Autistic burnout and the dichotomy of “living to work” when your reality tells you it’s the other way around

If I’m truly honest with myself, and I have never been more so, I have burned out from every job I have ever had, no matter how long or short the time that I worked in it.

My first job was only for 8 months post degree and the burnout was subtle that time, but nonetheless the reason I would have taken anything to get away from it, so I did. Six months later I had another burnout, more serious this time, labelled “a sort of glandular fever” by the doctor who signed me off for yet another week, making up about a month in total that I was mysterious ill at home before it was made obvious I had to leave by my quite intolerant employers.

The next one lasted almost five years and is testament to the fact it was the least conventional of any job I ever had, so I could make up my own rules and invented all the office “systems” from scratch (to my own design and unique way of thinking, ensuring I was valued since no one else really knew how they operated) and was left largely to my own devices, often completely on my own for long periods of the day. Yet, in the end, I burned out quite severely and took redundancy then collapsed into a two year hiatus that led slowly into a hotch-potch of self-employed roles, basically anything that allowed me to work at home, alone and with no one to answer to.

When finally forced back into the world of conventional work, into a busy and pressurised office environment with so many autistic triggers (in hindsight), such as working in teams, strip lighting, banks of computers, no privacy or autonomy, sealed windows and no access to nature, minimal breaks and authoritarian bosses, its a miracle I lasted a week but the burn out at the end of two years was spectacular. I never worked again!

That was when I was 38. These days, and I have only realised it slowly, anything that reminds my nervous system of “work” acts as a very-high trigger, which is why the relentless rush hour traffic where I live is one of the worst.

I have been away from home for a week, feels like much longer, and during that time we first visited a place we are sizing-up to move to and then went on another hour north to Derbyshire, staying in perfect peace and quiet near the Monsal viewing point up in the peaks. I unwound utterly while was I was there; so much so I was concerned the mere fact of being on the motorways coming home would trigger me for being so overstimulating. The universe had something up its sleeve for that as I have never known so many stretches of motorway to be closed in one day, forcing us to take country roads for quite a lot of the journey including the final hour of winding country routes back to where we live in the busy Thames Valley in “commuter corridor”. Because of this, I hardly knew I was back on Sunday evening.

This morning, the sound of relentless traffic is back and I witness its effects inside of me clicking on like never before, having had the break of it. Immediately my system registers that build-up of heavy traffic from 6am, I tense up in all my muscles, deep into my core, just as I must have done on most of the mornings I had to prepare to go to work during the couple of decades that I did so. It honestly feels like PTSD when I am reminded of “work” and I strongly dislike mondays though they are really very similar to my other days except my husband is around less. In fact when I was still working, and inevitably woke up and registered that traffic sound calling me onto its conveyor belt, so ingrained did it become, like an inbuilt alarm, that it was the cue to my brain that it was a weekday (so better brace myself) or, if absent, it must be a weekend thus I could relax. All these years later, it still has its effect and is much worse, as the weekends are hardly any different on our road any more since lockdown!

As long as my husband has to work, as long as we are tied by circumstance to him working (even though he now works at home, since the pandemic), it still feels as though there is such resistance in me to something that remains fundamental about our lifestyle arrangements that it makes everything about our life here feel wrong and abhorrent. Thankfully, the need for him to work is coming to an end very rapidly now and I can see the end in sight.

Because, there’s the key word…there has been great resistance inside of me, a physical squirm and a desperate struggle since the very first day I first had to get up and go out the door to work to earn a crust, as though something in me was screaming “nooooo, this makes no sense”. Add onto this the fact that so many people hold the belief system that if you do not work you are some sort of lowlife, a wastrel and a drop-out and suddenly there are thick layers of shame and fear of neurotypical abandonment thrown onto of all those uncomfortable feelings of resistence because I have tried as hard as the next person to do what is expected of me and then failed. The whole thing is an internal mess as I just don’t get why its the be-all-and-end-all of so many people’s lives (except to make themselves or others rich) and it seems to me life is being looked at the wrong way around when work is the main reason you get up five days a week yet our entire culture has been made so people are forced to, for basic survival. Surely the ability to live is a given, not something to be handed over in such a contractual way?

