The Wild of Brain burnout series. Part One
Messy terminology. WHY we burn out. Who is at-risk. How burnout cheats the world of ND brilliance.
I find some of the descriptions of neurodivergent burnout maddening. One sentence just doesn’t convey the reality of it. Never mind the seriousness of Severe Autistic Burnout. Or that some of us are isolated in darkened rooms for weeks or months at a stretch. That many of us are in lifelong burnout cycles that affect our health, mental health, financial wellbeing and relationships. That autistic burnout steals weeks, months or in the case of severe burnout, YEARS.
“Autistic burnout is the intense physical, mental or emotional exhaustion, often accompanied by a loss of skills, that some adults with autism experience.” - from Spectrum News’ piece ‘Autistic Burnout Explained’
The existence of Autistic Burnout has been common knowledge in neurodivergent communities for a long time. Not so much among mental health, care and medical professionals. We’re only beginning to see an uptick in these folks’ ND burnout awareness and much-needed academic research in the last, ooooh, I’d say five years.
Related terms running hot in the wild of brain communities are Neurodivergent Burnout, and ADHD Burnout. I’d like to see an addition to every description of ND-specific burnout stating that the additional load of being neurodivergent means we’re all at risk of ND Burnout. AND, that it’s potentially and utterly debilitating.
I was reticent to write a deep-dive on burnout because of the confusion around the different burnouts. And the word burnout being used when it’s more likely autistic shutdowns and/or sensory overwhelm. Sometimes a person will say they’re in burnout when actually they FEEL burnt out. There’s a difference. What IS clear is that every burnout is as unique as the individual’s neuro-profiles, strengths and challenges.
I’ve been paying close attention to Autistic Burnout then opening broader to research neurodivergent/ADHD Burnout for awhile now, reading countless bits of research, deep-diving into lived experience stories and engaging ND thinkers and specialists for years and can only say what I understand from seeing up close and personal and listening to community voices.
I see Autistic Burnout (those with dominant autistic traits in their profiles or who identify as autistic) as distinct from burnout as related by ADHDers (those with dominant ADHD traits or who identify solely as an ADHDer.) We know ADHD and Autism co-occur frequently. We also know there is a whole raft of other ways we can be multiply neurodivergent and this all makes it hard to get clarity. Which is why I advocate for meeting the person’s support needs rather than getting caught up in what sort of burnout it is.
It’s looking like the more ND traits we have in the mix, as well as a pile up of factors from our privilege profile and life histories, make descent into burnout more likely. I reckon our Autistic ADHD combo and PDAers are especially at risk of burnout, repeat bouts of burnout and the debilitating experience of Severe Autistic Burnout. And I am super curious about burnout in our FASD folks. Google searching reveals a bunch of content supporting caregivers of FASD children and youth, which is all good BUT we have precious little on record about the ND lived experience of FASD burnout, which is concerning. Given the traits of FASD, I can’t believe that these neuro-kin don’t experience burnout.
Remember, ADHDers can be autistic and not know. Or have strong autistic traits within a dominant ADHD profile. (You can see why I have a whole-brained approach in my coaching, so many of us are multiply neurodivergent, it makes no sense to go to an ADHD coach if you’re multiply neurodivergent.) I’m curious too, to hear stories from ADHDers without co-occurring factors who might have experienced the sort of debilitating burnout where there is loss of mobility and a complete shutdown of systems requiring years to recover as recounted by autistic folks. I’m keen to get some robust social research gathering community stories and thoughts on this.
It’s not a competition. No sort of burnout is healthy. Getting clear on what the risks are and developing ways to talk about burnout so our most vulnerable feel seen is important. We desperately need burnout awareness and getting support accessible and in place for those who need it.
There are shades of burnout. Or maybe it’s more like degrees of severity. A range. Or a spectrum. However we want to talk about it, everyone’s experience of Neurodivergent Burnout is unique and there are degrees of how badly folks are affected and how it looks externally. From what one of my coaching client’s calls ‘Dipping a Toe into Burnout’, ‘Burnout Light’ and ‘Burnout Mordor’ to the disabling and dreaded Severe Burnout. The harder we fall, and the more often we descend into burnout, the longer it can take to recover. We all have different limits and recovery rates. We can’t police what it looks like for each person.
Being multiply neurodivergent seems to be a factor in experiencing burnout and predisposing folks to severe burnout. From my observations (in my coaching practice) and research it seems like Autistic folks with ADHD and with a history of trauma (that’s a lot of us) are more prone to fall hard. Which brings us to what I call:
Complex Neurodivergent Burnout - whether Autistic, ADHD or otherwise neurodivergent. This is burnout on steroids, the extreme end of the range.
I think of Complex Autistic or ADHD Burnout as where the presentation of autistic or neurodivergent burnout is made more severe and recovery more complicated and potentially prolonged by co-occurring with pre-existing health conditions, other disabilities and/or cPTSD. Given a whole lot of ND folks experience trauma purely as a result of being neurodivergent in a world not designed for them, a trauma-informed lense and support systems are vital.
Trauma, or PTSD and cPTSD throws a magnifying glass on any kind of burnout, and adds its own layers of complexity with the likes of hypervigilance, heightened sensory sensitivities, and just generally rarking up our hyperconnected nervous systems.
Why I’m championing the terms Severe and Complex Autistic Burnout.
I think it’s important to have those whose lives are utterly put on hold and at-risk of serious related health issues, feel seen and be prioritised for support. Having language and criteria for Severe and Complex Burnout allows us to find others in similar situations, access information pertinent to our experience without having to trawl through piles of other burnout content, be taken seriously by disability support systems and helps to make clear the need for more ND-led research, both academic and social. To do this, we need ‘labels’.
