There is a growing interest in supporting neurodivergent staff and students. But, there is still a long way to go in making higher education a fully inclusive environment for them.
Finding out you are autistic later in life brings a specific set of challenges that often play out acutely in professional contexts. Our experience is that colleagues are willing to learn about neurodivergence, but widespread societal stereotypes still exist.
We are both autistic, which is a form of neurodivergence, and we have both encountered scenarios where colleagues have either assumed autism is a learning disability or that we possess some kind of savant superpowers.
And when Neil attended a workshop on neurodiversity at a well-known academic teaching conference, it had not even occurred to some attendees, collectively, that any academics in the room could be neurodivergent. In fact, the expressed perception was that neurodivergence was a growing “trend” for young people and that neurodivergent academics did not exist. There was a strong sense of othering with neurodivergent people discussed as if they were some other group who could not possibly be present in the room.
These frequently encountered and openly shared attitudes mean that if you are neurodivergent and find that you need to disclose at work, you worry that people who once valued your perspective and trusted your judgment now second-guess you. You worry you won’t be afforded the same opportunities your highly-masked self and deeply internalised ableism has previously allowed for.
But you also know that to continue to work and achieve any modicum of balance and well-being, you need to show up more authentically autistic in every area of life. This is the process of unmasking, which is partly about relearning and becoming your authentic self.
A framework to articulate and understand
There is an upswing of a late diagnosis of any form of neurodivergence; you now have access to a newfound language to, at last, articulate your lived experience in a way that previously – and frustratingly – eluded you.
This language is both literal; the words we use to talk about neurodivergence, and conceptual; the perspective the neurodiversity paradigm gives you to reframe a lifetime of experiences that never quite fit.
The latter involves engagement with a significant identity shift and post-diagnosis or self-identification developmental arc. It can be a profoundly personal and internalised process with fewer opportunities for others to support in a practical way.
Still, the actual language of neurodiversity is something we must all engage with meaningfully. In doing so, we can start to address the lack of neurodiversity literacy that upholds assumptions and the continued discrimination and oppression of neurodivergent people.
What is the “right” language?
We can start by unpacking the conflation of neurodiverse with neurodivergent. We witness these terms used interchangeably and incorrectly in policy documents, research focusing on neurodivergence, staff development contexts, training and teaching resources, books, and awareness campaigns on a daily basis.
Neurodiverse/neurodiversity refers to natural, neurobiological variations in humans. We are all neurodiverse, but an individual alone cannot be neurodiverse. Neurodiversity refers to both neurotypical and neurodivergent people. When grammatically correct, the term neurodiversity also attends to the social justice perspective of the neurodiversity movement.
Neurodivergent/neurodivergence is an umbrella term used to describe a range of differences, such as autism, ADHD, dyscalculia, dyspraxia, dyslexia, bipolar, acquired brain injuries, epilepsy, and more. Essentially, as two autistic people, we are neurodivergent because our minds and bodies work in a way that significantly diverges from the dominant standards.
No default normal
These terms being used interchangeably is a subtle but significant indicator that our lived experiences continue to be misunderstood. If someone says “neurodiverse” when they are actually referring to neurodivergent people, the language suggests that there is a default normal that exists separate from any aspect of diversity. In this way, diversity starts to equal a minority.
But diversity is an intrinsic part of humanity, and neurodivergence is a naturally occurring variation of human experience. If we keep othering diversity, we reinforce the idea of a singular, objective normativity.
In this way, the neurodiversity movement has much in common with all other movements that attend to intersectionality and centre the experiences of marginalised groups. This misuse of the words “diverse” and “diversity” is particularly apparent in the discourse around race. It’s all too common to see the word diverse used to mean “non-white”. This both reinforces white supremacy and is grammatically incorrect – again, diversity refers to a variety of differing elements or qualities.
As late-diagnosed autistic individuals, decades of internalised ableism led us to feel that we were inherently wrong or broken. This internal experience was reinforced by the way we were treated by others, the demands placed upon us to censor ourselves by masking extensively, and the challenges we encountered when being required to slot into neurotypical ways of being and thinking.
