficulties that being autistic brings, while also celebrating the wonderful things that make me who I am and that I wouldn’t be without. 

I also encourage folks to consider whether autistic people who don’t use speech as their primary form of communication are truly ‘non-verbal’, which might imply the absence of access to any kind of language, or could be more accurately described as ‘non-speaking’. I would wager that all of these folks have rich internal experiences, and it’s clear that some have exceptional written communication skills¹² but just don’t use ‘mouthwords’ to share their internal world with others. ‘Mouthwords’ are, as the term suggests, spoken words that come out of our mouths, rather than words that appear in written form. This is one of many excellent new phrases that I’ve acquired since being welcomed into neurodivergent community. In a world that prioritises, prizes and valorises talking and oration, being a non-speaking person brings a bunch of significant challenges in everyday living, not to mention negative assumptions about competence and capacity, and a marginalised, stigmatised social status.

How inclusive is inclusivity? 

One final thought is around the language of ‘inclusion’ when we talk about neurodiversity – or any other dimension on which humans differ. As an openly autistic practitioner, I now find myself in a number of roles and spaces where I am invited to speak to issues of equality, diversity and inclusion (EDI) in my professional life, and I really welcome and enjoy these opportunities. Recently, I was struck by Myira’s Khan’s writing about the problems of inclusion and inclusivity when we think about ourselves as helping professionals.¹³ Khan helpfully points out that the language of ‘inclusion’, while well-intentioned, is intrinsically othering because it implies that there is an ‘inside’ and an ‘outside’, and reinforces a situation where privileged individuals (which often includes those of us in the helping professions) have the power and means to invite outsiders in – or keep them out. In Khan’s own words, ‘Being inclusive means to include those who are oppressed but still maintain your power by positioning yourselves as normative, neutral, central and invisible. Inclusive implies that there must be a level of exclusion taking place. Being exclusionary means using your power to put up barriers and having the power, dominance and authority to choose who you include and exclude.’¹³ (p29). Perhaps in time, we might move away from a focus on EDI towards something like EDB – equity, diversity and belonging – where belonging is something that we all have the capacity to seek, promote and enjoy on our own terms. We may have to wait for someone else to include us, but we can decide for ourselves where and when we experience a sense of belonging. 

In this article, I’ve made a case for more conscious, intentional and anti-oppressive language when we talk about neurodiversity.² I hope to have persuaded you that our language choices have impact and help to shape how neurodivergent persons think and feel about themselves.¹⁰ We have tremendous power, as helping professionals, to influence not only how our neurodivergent service users and colleagues experience themselves, but also to shape public narratives about neurodiversity.¹¹ Language is power. What we say about neurodiversity matters, both within our therapeutic spaces and outside them in the wider community. 

I write here as a white, cisgender, able-bodied person fortunate to have a huge amount of privilege in my life, including the luxury of time and space to contemplate and write about language in the abstract. I’ve said it already, but it bears repeating: it is not my wish to create feelings of shame or guilt in relation to the languaging of neurodiversity, and it is certainly not my intention to police or criticise anyone else’s language use. Unless you recently completed a neurodiversity-affirming professional training, you will almost certainly have been socialised to do and say pretty much all of the things I’ve cautioned against in this article, such as using the term autistic spectrum ‘disorder’, talking about the ‘symptoms’ of ADHD and the ‘diagnosis’ of neurodivergence, and so on. Like me, you will probably have heard some things coming out of your mouth, when talking to or about neurodivergent service users and their communities, that in retrospect might feel problematic.

I urge you to keep the faith. As helping professionals, we’re generally all doing the best we can, and to paraphrase the poet and civil rights activist Maya Angelou, you can only ‘do the best you can until you know better. Then when you know better, do better.’¹⁴ My hope in offering these thoughts is that when we know better about neurodiversity, each of us can do better by contributing to a world where all kinds of minds and flavours of neurodiversity are welcomed and supported to flourish. 

Ïã¸ÛÁùºÏ²Ê¾«×¼×ÊÁÏ Children, Young People and Families, December 2024