I know of two autistic brilliant and beautiful and much-loved folks in severe burnout who took their own lives in the last six months. And that’s just the ones I’ve heard about. From what I see, those in severe or chronic cycles of neurodivergent burnout have a higher incidence of suicide. And no, I don’t have research to back this up. Yet.
And how does all this differ from the original neurotypical definition of burnout? The NT version of burnout is the one most often talked about in mainstream media generally refers to a deep fatigue state brought on by multi-tasking and overwork in employment and commonly ‘treated’ with a holiday, establishing better boundaries at work with lessening hours, maybe changing jobs. This is VERY different from the neurodivergent experience of burnout.
Burnout affects neurodivergent folks of all ages and stages and privilege. I am particularly concerned about the long term impact of late diagnosed autistic folks who have been in cycles of burnout all their lives, those of us deep in severe autistic burnout and I worry about the neural pathways laid by burnout in young brains that are still developing. Trying to fit into the Monday - Friday school environment and demands is often exhausting and quite frankly too much for some of our autistic, FASD, PDA, anxiety disorder, PTSD, SPD and otherwise neurodivergent tamariki (children).
So, why is Autistic, ADHD and otherwise neurodivergent burnout a thing?
Neurodivergent folks are playing the game of life on hard mode. Permanently.
Studies now show that neurodivergent brains are hyperconnected. This means that wild brains have less synaptic pruning as we grow up. Basically we have a lot more electrical activity zipping around our brains. This explains the high level pattern spotting and systems design talents many of us have AND the need for more processing and recovery time. No wonder so many of us are tired all the time!
When we consider that neurodivergent brains are hyperconnected and the implications of that, then factor in the cost of masking, sensory taxing environments, trying to meet unrealistic work, social, family and community obligations, many neurodivergent folks end up staggering through our days, especially if we’re living a life that doesn’t work for us. The cumulative impacts of constantly pushing past our limits for too long, in combination with lack of support and a glaring lack of joy, time in special interests and engagement in the things that light us up, all leads to burnout. I’ll go into the causes of burnout a bit more later in the series.
No flavour of ND Burnout is in the DSM-5 yet but there has been solid work done canvassing autistic and ADHD communities about burnout and preliminary working criteria identified by individual MH practitioners, research bodies and support organisations. Predominantly about autistic burnout. Out of Australia, I quite like the CRC’s criteria as a start. I’ve included the link below.
I mentioned before that I’ve been hesitant to write about burnout but I HAVE SO MANY QUESTIONS! We know quite little. The inconsistent use of terminology feels messy but more importantly isn’t serving our communities well. I’ve been brewing this series for awhile now. My hope and purpose in writing it is to raise awareness, especially around how severe autistic burnout can be, help advocate for more support and maybe flush out some of the questions and priority areas for both social (community-led surveys) and academic research. Top of mind is:
-Are ALL autistic folks and PDAers at risk of burnout? What about ADHDers?
-What are the predisposing factors to Severe Autistic Burnout?
-Do brain scans show as many similarities between Post-Concussive Syndrome (PCS) and Severe Autistic Burnout (SAB) as the symptoms between the two?
-How does ADHD burnout differ from Autistic burnout?
-What are the priority support needs for ND folks in serious burnout?
I could go on.
Neurodivergent people being incapacitated by burnout cheats the world of our innovative, pattern-spotting, equity-lensed creative brilliance, and presence. And the hope for the future that our work and ways of being offer. The world needs innovation and hope right now. I flinch when I think about the waste of my own time and work in the world I haven’t done because I’ve been in burnout. Multiply that by all the brilliant ND folks in burnout in the world and well, that just makes me incredibly sad.
Next in this burnout series here on the Wild of Brain substack we’re going to look into the anatomy of neurodivergent burnout, how it’s different to shutdowns and sensory overwhelm, further explore what causes it and how to spot burnout on the horizon. After that we’re deep-diving into recovery -what it takes and what the process can look like. Also on the way is Severe and Complex Autistic Burnout Special. I promise not to be all doom and gloom!
See you then.
Each week I share resources and content related to the week’s Wild of Brain theme. To inform, lift spirits or just because I keep thinking about them:
A few of us lived experience folks are slow-starting a trauma-informed Severe Autistic Burnout and Recovery peer support group on facebook. We’re building a group of admins so we can hold the group space in a healthy way. Please be patient with us!
The Insider on Burnout from That Autistic Lady. Video.
Neurodivergent_lou’s take on the signs of burnout
Signs of ADHD Burnout from ADHD-love. Reel.
This is Part 1 of That Autistic Lady’s series on Burnout. Short but very sweet. I’ll be linking to more. Her posts have been important to me and my recovery.
Dr Megan Neff on the Autistic and ADHD nervous system.
Neurodivergent Insights, Dr Megan Neff on Spoon Theory - neurodivergent version.
‘Five things that help me with Autistic Burnout’ by David of Emergent Divergence. I reckon this is worth a read for all neurodivergent folks in burnout.
Dr Alice Nicholls - What is Autistic Burnout?
Free downloadable burnout checklist from Dr Alice Nicholls. I like this story about her experience and observations of burnout.
Research: ‘Examining subjective understandings of autistic burnout.’ 2023
Preliminary CRC burnout criteria. ‘Investigating Autistic Burnout’. Australia 2022.
And here’s your dose of wholesome. The Bengsons, singing ‘Hope’.
I’d love to hear your thoughts and stories on burnout. Flick me a message, email or voice note. Don’t forget to say if you’re comfortable giving permission for me to share anonymous snippets of your story in upcoming WoB substacks.
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A much needed conversation! When I “diagnosed” myself as in burnout vs being depressed/tired/lazy/etc, I finally started to get better. And by better I don’t mean more productive, but able to keep on living.