What burns us out as neurodivergent people?

Language

In this blog I am going to use the word neurodivergent. What do we mean by this and why is it important? Neurodivergent is a word first used by Kassaine Asasumasu in the late 1990s, early 2000s to describe people ‘whose neurocognitive functioning diverges from dominant societal norms in multiple ways’.

As Sonny Jane Wise (The lived experience educator, https://www.livedexperienceeducator.com/) explains ‘Neurodivergent refers to anyone who diverges from neuronormativity - an oppressive colonial and capitalist ideology that reinforces the idea of a “normal” mind and believes there is a right or superior way to function’. Sonny goes on to say that ‘neurodivergent is and always has been a term for those who diverge from neuronormativity including those who have been diagnosed with a mental illness or mental health condition’

What is neuronormativity? According to Stimpunks it means ‘a set of norms, standards, expectations and ideals that centre a particular way of functioning as the right way to function. It is the assumption that there is a correct way to exist in this world; a correct way to think, feel, communicate, play, behave and more. These neuronormative ideals, standards and expectations are enforced and normalised everywhere; from our relationships with each other and ourselves to our classrooms and workplaces’. (Stimpunks, https://stimpunks.org/glossary/neuronormativity/)

Why is the language around neurodiversity and neurodivergence so important? Why does it even matter? Because as neurodivergent people (and by this remember it means anyone whose functioning diverges from neuronormativity, and does not just mean people who are autistic, AuDHD, PDA or ADHD), we have spent many decades being told who we are by the pathologising neuronormative systems that have also significantly harmed us and controlled so many of us (particularly in psychiatry). These systems have controlled the narrative around 1. How we are described as people and 2. How we function as humans and why. Neurodivergent people have for many years now been taking back autonomy over how we are described, seen and treated by others (and by treatment I do not mean medical interventions). So to respect people whose functioning diverges then the language matters. I also appreciate there will be tons of people who do not care about how they are described and do not want to be described in various ways and that is completely their choice. I am not the word police. I do however feel very strongly about this issue as I object to the ways I have been described and still experience being described by people for example described as:

Someone suffering with autism - I do not suffer with having a different way of being in the world and experiencing it.

Someone with autism - Autism is not a disorder, illness or condition that I have. These are the words of oppressors who sought and still seek to control us with their ‘disorder’ narrative.

Someone having neurodiversity - An individual cannot ‘have’ diversity. Diversity describes everyone and not just people who diverge. Neurodiversity is all about variety not divergence.

Someone who is neurodiverse - Neurodiverse also means variety and so refers to variety in human minds and functioning.

Language impacts practice. If you want to affirm people whose functioning diverges from neuronormativity then the language used to describe us really matters. Use the language that most neuronormative people prefer or ask the individual. Most people prefer identity first language compared to person first (say ’is’ not ‘has’). If you want to describe anyone who diverges from neuronormativity then the word is neurodivergent. That includes people who have been identified as, diagnosed as or self identify as autistic, ADHD, AuDHD, PDA, dyslexic, dyspraxic, people diagnosed with personality disorders, mental health conditions, brain injury, epilepsy and the list goes on. Here is an image created by Sonny Jane Wise that they have also recently updated.

Burnout

When we say ‘burnout’ most people believe we are just talking about occupational burnout, a person doing too much work or studies, burning the candle at both ends, staying up too late too often, being put under too much pressure by employers or by toxic situations at work. In this day and age this is happening more often as the productivity machine asks for more and giving very little in return.

Of course neurodivergent people can experience occupational burnout because of working too hard, pushing themselves, over extending themselves. Many neurodivergent people are also carers and many are parents caring for neurodivergent children who are traumatised by the education system. Sometimes whole households are struggling because they are all neurodivergent and all burnt out.

The reason it is important to truly understand what lies behind neurodivergent burnout is because when people do not understand the reasons behind it- then they just think a neurodivergent person needs to do less, take a few days off, sleep more, take a break, go on holiday. These things are not wrong in themselves, how lovely it would be right now to just go off on holiday! But these solutions and suggestions do not get to the core of the problem, which is that the very systems within which we live and move and have our being as neurodivergent people are why we experience burnout. Escaping these systems is so difficult and for so many if not most completely impossible!

Neurodivergent people are mostly essentially blamed for experiencing burnout - the issue seen as lying within us, within a wrong mindset, believing that we do not have the tools to cope, that we are not sufficiently resilient (grrrrrr that word!), that we are disordered.

The issue is neuronormativity itself, not neurodivergent people. Neuronormativity leads to neurodivergent people having to survive within systems where normality is the expectation that is demanded, the social construct of ‘normal’ that has been devised by powerful hierarchical systems rooted in patriarchy, colonialism and capitalism. These systems are still controlling the narrative and pathologising us, dehumanising us, gaslighting us, invalidating our experiences, controlling how we are seen and how we are defined as a human and supported by gatekeeping access to things that would significantly help us. And do not think that there are not neurodivergent people who are part of this, because there are many who are, probably more than those who are not sadly.

Surviving takes so much capacity and yet the neuronormative systems do not lower their demands and expectations upon us but increase them even more - ‘You need to change’, ‘You need to get help’, ‘You need to think differently’, 'You need to adapt', ‘You need to do as you are told and do not resist’.  I am currently like so many really impacted by all the attacks on people who are autistic, AuDHD and ADHD  in the media, people who are already surviving. What with the racially motivated and ableist hate aimed at Professor Jason Arday at Cambridge University and Utah Frith’s ableist attacks in the media aimed at taking the understanding surrounding autism back decades into the dark ages, where people like me could never be seen as autistic but only seen as having EUPD and hospitalised (and yes that still happens I know). And now she is taking aim at Chris Packham, saying he can’t be autistic because he is such a good communicator! And this is all the stuff that the systems want - they want autistic and other neurodivergent people to be kept in their place, in their box! They do not want us controlling the narrative about ourselves. It’s so exhausting - and yes that’s also what they want. They want me to be exhausted and broken and to just give in, shut up, put up and be good, be compliant, be disordered and controlled.

Declaring being neurodivergent was and still is about resistance, a clarion call of resistance against systemic hierarchical control. But even the system has started to use the word neurodivergent and taken control over what it means, pathologising it by using it with the word conditions (neurodivergent conditions). We need to take it back! We need to keep being loud about our truth whenever we can and keep resisting.