A great quote I heard on a podcast, attribution not given: AuDHD is like a pair of siblings (twins) dragging each other across the floor by their hair!

I want to think outloud a bit today as a chance to look at the intersection of AuDHD and ME/CFS…because there certainly is one, for me at least (and I’ve heard a few other people mention having such a crossover in the forums). An intersection or meaningful coincidence has never felt more obvious to me than at this time, around my current burnout (since autistic “burnout” is yet another word I could so appropriately use for my current ME/CFS crash).

So, how did the ADHD part of the equation play out in the buildup of this latest crash, as touched upon in some of my recent posts about post exertional malaise (PEM), and what does my autistic factor have to say about it all, since there is always a bit of push-pull going on between the two of them? Is there a sense in which I can almost say my autism is now getting what it wants out of this abrupt and decisive need to slow right down and aggressively rest, to pull back and stop allowing myself to be so overstimulated and overstretched all the time? Is that how the two factors…ME/CFS and autism…conspire together, perhaps in the absence of any other way of successfully getting me to slow down or stop? If so, what can I learn from it about the needs of my particular version of neurodiversity, so I can avoid repeatedly burning out in the future?

I’ve been trying to get straight in my head the situation with pausing my weekly physio treatments, aside from the matter of my ME/CFS flare and extreme rolling PEM having stopped them in theirtracks. Because, right now, I am ultra resistant to the idea of resuming those weekly treatments that I was just so optimistic about at the start, even once I start to feel a bit more stable, assuming I do any time soon. Its hard not to feel like the recent crash was a statement declaring that I wasn’t meant to be pursuing the physio at all since they were such a big reason for the rolling PEM I got into for weeks on end. Another factor is that I am always always always demand avoidant about appointments and particularly demands that are made of me every single day, week or whatever (regular time interval) as I simply don’t work well with such time commitments, it always drives me mad and avoidant sooner or later, however enthusiastically I start out!

So, is this just another one of my failed new projects in the graveyard of just so many abandoned projects that are par for the course of living an AuDHD life? Thankfully, because of my autism, most of my projects get to be super well-researched before I progress them beyond the initial idea and this one was no exception and yet its felt, so far, like an unmitigated failure because, instead of getting much better, I have become so fatigued and unwell that I’ve experienced one of my biggest ME/CFS crashes for years…not all due to the physio but it certainly contributed a large part of the overwhelm and extreme PEM I was experiencing right before the crash happened. (By the way, when you look up the question of whether physio is even appropriate for people with ME/CFS, the answers are unreassuring and inconclusive because of this very risk of triggering rolling PEM from the overexertion of it, similar to the known risks of exercising, so I am not alone in finding it problematic.)

Once I restabilise my health enough to get out and be active more (and, again, this is making a big assumption because I am not there yet…), the assumed premise is that weekly physio treatment will resume but I’ve got such reluctance, such resistance and such wariness persisting in me about getting back into the weekly habit of it. I’m really not sure it’s benefits outweigh the many negatives of disrupting my entire nervous system once a week, the severe sensory overload and overstimulation spilling out for many days afterwards, which then takes me the whole time in between sessions to recover from. Maybe I could cope with going less often, at some point in the future, but I have to seriously question even this, before making the same mistakes again…is physio even right for me in the first place?

Which flags up a question all of us autistic or AuDHD folks need to ask ourselves: is whatever repeat thing we are doing or exposing ourselves to (which may or may not yet have led to or threatened burnout) really far too much for the autistic part of our nervous system to cope with or sustain; are we setting ourselves up for repeated failure by not listening to or accommodating our own sensory needs, bulldozing them just the same as any neurotypical person on the outside might when we should certainly know better? Whether this thing is a job, a commitment, a relationship, somewhere we live, whatever, these questions are always worth asking if burnout is something we hover around a lot of the time.

And I do think that, with AuDHD, you need rest…lots and lots of it…and that it’s perfectly ok to need that rest, too, without any blame or constant self-criticism but the key is to accommodate it, to make sure your life has room for it. I shouldn’t be giving a rest period like this one, where fatigue is so severe that it has knocked the very legs from under me, an expiry date or overriding that continuing need for it, ever, if I’m truly listening to my body from now on; I should allow it to tell me when its had enough and is ready to resume (and to what it is prepared to return) or risk the same dire consequences playing out on repeat. Restorative rest for us mixed neurotypes may take much longer to achieve than we imagine, measured against the typical population, but then we have so much more going on with our nervous systems than the average person, all of the time, so is it any wonder we need to have spade loads of recovery time?!