Getting up and doing something from passion, from enthusiasm, from interest and drive I can get, but getting up to do something because you are forced to and living in fear (in essence, resisting a worst case scenario rather than moving towards what feels positive), acting out of necessity and lack, begrudging every moment, wishing you were somewhere else or doing something different with your days, so little time left to pursue your interests and talents, feels utterly abhorrent to me, like thinly disguised slavery and a criminal waste of the gift of life.

It makes no sense to my black and white thinking, and it bewilders me that an entire culture has been built off the back of it. That we enthuse our kids and tell them to pursue their dreams these days (we didn’t always) and yet the majority get whittled down to size to wedge themselves into some role that bears no resemblance to what their hopes and dreams imagined, so that they can pay the mortgage.

So some not so insubstantial part of my psyche abhors it, fights it, wrestles with it, screams the unfairness of it, wants to lift the roof and expose it and, increasingly, I just can’t bear to be around it. Which is why I have to get out, to some place where people live for other reasons, get up to another drum beat, follow their own hearts for the majority of their time and not just at the weekends.

We found that in spade loads over the past week. In the place we have earmarked for our move, there was no perceptible “rush hour” and we got into chats with several townsfolk who said they moved there for a different pace of life and you could tell. Though they hardly sat around, they did what they did on their own terms, to their own family-friendly hours and because they had passion for it, no more and no less. When they had had enough they closed their doors. They weren’t there to be bought and sold, their very soul on the table for the highest bidder. For the early part of the week and at the end of the afternoons, everything was quiet on the high street as people went about their personal business or disappeared home when they had had enough. Yet there was evidence of lots of interests being pursued. People took their time and everyone paid attention to each other, making time to engage in proper conversation, something that seldom happens where I live as people dash about and hardly notice others around them except when they are annoyed by their presence. In fact, I talked to more people, more indepth, in three days than I had spoken to in a year back home and by the end of our week those figures had quadrupled.

Because the same thing was evident in Derbyshire where we had more good chats with local people, one of whom told us he moved there for exactly these reasons 30 years ago when he was about our age (50s) and never looked back. He is more than happy to continue “working”, and he certainly didn’t look as old as he implied, because he is doing what he loves to do, on his own terms, no imperative, no rush or pressure and when he has had enough, he closes his door. The timings on that door “10ish to 3ish” on “3-ish days a week” said it all.

All of this is making me look back and really notice the sore point of the capitalist “growth culture” mentality where I have been stuck for nigh on 40 years in the London commuter belt. Like a splinter I omited to remove from a finger, the wound has become rather septic with time and, now I see it, I marvel that I didn’t do something about it sooner. Because, I have clearly been square peg in round hole in so many contexts of my life due to unrealised autism but this has got to be one of the biggest of them all. The wholesale ditching of passion and enthusiasm for work ethos as we eject out of schools and universities to become worker drones in some giant machine fuelled by the almost inevitable enslavery to mortgage and car and all those other trappings is something I find abhorrent in the extreme and always encouraged my daughter to be wary of when she was growing up (as other parents around me encouraged their offspring to become ever more adept at the game of earning). Be happy, I urged her; find what brings you joy and if you can turn it into a way of living without killing it, or yourself, have a go. Sadly, it’s not the way of the world and my autistic “wiring” wrestles with it daily, the longer I have the visceral reminders that it is “the norm” because it really is to the people who populate where I live.

