The Wild of Brain Burnout Series. Part Four: A Severe/Complex Burnout special
From a world of hard to hope. A Severe/Complex Autistic Burnout special -the last in the Wild of Brain burnout series.
So far in the Wild of Brain burnout series we’ve covered:
In Part One: Tidying terminology. WHY we burn out. Who is at-risk.
In Part Two: The anatomy of burnout. How it differs from shutdowns and sensory overwhelm. Monotropic split and other burnout causes.
In Part Three: Prevention and recovery. Identifying red flags of burnout and planning a response. Designing a life that works for our unique selves.
If you haven’t already, you might want to go back and start at Part One.
Grab a cuppa, this is a doozy.
It’s been good to see more acknowledgement about Severe Autistic Burnout out there in content creation land recently. We all need to feel seen and it’s clear more ND awareness and education of mental health, care, medical and support professionals is needed. I see those in Severe and Complex Autistic Burnout as some of the most vulnerable in neurodivergent communities. Accessible and appropriate support is needed for any sort of serious neurodivergent burnout. In my equity-focussed systems change work, my approach is to flip the usual script and design for the 15-25% most disadvantaged and trust that everyone else will be okay. Same goes here.
So what makes Severe Autistic Burnout severe? Just how bad can it be?
Bad. Very bad.
Autistic burnout can be utterly debilitating. I spent many months in bed, with the curtains pulled and door closed to limit the light. My nervous system was so shot that despite so much time in bed, desperate to sleep and rest, I had trouble getting to sleep and staying asleep. The sound of our fridge and electricity were so damn loud I had to wear noise canceling headphones all day and earplugs at night. Anxiety zinged along with the sounds of electricity. I lost the ability to speak for chunks of time. I couldn’t read, or write creatively. I couldn’t go for even the shortest of walks. Books, writing and being in nature are the main ways I process and cope. It hurt that these things were lost to me. The fibromyalgia got worse to the point of chronic pain. The joint pain and muscle weakness was ridiculous. I couldn’t open jars. I would be carrying something and my arms would collapse and whatever it was would fall, with no forewarning. It was like the signals from my brain didn’t have enough juice to get to my muscles to tell them what to do. I had limited movement in my arms and neck. I would wake with my shoulder or fingers subluxed into strange shapes and pinging with pain. cPTSD traits all loomed large. Executive functioning, brain fog, sense of impending doom, morning dread, isolation - all through the roof bad. I would panic and feel overwhelmed at the thought of the simplest of days. I went from being someone who hardly ever watched a show to someone who ripped through whole series, needing to be taken away from my reality into somewhere better. I’d always had exercise intolerance but this was next level. I would do a simple task, like the dishes then have to rest several hours. There was no-one else to ask for help, I had to be ruthless in prioritising what I did. Or tried to do. I couldn’t protect my kid completely but I saved what spoons I had to get up and go through the motions of bus pickup and making dinner, if I could manage it. If I got it wrong, or pushed things I’d pay for it by being slammed with pain and/or being thrown into autistic shutdown, battery dead, spoon drawer empty and out for repairs, back in bed in that darkened room but unable to sleep with no idea how long I would need to be there. Again.
Everything was slow. My thinking, my movements, my recovery in general. For someone as fiercely independent as me, who took pride in being quick witted and strong of body, it was hard.
I was advised to choose one thing to do a day. I felt profoundly alone. Cut off from the world and despite being brutally honest about how I was and despite all the meals I’d delivered, money given and support offered in all my community work over the years, there was nothing. I think a wonderful person delivered a meal and some delicious cake one day. Occasionally someone would say flippantly, “Let me know if you need anything.” But I didn’t have the capacity to know what I needed, nor the strength to ask if I did. I went many months without the physical touch of another adult. I came to understand how some elderly get to a point of being completely isolated.
Depression crept in once it sunk in how badly I was affected and it dawned on me how long I would need to recover. Some days are still like that but I have better days. I am slowly building back strength in my muscles. I’m recovered enough to be angry about my situation, which I suppose is a good sign. I’m up to three things a day, sometimes more in a good stretch but there are still regressions and I regularly reach a point in the day where it’s like walking into a brick wall in my brain and I know I just can’t do anything more. I’m getting better at gauging my fluctuating limits and I’m better enough to feel mad about them.