The beginning of a journey
There is so much more to say about the language of neurodiversity. But if we can get the distinction between neurodiversity and neurodivergence right, we’re laying the foundations for a more inclusive future beyond neuronormativity.
This is a complex journey to undertake, but if we persist in using language that reinforces the harmful notion that there is one objective, archetypical way to be human we will consistently harm all marginalised groups that don’t fit western, capitalist notions of normal, default or typical. Finding the language to describe your lifelong experience means the words carry a lot of weight – as do their misuse. What we and our neurodivergent peers and students now need is a language shift that recognises the validity of our experiences. This supports us in moving away from feelings of being wrong and towards embracing and embodying our differences.
Other ways to further your understanding include:
- Examining your assumptions around societal expectations of what is “normal”.
- Becoming fluent in the language of the neurodiversity paradigm
- Getting comfortable with being uncomfortable as you unlearn the systemic oppressive practices of neuronormativity
If you are looking to expand your understanding, Nick Walker’s Neurodiversity: Some Basic Terms and Definitions and her 2021 book Neuroqueer Heresies are great places to start. Indeed, her writing underpins much of what we’ve written about here and empowers us to find ways to make our voices heard.
Thank you Hannah and Neil for this post. Like you, I am a firm believer that if we can get the language right about disability and neurodiversity, positive shifts can follow.
Thank you Carys. Yes, I really feel the lack of literacy in this area prevents meaningful engagement with neuro-affirming practices.
Thank you Hannah and Neil – I am a healthcare practitioner turned service design specialist turned healthcare academic. Like a lot of autistics (and I’m dyslexic, ADHD) I have not had a straightforward career path. Connecting interests and skills webbishly not hierarchically. I find in my second academic post that I am both well supported personally (and via Access to Work) and continually blocked by systems and stuck ‘ways of working’. I think unmasking after sever autistic burnout causing extreme fatigue I went into my new post with a good understanding of what I would absolutely need and therefore I’m now self advocating precisely. But what I see round me is that I have become an outlier again. People who I am sure are neurodivergent are not as open, do not have accommodations, or do not have them respected. Student neurodiversity is seen as novel and perhaps only related to assessment or their ‘competence’ in placements.
I’d love us to take a more Evidence Based Practice and system design approach which I see in pieces taking shape. For example assessment schedules have no give at all in them for marking, module leading, moderation – despite me needing all my documents converting (a several day long task) because the leviathan Blackboard/ Turnitin empire has not added basic accessibility to staff side software used for marking in most HE worldwide (such as screen reader access on the Feedback Studio) . IT systems managing my work equipment are locked down so hard I cannot use my skills in adapting learnt over a lifetime.
I cannot be the only one I think again and again. How can tools used by so many academic staff used worldwide remain unchallenged when so many neurodivergent people work in education?
It must be the silence I conclude. The shame and doubt and discrimination.
And yet I see ND people innovating, fixing, advocating, researching, all the time. It is like we have powered what academia does best while doing so unrecognised.
Ray, so much of what you say resonates.
I was going to pick one or two lines to respond to, but I have thoughts on everything you’ve raised.
In my current role I manage a team and the systems and processes around managing people are fraught with difficulties for me. I also have lots of support in place via Access to Work, but no amount of support can overcome systems that have exclusion weaved into their DNA.
And agreed, I’m happy to be collaborator and co-conspirator in unpacking and improving things but we need more allies to engage meaningfully with innovating, fixing, advocating and researching.
Thank you both Hannah and Carys 🙂 This is joy to my hears
Thank you Kim, I’m glad that it’s helpful.
As always eloquent, considered and important!
Thank you Zoë!
Thank you for this thoughtful piece – it is so pertinent for so many!
Thank you John for taking the time to read.
Thanks so much for a very thought-provoking article. Could I suggest a possible series of hypotheses for explaining the kind of thing that happened at the workshop you describe?
1) Academia contains a much higher proportion of undiagnosed neurodivergence than the general population, so talking about it is too close to the bone. Lots of us went into academia because we were ‘different’ and didn’t really fit in; university was the first place where to some extent we did, and ended up staying because we weren’t really equipped to earn a living in the ‘normal’ world outside.