Which has provoked us, at last, to realise we have to get out sooner rather than later. Even my husband has agreed, he has had quite enough and can finally see another way, terrifying though it can be to dare to believe and take that leap. We are bringing that leap forwards instead of waiting for when it is “more sensible” and the highest risk is that we will talk ourselves out of it, out of fear caught from the contagion of fear that keeps all these other people around us enslaved to feeding the machine with all of their life’s blood. We have our cheerleaders in place; other friends and family members who have already made the break and tell us there is sunshine galore on the other side of the mountain. We hear and now see with our own eyes how others have made this work and, in joining them there, we feel we are, in a sense, rejoining our own tribe, such as we have one. Its the nearest I thing to a tribe I have ever found because we are all on this same page of working to live and not the other way around; and of only working as much is necessary, if it is necessary, and no more than is required for a simple, appreciative life. Of not consuming so much you have to keep replenishing the pot, breaking the chain and setting ourselves free.

Do many autistic people feel this way, another square peg in the round hole of the capitalist invention? I am hearing it more and more as a “thing” we share in common. Only this morning, I happened upon a podcast (perfect timing) on this very topic in an episode entitled “Burnout, survival, feeling stuck; the intersection of autism, privilege and poverty”(episode 77) in which Squarepeg interviewer Amy Richards interviews Alma, an unemployed autistic forager, food designer, artist, craftswoman and permaculture gardener (note she is very far from “doing nothing” as being unemployed probably implies to most people who hear the discriptor).

This interview flagged up many things for me. One is that autistic people tend to have to work extra hard at everything they do because of limitations and differences in wiring; so, for instance, executive function and social challenges make it extra-hard to fit in and also because we would prefer to do things differently to how so many work environments are set up, to more closely match they way our brains operate (a reason I lasted longest in the job where I was able to create all my own systems). This makes burnout even more inevitable, also demotivation as we often go unrecognised for how much extra work we are quietly putting in compared to the next person, which can limit our progression through any hierarchies of reward that are set up for employees that are seen to put in the most effort and make the most noise about it. As at school, only worse this time as it is tied to survival, all those extra hours it takes, the extreme perfectionism we put in, all the additional overthinking and worry we are prone to even when we are not at our desks, goes unmeasured, unrewarded, unsupported and unaccommodated because it is simply not picked-up by neurotypical bosses. Often, we give way over the odds, are more loyal and trustworthy than most, but are rewarded and valued the least because we are not that character who will shine at the office socials or get into teamwork.

“Its an invisible struggle, no one notices it until burn out or something else happens, we seem to be gliding along on the surface and our legs are frantically paddling underneath but no one sees that, that’s the thing” (Squarepeg podcast). Slotting the understanding of your own autism into this highly bewildering picture of how work has always felt such a struggle for you all your life, when you finally diagnose as autistic, can be such a relief but it also forces you to reappraise the world of work and wonder if it was ever a place for you…did it even have a place for you to slot into without having to drastically change your behaviours to fit in, or were you always destined to fail at it? What would you have done differently if you had known all along? I already have some ideas as to how I would have made a completely different life for myself, as a creative with far simpler material needs, if I had known. I certainly would not have lived in a part of the country where living to work is the modus operandi but would have been far further north where the cost of living is less, somewhere with a gentler community dynamic, where life is much more nature-connected and with far different rhythms to suit my natural way of being.

Always being either over or under-stimulated (another topic in the podcast) is another issue for me. I do need to be stimulated but being stimulated by the wrong things can be as detrimental as no stimulation at all. For the “right” stimulation to occur, I need to have more control over how I spend my days, how I plan my time, the kind of environment where I do my activities including a positive lack of interruptions and distractions (yet the ability to zone out with music if I choose to as it helps me to think), I need to have autonomy and independence, natural lighting and spontaneous break-outs and access to nature, also the ability to vary what I do and to do things the way that work with my visual brain, not to some other person’s strict formula, especially if that makes no sense to me. I am more than capable of getting things done, as long as left to my own devices!