I’ve previously described Severe/Complex Burnout as,
‘a near-constant shut-down state, debilitating loss of interoceptive and proprioceptive abilities, reduced capacity or inability to mask, unable to sustain usual work life, self care and mobility potentially compromised to a point of the person being vulnerable and isolated.’
I have friends who lost way more mobility than me in their Severe Autistic Burnout. One who had to learn to walk again. The recovery required from this level of severity takes years to recover from. The terror we feel coming out the other side and starting to take on work and more commitments is very real. We know darn well what we risk if we get it wrong.
It’s not uncommon for people to get deep into Severe Autistic Burnout before they’re diagnosed autistic. This means that they also have what I call the post diagnosis relief-anger-grief roller coaster to ride AS WELL AS the debilitating burnout experience and painfully slow recovery. It’s a lot. Please go gently if this is you.
And what the heck is Complex autistic burnout?
I think of Complex Autistic Burnout as where the presentation of autistic burnout is made more severe and recovery more complicated and potentially prolonged by co-occurring with pre-existing health conditions, other neurodivergence and disabilities and/or cPTSD.
We know that trauma throws a magnifying glass on neurodivergent traits, same goes with burnout. cPTSD adds its own layers of complexity with the likes of hypervigilance, heightened sensory sensitivities, and just generally rarking up our already hyperconnected nervous systems.
Using the term Complex in describing burnout is a way of acknowledging the layers of the person’s lived experience, all of which need to be shown care in recovery.
There is an unfair thing that can happen in recovery for those with trauma, and that is that in the stillness of burnout recovery life, the mind sees an opportunity in the unusual space opening up in a usually busy life, to finally find healing for cPTSD that the person may not have prioritised, had money to support or even known they needed. This means the trauma healing exacerbates the burnout, sort of piggybacking onto recovery. Making it more complex and necessitating a fierce focus on vagal toning and consciously regulation of our nervous systems. Gah!
Who is at increased risk of fast-onset burnout AND more severe autistic burnout?
The late diagnosed and unsupported. The less privileged of us, those with significant co-occurring health issues and those already starting from a socially isolated place in life. Folks with a fierce attachment to life commitments unsustainable for their unique neurotype profiles. Those with cPTSD or PTSD. For autistic folks with co-occurring ADHD (AuDHD if you use that term) like me, that tension between the all ideas go go go of the novelty-seeking ADHD mind squirrels and my autistic need for the known, plenty of time and space to process life preferably in a darkened room, I consider the defining tension central to my life. I think it pushes us into the ‘more prone to severe burnout’ camp too.
An interesting pattern I don’t see talked about much is that those autistics newly diagnosed with ADHD and newly medicated can be enthusiastic about what they can now achieve and unaware of what cost it comes, especially if they’re AuDHD (Autistic and ADHD), which is a lot of us.
PDA profile folks are overwhelmingly represented in those I know or hear of in severe autistic burnout. I’m wondering about gender as a factor too, most severe burnout folks I know are women or non-binary. I know I’ve said this a lot but one more time for those in the back, WE NEED MORE RESEARCH!
I have a theory that those of us with the well worn neural pathways of life in repeated burnout or burnout cycles are more prone to fast onset burnout AND of that burnout becoming severe.
If you have or are experiencing Severe Autistic Burnout, I reckon that’s a huge neon-lit sign that you need support/or more support, even when you’re not in burnout. A wee reminder too, that we can’t recover and go back to the exact same life that sent us into burnout without expecting the same result.
If you’ve hung around here, you’ll have heard my spiels on the necessity of energy accounting and life mapping, doing the work to identify our sensory profiles and custom designing a life that works for US, rather than hustling to live a life that does not - and ending up in burnout. There’s a link below to a Substack supporting this practice.
Wait. Severe Autistic Burnout sounds a lot like ME/Chronic Fatigue Syndrome
Yes. The Severe Autistic Burnout experience can resemble ME/CFS, and lupus. And Lyme Disease. And long COVID. And PCS (Post Concussion Syndrome). Maybe even FND - Functional Neurological Disorder.
