Since my burnout event, almost two decades ago(!), the premise has been that all of my problems are because of my chronic health issues, precipitated by an acute period of stress, so that if I could recover from those conditions (fibromyalgia etc) everything would return to “normal”…
Whereas, actually, it’s more the case that everything has been either a direct or indirect result of undiagnosed autism (I will qualify that some more shortly). Therefore my health can only recover its footing once I address that truth about myself by making amends and adjustments for a lifetime lived according to just so many false premises and expectations (both mine and other peoples’). Here’s the qualifier, if I have experienced trauma, bullying and abuse, general overwhelm, unrelenting stress, isolation, executive and sensory overwhelm, numerous physical anomalies that defied conventional medicine or appropriate diagnosis, anomalous reactions to medications and all the rest, leading to chronic health breakdown, then all of these factors can be attributed to having made a long and arduous stab at a “normal” life whilst being unwittingly and fundamentally different and in so many ways invisibly compromised by my inbuilt contrariness to “normalcy”, its behaviours and expectations. The problem hasn’t been my autism but the factor of my autism in the context of an allistic world!
The thing about burnout is that, once you’ve reached that point, it’s very hard to recover and, like climbing up the sides of a well, extremely easy to fall back to that position…potentially for the rest of your life, on repeat. Which isn’t to say you have to spend the whole of your life at the bottom of that well but that its going to be much easier now to find that you are on the slide downwards, unless you learn new parameters and how to live by them.
Those parameters, for me, have started to look a lot like the very parameters I would have organically chosen for myself if only I had realised I was autistic at a much earlier stage and been in a position to live according to them (that last part remains difficult, realised or not, in a world setup to be user-friendly for neurotypicality and not for us).
You especially have to become very aware of your energy and exposure perimeters, once you have suffered burnout, and you also have to locate the right foot grooves for climbing your way out of the well. Misidentifying what caused your burnout in the first place will only get you so far up the sides before falling back in again. In my case, identifying undiagnosed, thus unaccommodated, autism (not autism itself) as the root cause has been key. Without that understanding, I was only ever going around in circles or falling backwards.
So whilst autism may not be your particular thing (it could be high sensitivity or introversion or ADHD or childhood trauma that led to burnout, for instance), whatever your core issue is, you have to come to understand the interplay of this thing, in my case autism, with your overall health, energy and wellbeing. That takes further self-awareness and research, including listening to the comparable experiences of others you may relate to (podcasts, blogs, personal accounts of late diagnosed autism etc can be invaluable). By building a picture of what you have been dealing with, possibly all your life in the background of your other story, you’re better placed to create a more realistic and self-inclusive picture of the future.
The concept of “planning for the future” is an extremely loaded topic for anyone and can lead to some aversion tactics to avoid contemplating our own sovereignty when it comes to our ability to influence a change of trajectory or a very different outcome, going forwards. We can feel extremely daunted by our own power (a much misunderstood word) to make small but important inroads towards a different kind of life and, of course, it can feel easier to play the victim or stay put where it’s more familiar, especially if familiarity is our safe place. However, to progress in my life, I know I need to envision an autistic future from now on; it’s, quite simply, the strongest handrail for pulling me back up to my most vibrant health and is already paying dividends.
This progression relies on possessing a further level of understanding: certain things won’t ever “go back” to how they were because they are an expression of the autism that can no longer be denied the space to breathe or to reveal itself in broad daylight, as a most integral part of me!
I now realise I was always struggling with overwhelm, sensory processing issues, anomalous sensitivities, not fitting into the usual paradigm of life, social deficits, executive challenges, the requirement to mask to get by as a “normal” person etc and now, to even have a hope of recovery from abject burnout, I need to address those hardwired challenges within the context of living in a dominantly allistic world, not sweep them straight back under the carpet.
The latter is a trap I often fall into when I envision my hopes for a location change, a largely speculatary place (though the image is gradually becoming more concrete) where I always imagine myself claiming my most vibrant health. If my vision of that relies upon imaginings of social interactions and collaborations based on an allistic way of life (gathering with neighbours, joining in with group activities etc) without accounting for the sensory, social or preferential differences that make up my autism then I am, in fact, imagining somebody else’s future, not mine.