I read that many autistic people (no less highly sensitive people) are enjoying work a little more these days if they are able to work from home, as some business are allowing since the pandemic. My husband is neurodiverse, though not strictly autistic, but has certainly found great benefit in this as it takes away distraction, social expectations and some of the formality of office working. One of the things I additionally struggled with when forced to be in an office, compared to the years that I worked from home, is that I have a mild form of face blindness, or prosopagnosia, a condition that is associated with autism, which makes it difficult to remember people’s faces; even worse when under duress. This means that I am often unable to match someone’s face to their name or even remember if I’ve met them before or to place them out of context, made far worse if they are prone to wearing fairly “uniform” business clothing. Time and again, this would lead to awkward situations where I failed to acknowledge someone, treat them as expected or had to play it safe because I really wasn’t sure if this was or wasn’t the same person as before, for fear of putting my foot in it (again), making me seem unfriendly or over-reserved to those I had previously chatted with when I really didn’t meant to be. My husband doesn’t struggle to meet people face to face but still prefers to engage over Teams and to not have his processes thrown all over the place by the need to travel somewhere, interrupt his day, make smalltalk or change workspace.

If more opportunities were made for autistic people to flexi-work in terms of working hours, or allowing them to work from home, I wonder if many more of them would be able to thrive in a work context. The statistics relating to autism and unemployment are shocking and discussed in the linked podcast as well as the high proportion of autistic people that are employed below their capabilities. As I mentioned, I have been “unemployed” for 16 years now, due to persistent health issues that sometimes feel as though they are protecting me from the imperative to join in if I were more physically capable or less over-stimulated, to the point of burnout, by conventional ways of working. Working feels like death to me (a phrase mentioned in the podcast). How much have chronic persistent health issues, keeping me from working, reflected that profound fear of “death”, I wonder?

If I could have based myself anywhere, even up a remote hill, and performed some fulfilling job over the internet, would I have done rather better for myself and feel less touchy about how I have failed to provide a living for myself for so much of my adult life, needing to rely on someone else to do that for me for the past decade and a half since I burned out? I went from being a success at school and doing more than OK at university (though I found the expectations there increasingly hard given my undiagnosed status) to feeling like an abject failure when it comes to “career” and that only adds to my desire to step away from a world where that seems to be the only thing that matters; where people ask “what you do” before they are even bothered to learn anything real about you, adding further stigma to all the other ways I am a square peg in a neurotypical context.

“Survivorship bias” is a phase I had not particularly heard of (and certainly not in an autism context) until today’s podcast. Looking it up, I found this definition: “Survivorship bias (or survivor bias) is a cognitive fallacy in which, when looking at a given group, you focus only on examples of successful individuals (the “survivors”) in the selection process rather than the group as a whole (including the “non-survivors”)” (Masterclass article). It goes on to explain that one of its many pitfalls is that it “leaves out important voices” including those who have struggled to succeed, in which I would include so many autistic people when measured against an ability to obtain or maintain a suitable job to match their abilities.

I look back at my 36 years in Thames Valley and realise that, for most of them, this survivorship bias has been subtly at work in the minds of most of the kinds of people I have tended to meet in day-to-day life around here, informing how I have been received in so many contexts, not least at the school gates trying so hard yet invariably failing to mingle with all the other parents, who always seemed to clump together in such easy friendships yet somehow appraise I was not worthy of inclusion on first meeting. Likewise in my neighbourhood, walking the dog and many other contexts where I hoped to make some casual yet reliable social contacts, with little success. I would always notice how I lost their interest as soon as I explained “what I do” (and what I don’t do…). Meanwhile, I have tended to ham-up my successes as an artist (abhorrent though I find that to be) to excuse the lack of a job title or the fact we are a one-income household. It has also put far more pressure on my need to succeed at art, to push it out into wider ponds where I don’t naturally belong (auspicious galleries, commercial licensing and such), when I always enjoyed it far more as a hobby rather than a business. This survivorship mindset means I still berate myself when I am less productive, as I have been these last couple of years, and feel as though I am letting the side down when I don’t paint every day (or even every month these days), though I’ve no real concept of who that “side” consists of since there is no pressure from my family. In essence, I’ve hidden behind an illusion of success because the fear of being written off by a survivorship biased community has crept into every part of my life in Thames Valley where it is utterly rife!