I have so many questions about all this. Autistic folks managing ME/CFS can experience burnout, a layer of further complexity. I know people who were diagnosed ME/CFS but then went on to be diagnosed autistic and now think they were actually in Severe Autistic Burnout. This is absolutely not to say all ME/CFS folks are autistic but there is much more to learn.
I have friends with severe ME/CFS. One who had been unable to leave her house, mostly bed-bound for twenty years and another friend, a kick-ass active builder type,. had a year in bed unable to stand much light or sound, his nervous system on fire, in pain and digestion next to non-existent. His friends took turns to check on him, making sure he had food he could try to eat. It was hard watching him fade away. Harder to be him.
I know from being with these friends that there is much for us folks in severe autistic burnout to learn from ME/CFS communities:
Pacing is a key ME/CFS self-management practice. It is very similar to energy accounting, which is one way to describe a system of being aware of how much energy we have and prioritising where to ‘spend’ it.
As well as pacing, ME/CFS communities give us useful terminology about exercise and task intolerance:
PESE: Post-exertional Symptom Exacerbation.
PEM: Post Exertional Malaise
These terms give us a language to describe ‘the doing a thing then having to rest’ phenomena so common in severe burnout. Somehow, knowing what we’re experiencing has a name, helps. Having a shared language helps us connect to others who understand this aspect of our experience, and helps us advocate for ourselves and our loved ones within health and support systems.
Building burnout recovery support
Recovery from any debilitating condition or injury takes a team. Ideally. I’m fully aware of the social isolation of many autistics and the barriers to support due to lack of spoons, being financially disadvantaged and not having a partner, friend, family or support worker to aid the facilitation of support. Co-occurring health conditions can mean a pile-up of specialist appointments and care tasks, diet/s and treatments.
It can feel like a full-time job to manage all the appointments, research, identifying potential therapists & specialists. It gets exhausting to advocate for yourself. My only advice on this is to prioritise. Take things gently with the trauma work, stabilise and focus on regulation first. Trauma healing stirs stuff up. It’s perfectly valid (and wise) to focus on getting yourself to a good place before starting or continuing down that path.
What might a Recovery Support Team look like?
ND-affirming and trauma-informed professionals who are familiar with Severe Autistic Burnout like Occupational therapists. General Practitioner. Clinical Psychologist and other Autistic Specialists. ND Specialist Coach / Therapist / Counsellor.
Trusted family member/s and friend/s.
Gentle yoga and somatic movement practitioners, fitness trainers.
Nutritionist,naturopath, massage therapist.
Cleaners, meal preppers, essential errand runners, walking companions.
Peer support - groups online and in-person. A mentor, or matching with someone else in recovery to cheer each other on and share resources and coping strategies with.
You might form or join a neurodivergent book club, put a call out for autistic pals to hang out at a hot pool or beach. I count support animals as valid support too.
Just to clarify, I don’t have anything near as comprehensive as what I’ve outlined above. I wish! Key for me has been connecting with other women currently in, or who have experienced Severe Autistic Burnout. Knowing some amazing women who are living proof that full recovery is possible has been a huge relief. Through them, I feel less alone, have been encouraged through some very hard times and benefit greatly from their wisdom. I know they know.
Managing the spinning plates of support
All the spinning plates of appointments, research and care tasks? If you have trusted people asking how they can help, or you have disability funding, you might hire a support worker to motivate and handle the ridiculous amount of life admin that comes with disability. Or come up with a system to help you manage the mountain of bureaucracy. Spreadsheet anyone? Or colourful post-it note wall?
I have to acknowledge equity issues and financial barriers to access support here. Some of us have disability funding for some aspects of care but this comes with limitations and the weight of bureaucracy. Diagnoses are the key to unlocking some support but there are so many barriers between neurodivergent people and diagnostic assessments. In my coaching practice I offer a sliding scale of fees and am open to trade but not everyone does this.
Frustration and grief are part of the recovery process
Mental health wobbles are to be expected in the protracted spiral of severe burnout recovery. If you’re well enough to feel angry at your situation, frustrated at how limited you are or walk with grief, know that these are all signs of recovery. And proof that you’re human. Weirdly, it can help to know what’s coming.