Our culture paints some very strong pictures of what the ideal life looks like, especially post-50 as people start to contemplate slowing down, and we all tend to buy into those projections to varying degrees, whether we realise it or not. There are also niggles that seed in all of our minds as to what “old age” would look like if we didn’t have a friendly neighbour to check up on us or other support systems in place; yet what that looks like for someone who really likes their own space and doesn’t like spontaneous or overbearing gestures may be very different to the picture other people paint.
Here’s another thing: I think disappointment is one of the most profound and compounding emotional pains of my life (alongside frustration, as shared before) and I can even connect that kind of pain to my autism. I suspect that, because I am a visual thinker, I tend to invest much more fully in the ways I would like things to be or even how I feel they ought to be (if only the world wasn’t so illogical and obstructive) because when I think that thought it is a fully visual and immersive experience in my head. When things don’t work out the way I’ve clearly envisioned them working out it can be a very deep and powerfully discombobulating wrench, as though I’ve really had this thing and it’s now been taken away from me. Talking to another neurodivergent person that I know extremely well recently, I realised that she is also like this as it can take her extra time to recover from a disappointment that, to anyone else, would seem no more than an academic setback to shrug off because the thing was “only an idea” to them but a fully investable vision to her. This is exactly how I am; making the process of allowing my mind to contemplate the future a highly precarious territory to wander in….since life so loves to disappoint!
I also suspect that a great deal of human pain, in general, comes from an almost spiritual longing or desire to return to a sort of original state, as in, a “place” where that person would feel as though they most naturally belong or feel fully “at home” without having to make so many compromises. For anyone living as an autistic person in a dominantly neuroptypical world (a life no-doubt bursting with compromises), this longing can feel extra profound and it’s vision all the more elusive. To get even close, you have to get very real about what your particular “place” would look like and then dare to sift through the likelihood of that before taking some radical steps to bring it about. In short, you have to work harder than the next person and have much tighter criteria, organised in order of priority, that you won’t compromise unless forced. I realise, my husband and I have been doing this concertedly, lately, and while we have put in the homework (much more consideration than most people probably put into all the fine details of their future life, I daresay) the realisation of the dream is still most successfully alluding us!
Pain, of course, is a sign you’re completely off track…chronic pain a sign you’ve been living there for way too long. Your energy has got stuck; you are out of the flow of life. Thus the search for a new “home” can be synonymous with recovery. I’ve written about the links between chronic illness and neurodiversity before (see earlier post) and this is surely one of the biggest connections; between pain and a fundamental inability to find your comfortable place in the world. On the upside, your pain may have been telling you what’s not right, what isn’t working so that you can figure out what is and would and, in this sense, it has been “helpful”. This is how I tripped upon my own autism in the first place (so, thanks for that, pain); without it, I may have bumbled on without realising for many more years. Not everyone has physical pain, of course but if you are late diagnosed autistic it’s likely you’re an absolute expert in what hasn’t worked out for you in your life!
When this pain or otherwise catastrophic realisation reaches burnout point, it’s an example of “positive disintegration’ (look up Dabrowki’s theory), a point from which you get to rebuild your approach to life anew, compounding all the information now gathered about what kind of life would actualise you in the most authentic sense. Dabrowski and his followers believe that authentic personality development has to come from conscious examination of self and by building your own set of unique values which reflect your character and personality; surely, realising your autism and discarding what was a failed attempt to live to neurotypical values and behaviour models is such a progression. Other people may call it a spiritual wake-up call on the journey to greater authenticity. Whatever you call it, it can be a powerful point along the way; as long as you don’t set up camp in the burnout zone!
The point is to learn and to move on from there. I know I have to envision a future that is uniquely mine in order to manifest such a life, with my best health intact. When I don’t at least try to aim for that then I can be sure many more stumbling blocks will continue to litter my path.
It’s one of the many gifts of my autism that I have this ability to picture what I think about in my mind. It can, however, be accompanied by great intensity, a trait so many of us neurodivergent types seem to possess (see my other posts on this). I tend to think that if I throw all of my intensity at something it will go my way, but at what cost and then what happens when it doesn’t work out; where does all that intensity go? From experience, it can lead straight back into burnout…in effect, burning me (intense disappointment can be a dangerous and unwieldy thing). Being aware of my autism (and high intensity) enables me to be mindful of that risk, at least.