Its never too late to start over and, though I don’t intend to “work” any more than I currently do as a when-the-mood-takes-me artist of moderate consistency and success, I do intend to keep active and happily “stimulated” in our future life; in fact, between us, we have plenty of ideas. The difference will be the absence of pressure to do so, and the option to stop and smell the roses as often as we choose. To pace to more natural rhythms, to be around other people who live to a similar ethos and feel less abnormal, to disengage from the sounds and sights of a culture that races around chasing its own tail working to consume to work to consume ad infinitum yet often forgets how to live until its too late. We will plug ourselves into a different current, an alternate pace and see how that works for us (not the other way around). Already, as that time gets closer (because we are not messing around now; we are really doing this thing as soon as we can), I sense how it could alter everything for me, tipping the balance of how I feel about myself and about my life, at its very core, putting me back onto my innate axis instead of existing to perform badly according to somebody else’s agenda, which has got to be a good thing. In fact, everything about recognising my autistic traits and preferences and not-so-conventional way of doing or seeing things, including learning to “turn off that neurotypical voice in my head” (quote podcast), has been of hugest benefit to me, helping me to unpick all the ways that I have so abjectly struggled at life (making myself ill!) and choose a far better way…for me.

I realise, as per the interviewee in the podcast, that all I have ever really wished for is to be free; such a simple and innocent request and I never realised, until too late, that I was expected to buy that freedom back from something that had taken it from me. In fact I believed myself to be free most of my childhood, thanks to my neurodiverse family and their particular spin on the world, only to receive the shock of my life, from which I am still reverberating, as an adult. Like Alma, I’m a fan of the idea of a basic income for all people so that anything they earn over and above that is up to them but they get to have their needs met as a primary and irrevokable right, work being an additional factor if you want to attain more material things. Starvation and homelessness should not ever be punishments for failing to earn, whatever the reason. By-and-large, material possessions are far less important to me than quality of life and meeting the inherent needs of my sensitivity and health, so I was always more likely to strike a balance in favour of living, but it should not be deemed to be a sin to choose one way or the other. The growth economy obsession of the present UK government and its bullying tactics represents all that I find most abhorrent about a world that largely doesn’t care about the consequences (for instance, to the ecosystem) and which gobbles up everything in sight, people’s lives and health included.

In this next phase, like Alma, I claim the right to just “be” and not have to prove myself to anyone anymore, least of all to myself. It will interesting how this plays out, in my health and everything else from now on, as I can see it as the missing factor that has kept me from my health resilience for most of my life.

2 thoughts on “Autistic burnout and the dichotomy of “living to work” when your reality tells you it’s the other way around

  1. All the best as you both move towards this transition! Now that I’ve been retired for nearly two years, I can’t imagine how I was able to work for so many decades! Two jobs, even! I’ve kept one of them, my part-time online teaching job, but it’s entirely from home and offers so much autonomy that it feels more like a special interest than a job. I miss a few things about my other job: the long uninterrupted hours of hyperfocus that happened now and then, the validation and appreciation, the sometimes pleasant social interactions. But for each of those, the opposite happened too. Plus sensory issues, social communication issues, and having to work so hard. Even now, I find I sometimes feel I work too hard because the executive functioning challenges of keeping up a household and garden are sometimes exhausting. I can’t do as much as others or as I think I should, and I haven’t yet realized that. I push myself too hard. I guess I’m still in transition!

    Liked by 1 person

    1. I sometimes think the whole of life as a neurodivergent person is a process of “transition” which, being something we struggle with, can be so hard but then, when that transition leads us to a more comfortable place and deeper self-knowledge, its good to push through it. I imagine at some point I will be writing about how hard it is to pack-up and “executive function” the removal of over 30 years of clutter to another part of the country and do all that, hopefully, without burnout…watch this space!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s