2) However, we are reluctant to acknowledge this, partly because the older amongst us grew up before the term existed and there was far more of a stigma, so ran a mile from any engagement with mental health services. Since that changed and neurodivergence has had a higher public profile, some of us have had a least a passing thought that we may be neurodivergent ourselves – but have suppressed this thought, or at least decided not to seek diagnosis, fearing what might be seen as attention-seeking or self-indulgence. We don’t necessarily feel oppressed, as we have long found ways of coping with life, and don’t see the point in engaging in more battles with a health service that we know to be poor at dealing with chronic conditions.
3) By contrast, academics’ recent lived experience of neurodivergence and related issues among young people is of several pages long forms along the lines of ‘students U, V, W, X, Y and Z in your seminar each have the following multiple conditions and here is a long list of individual adjustments you must make’. We want to do our best by our students, but it’s exhausting, hard to get 100% right all of the time, and we can’t help wondering if there’s an element of overdiagnosis and overmedicalisation or if this is actually reinforcing ‘othering’ – as well as maybe feeling a twinge of envy that we were students before this was all such a big thing. For example, it seems routine now for students to be diagnosed with a disorder labelled ‘anxiety’ who come across as less anxious than I was at their age.
4) At the same time that academia has adopted various languages of diversity, it seems to have become in some ways less accepting of difference, because it’s got so slick, professional, and oppressively ‘normal’, with less room for the eccentrics and misfits of yesteryear. In an age when everyone is one bad set of key performance indicators away from redundancy, and universities are far more concerned with student wellbeing than staff wellbeing, colleagues may be thinking ‘why risk disclosing at work?’.
5) There is a certain cynicism about language, as the route to career advancement seems to be to learn to talk certain languages of inclusivity, more than to be genuinely inclusive in practice. There may be a risk that admonishing colleagues for not having kept up with the ‘right’ language can itself be experienced as a form of ‘othering’.
In short, we may speak different languages, but can hopefully find common ground in our different ways of accepting that it is a positive thing that we are all different and that everyone’s experiences are valid. Thankyou.
Thanks so much for your thoughtful comments and for adding further context and some different perspectives to what we’ve written about.
We diverge on some points but I also agree with a lot of what you’ve said. HE is most definitely filled with neurodivergent folk – diagnosed, undiagnosed, those who self-identify, those who share and those who prefer not to. In many ways it’s an excellent environment for someone like me who wants to focus on a specific interest, talk at length about it and explore it from every possible angle.
I have strong feelings around the notion of ‘over-diagnosis’ and feel there is a more constructive conversation to be had about diagnostic tools themselves and the role of the DSM-V which pathologises the very nature of who I am. But in this area I am a lay person…or an expert through my own experience – depending on which way you look at it.
Your point about those who learn to talk the language of inclusivity resonates. With my team I refer to this as a difference between ‘doing’ inclusivity and ‘being’ inclusive.
Lots of food for thought in what you’ve shared, thanks again for adding to the conversation.
Excellent article and follow up comments. In a space where pedantry may be viewed positively, it’s important to remember that staff in HE includes professional services, facilities and technical staff. A professional services manager often has to fit into a very narrow view (or straightjacket) of what acceptable behaviour for their role and place within the HE ecosystem. This is often reinforced with a standard set of expected behaviours according to the grade, which can mean that natural ND behaviours are seen as performance issues and ‘punished’. An understanding of the importance of supporting neurodivergent staff across all staff types may have a more positive impact in being inclusive by design in HE.
Thank you Teresa, I appreciate the nuance you’ve added to the conversation. I might be a bit of an anomaly, in that I’m an academic, specialising in employability, and my role sits outside of a traditional academic context. So I agree, conceptions of ‘professionalism’ vary across different job families. I’m very aware of how neurodivergence can manifest in ways that are inconvenient to standard HE systems and processes. I know my frustration with things, my desire for change and my enthusiasm for working in a hyper-connected way, might not always be viewed positively. Understanding and acceptance of neurodivergence needs to be systemic if real change is going to happen.
This is an excellent article that I’ve shared wider as EDI lead in my department – thank you so much in helping me to continue learning and be able to support others to do so
Thank you Stephany for taking the time to read and share.