In Part Three of this series I outlined the Four Phases of Autistic / Neurodivergent Burnout. I have an outline of recovery phases brewing. Thing is, it’s more of a flow chart than a trajectory. Healing is not a linear tick box process. Recovery from severe burnout is not formulaic, it’s a unique dance of trial and error, a regress/tweak/rest/repeat thing, a sort of a meander that doubles back on itself at times. I don’t have much IRL adult contact this deep in burnout recovery so find it helpful to do a Autistic Burnout Check-In list every few weeks or so. This helps me acknowledge my recovery progress AND to act as a safeguard to help catch me if I’m getting off track and doing too much. I’ve put my current version as a sample and a template for you to customise your own in the resource section of my (fledgeling DIY) new website.
Defining recovery for ourselves
I defined myself as in recovery from Severe Burnout when resting became a choice. When things were super bad, I couldn’t get out of bed, life felt like it was on hold. Choice was taken from me. I was in a kind of holding limbo until something healed in my fried brain and my nervous system regulated enough to free my cognitive abilities enough to reinstate my ability to choose to rest, to choose the things in life that light me up.
A wee tip: When you are no longer in severe burnout and move to being in recovery, I strongly suggest choosing rest. In a world that pins our value to productivity, there is a temptation to push recovery, to get back out there, and do all the things. In our excitement at feeling a bit better we can risk regression.
Regression and recovery slumps
Regression is when we start to feel better and unconsciously lapse back into the kind of days we could expect to sustain before severe burnout. Doing too much too prematurely in our recovery can slam us right back into a near-constant shutdown state.
A recovery slump is what I call it when healing progress plateaus. This is a natural part of any recovery process BUT can be the precursor to regression if we’ve taken on commitments and are not prioritising our burnout recovery.
Recover enough to be able to choose rest. Then consciously commit to the rest you need.
Different kinds of rest
I used to feel like such a failure at resting. I had taken the Hallmark movie kind of rest, of sitting poolside with a fancy drink and a book, to heart. I need a lot of downtime to process and regulate and love to read but my ADHD mind squirrels can only handle so much of the Hallmark version of rest. Some people need zen rest, needing a repetitive action or task to reset. Or busy fingers rest, who find rest within the rows of their knitting, in french seams, painting or other art. Or cultural rest, where sinking into the vibe at their marae or church or moon circle does it for them.
Like knowing our sensory profiles, understanding what kind of rest we need and finding ways to meet those needs, is essential in burnout recovery.
I have to keep reminding myself that rest doesn’t just come in one flavour. There’s physical rest - think naps & taking a break from big physical exertion, emotional rest - choosing safer spaces & sinking into time with trusted people (or steering clear of humans for awhile), creative rest - prioritising crafting or art of choice & shelving any creative pursuit that feels like a demand, sensory rest - embracing more stimmy sensory yumminess & ditching the sensory ick, cognitive rest - savouring word or strategy games & taking a break from the deep-thinking mahi and social rest - you might choose more one on one walks and zooms over big social events. We might throw chore rest into the mix - going on strike from housework and beautifying a corner of your home instead. To name a few.
It’s helpful to know what kind of rest we need. No point in forcing ourselves to spend hours on the couch if we’re antsy the whole time. I have a friend who is an active rester. He replenishes by pottering with heavy machinery. You do you.
It helped me to think of rest as being a radical act. A middle finger to the capitalist world that my brain is not built to live in.
Stay alert for diagnostic overshadowing
My working definition of diagnostic overshadowing is, ‘when a person's symptoms are minimised or ignored by health, care and mental health professionals attributing symptoms to existing condition/s or neurotype when actually they suggest an additional co-occurring issues, conditions or ill-health, that then go unacknowledged and untreated.’
For autistics, this might mean medical folks focus on putting our complaints all down to being autistic. This is sometimes called medical gaslighting. Whatever we call it, diagnostic overshadowing is troubling. There is a very real danger of serious health issues being overlooked during autistic burnout. Especially severe. If we have health concerns, we need them heard and taken seriously. To be heard and get action, I prepare for appointments by getting clear on possible outcomes, making notes so I can advocate for myself and keep things on track.