It can also come along with the strong tendency to hyperfocus on what I want, to the exclusion of all else. If I forget to employ my equally valid “big picture thinking” trait, I can allow myself to get taken off down a track that ceased to be viable a while ago whilst missing out on all the benefits of possessing an exceptionally pragmatic brain. Once a route ceases to be viable, I need to be able to switch my attention to other possibilities. Getting myself to take pause for long enough to allow a few moments of circumspection to land in my otherwise highly fixated mind can be a valuable safety valve, one I am calling on today as it happens. From time to time, I need to actively “snap out of” the hyperfocus to remind myself that the intrigues of life are just a game I got over-embroiled in. So if I have to, basically, force myself to stop everything or do something different for a day to regain perspective then that’s what I have to do, especially where something as important as making major life-altering decisions is concerned. A reminder that fixating on these kinds of things has more repercussions than, say, hyperfocusing on a hobby is something I have to set myself, even if the neurology behind it is basically the same; I mustn’t get addicted to the wrong outcomes and insist on them happening long beyond the feasibility point!
The need for a fixed timescale can also be a trip wire for me and others I have heard talk about their autistic foibles. Making big life changes can seem so open-ended, with one thing dependant on another happening in a great big long chain. My modus operandi as an autistic person is to like to feel in control of my own circumstances and to, if anything, over-schedule when I expect things to happen (or demand to know “why not?” when others don’t seem to share those timescales). When my plan isn’t happening or feels swept out of my hands, I can sometimes flip back into other areas of self-management in familiar fixation zones such as diet or health (for instance putting the two together could lead seamlessly and extremely covertly into a “need” to follow some new healthy eating plan…when really it could be a distraction from feeling spun out of control in other areas of life). The link between autism and eating disorders is quite strong (though, I would imagine, motivated by somewhat a-typical “reasons”) and I suspect the link between autism and chronic health issues could be similar when that health crisis has become a sort of “special interest” or “expertise” zone where certain behaviours get justified by the illness and offer the feeling of being in control of your own circumstances.
My vision for a future life would ideally incorporate less health or body oriented “special interests”…without resorting to the almost complete disregard for my own body that predated my burnout event. If I could feel somewhat in control or as though I have agency over a valued and positive area of my life (ideally not just to do with health) this could be a way of coping with a largely uncontrollable world “out there” and would be an important factor of any future life I could envision.
In other words, as long as I keep autistic-me in mind and don’t sell her out to an allistic vision of the future I know I won’t go far wrong. As long as I remember to picture myself in the image I create, and not some other person projected from all the other non-autistic people I have known and been influenced by all my life (bearing in mind most mature autistic people have likely spent decades micro-studying other people’s behaviours and preferences), then I can be sure this is my life I am curating. Opportunity will arise and I will know it when I see it. Whilst I know that I don’t do so well when I don’t have a definite future lined up ahead and that I thrive on routine and predictability, I can hopefully start to trust that all the same tenacity that got me through five decades of not realising about my autism, yet always knowing somehow that things were always extra hard for me and that I had to cover the extra yard, will get me through it all to the other side of any big transitions that have to take place along the way.
A much more customised life awaits me just as long as I keep my priorities straight. Minimised artificial sensory stimulation, compared to the ever- more overstimulating world, is worth far more to me than some aesthetic detail or other minor compromise. Finding a place where there is a comfortable sense of having supportive and friendly people around me, as a largely “felt” sense of community with the occasional smile or wave, more so than an actual need for people to be knocking on the door every five minutes or feeling pressurised into a neurotypicallly oriented social scene, would be by far the best scenario.
If I’m still dreaming of the kind of new ventures that are always going to be highly collaborative, competitive or group-oriented (for instance, I’m an artist and some of the pursuits I’ve looked into are inevitably going to be that way) then I’m likely barking up the wrong tree (or, repeating old mistakes, which is the definition of insanity). If I can see myself working independently yet hooking onto, say, an art trail that makes me part of something bigger whilst retaining autonomy and having just the right amount of people-interaction then I know I’m onto something as my energy lights-up when I think about it. Above all, I look forward to carving a much more tranquil space in which to write and create. Most of all, I just need to be able to envision autistic-me living and thriving on a daily basis with no need to pretend or mask that I am otherwise.
Such a life exists out there for all of us, if we but use our inbuilt guidance to navigate towards it. In the meantime, each day that we already live like that , to the best of our ability and without apology, is another step on the way; think of it as a small cog turning a wheel in a much bigger machine that will get us to our best autistic life.