A combination of communication differences between allistic and autistic people, unique interoception, the ignorance of many GP’s and nurse practitioners and the sensory unfriendliness of many health practices can lead to autistic shutdown triggered by stress. Some autistic pals take a support person with them.
Throw situational mutism into the mix and the lack of health advocates to support autistic people navigate health systems (here in Aotearoa NZ all public health board specialist services only communicate by phone) and the threat of diagnostic overshadowing is a very real one. No wonder autistics have horrendous health outcomes and a shorter life expectancy than the average (neurotypical) bears.
Why it’s important to talk about Severe Autistic Burnout
Ironically I had taken on the big lead role of an emerging nationwide equity initiative knowing darn well it would drive me into burnout. I was a single mama with no financial buffer or support and saw no other option than to continue working. Also at play was my pesky sense of service, I knew there were only a handful of people in the country with my experience to kick start the initiative’s establishment phase and to quote someone from central government’s Dept of Internal Affairs, ‘You were probably the only qualified person who’d consider whatever salary they were offering.’ Ouch.
I was still digesting my surprise ADHD diagnosis and freshly embarked on my holistic assessment for autism when I took the job. Desperately wanted housing security and a better future for me and my kiddo was a huge driver. As was being able to afford dental care. I had a long conversation with my kid about it. I’d never been able to work flat out for more than a year without falling into a flaming mess. The information I was missing was just how bad burnout could be. Had I known how debilitating severe autistic burnout can be, I would never have taken the job.
Remember, it can take mere weeks or months to slip into severe burnout, especially for those of us who have been stuck in a burnout cycle, but it’s a year or years to recover. It’s not worth pushing our capacities. Absolutely not worth it.
If you consider yourself in the Severe/Complex Autistic Burnout Club - either past or present - you are welcome to join the Severe Autistic Burnout Recovery Peer Support facebook group. It’s a trauma-informed hopeful place, community-held space for autistic folks who have been in or are currently experiencing severe and/or complex autistic burnout. To share stories. Find solidarity. Share information and resources, tips and tools that support burnout-free life and burnout recovery. See our experiences reflected in others.
It’s been a long read but I really wanted to get all this to you. It’s been a long exhale between WoB Substacks anyway. Things have been tough here. The good news is that my cognitive fire has rekindled and the resurrected writing mojo resulted in a line-up of Substacks waiting in the wings. Yay!
Each week I share resources and content related to the Wild of Brain theme. To inform, lift spirits or just because I keep thinking about them:
Download the free Wild of Brain Burnout Recovery Check-In Sheet. There’s a sample one to give you an idea of how I use it, and a blank template for you to customise your own.
Dr Alice Nicholls on energy accounting in autistic burnout.
Wild of Brain Substack on my method of energy accounting, ‘Counting Spoons and Life Mapping - to help mitigate, avoid and recover from burnout - and to manage anxiety.’
Comprehensive resource on pacing from Action for ME.
Post Exertional Symptom Exacerbation (PESE) & Post Exertional Malaise (PEM) info.
Cognitive FX Post Concussive Syndrome symptom list - freaky how similar it is to Severe Autistic Burnout hey? I would dearly love to see a study with scans of autistic folks in severe burnout.
An explainer on FND - Functional Neurological Disorder.
A day in the life of someone regulating their nervous system.
Sensory Sloth facebook series asking whether it’s burnout or ME/CFS, or both? And exploring the overlaps. Thanks to The Chronically Resilient OT for this one.
The Double Empathy Problem in Medicine: Autism, Health & Communication by Claire-Eliza Sehinson and Dr. Megan Neff, PsyD on the Neurodivergent Insights site.
Reel from David / Emergent Divergence on Autism, ADHD, anxiety and burnout.
I talk about Severe Autistic Burnout and recovery with Amy Richards on The Squarepeg podcast HERE. Amy’s podcast and her guests have been a source of learning and fierce autistic pride for me over the years. If you haven’t listened in yet, you’re in for the treat. Many treats!
One for pride month from Dr Raquel.
As always, ending on the wholesome. LadySpeech has wise words for us.
Like or follow the facebook page for more content and announcements about the Wild of Brain book launch.
Go well and go gently out there.
Ax