In the half light of an August dawn as the glow starts to appear over the window ledge, which is often my clearest time for thinking things through, I know the problem is mostly this…after the year or so that we’ve had, I crave, no I NEED a quiet, less stimulating life as a sort of medical emergency. As my nervous system laps up these extremely gentle days on repeat, I know I don’t want them to end and the fact of imagining them coming to a cliffhanger edge in September is bringing me the same feeling of dread as going back to school used to give me, every year, as a child when the summer hols came to an end.

Difference being that now I have a choice…so I need to make the right one and for the right reasons. It becomes an exercise in self-compassion…and don’t ever underestimate the power of self-compassion to heal all kinds of glitches in our health (perhaps more so than any number of physiotherapy sessions ever could). Sometimes, we just need to stop everything and let the body do what it does best!

I can also quite literally feel the sun coming up on different feelings now…a better emotional and energetic state, more optimism and stability and calm than I’ve had for quite a while, an almost intangible state of settling down into the ground and putting down roots, of healing myself just from pausing long enough. I am feeling more like myself now than for a very long time plus something new and the feeling is growing because I know and understand myself so much better than I ever did before. Why would I want to interrupt such a powerful organic process, to tear it up, just because a little voice in my head tells me I “ought” to get back to my old routine, my commitments, whatever, and stop messing around? If there is one thing the last few years of coming to terms with my AuDHD has taught me it’s to not assume that any one thing (especially not the more obvious thing, that everyone else would do…) is right for me and to question everything anyway, however logical, because there are multi facets at work inside of me, all of the time. Complexity is the name of the game with AuDHD: pull on one string too hard to make it tighter and another part of me will inevitably become more loose…its the way I am made.

Going weekly into the big city for treatment which (on one level of my neuro-spicy mixture) I can really enjoy or even crave in short bursts of dopamine top-up, unfailingly overstimulates me when it is so regular that it takes days for my nervous system to recover only to crash once again. It seems, at the surface, like just a brief interruption to my usual routine, no big deal, but the trip is actually overwhelming for me and takes a whole day because its quite a distance there and back, plus the build-up and after effects are far more disruptive to my overall sense of calm and stability than they might obviously seem to a neurotypical observer. Like I wrote about recently, even the car journey as a passenger is far from “energy neutral” to my hyper-sensitive constitution. Besides, going back and forth only reinforces the feeling of still being unsettled, as we were all of last year during our long house-move (which certainly contributed to my burnout), whereas I long and crave to achieve stability in our new chosen place.

These constant interruptions keep me from fully immersing in the rural location we have chosen to live out the rest of our lives, prolonging the state of constant postponement and disruption that characterised the whole elongated house-moving process. Yes, whilst all that chaos was happening, I got some dopamine tank-ups from trips out to the city that sometimes pushed all my buttons in a distracting way but I was in survival mode back then, not so now. Besides,there are other ways I can easily get my dopamine and which are far less disruptive on such a regular basis; to just accept the big, obvious doses of dopamine hit that lack subtlety and come with such dire consequences to the overall state of the nervous system (especially when prone to PEM) is like trying to fix something with a sledgehammer. Its how I used to get my dopamine fixes in the old days, when I was much younger and there seemed no choice except to go large on the stimulation to keep the adrenaline up enough to push through all life’s demands but I can’t cope with any of that now!

The knock on effect of this weekly disruption leaves me feeling extremely time poor because, not only am I overstimulated to the nth but (no longer ignoring the ME/CFS part of the equation) I’m utterly, systemically exhausted from them, thus I find I’ve used up all my tokens, everything I’ve got, on this one excursion per week and have nothing left for what I actually want to do for the rest of my time. I think most neurodivergent people will relate to the statement that not having time left for our own interests and hyperfocuses can leave us feeling severely emotionally disregulated and this has been more than true for me, for quite some time. So, another good question to ask, is the thing we keep doing or exposing ourselves to depleting all the time and energy we have left for our own interests and how is this impacting our emotional wellbeing, is this kind of invasion even sustainable in the long run or is it another factor risking severe burnout, sooner or later?

Seeking out treatments that are themselves highly disruptive and even provocative to my highly autistic and sensitive nervous system is also not necessarily the right manoeuvre right now and will only become more chalk-and-cheese challenging as the winter season takes hold of my seasonally affected body, making it even harder for me to be touched or manipulated and more tired and in pain if I am manhandled. When I ask my instincts for advice, I am forced to concede that this body has taken some very hard knocks for a couple of years now and just needs to be allowed to “be” for the foreseeable future; there should be no race to “fix” it when it’s not even been given ample opportunity to fix itself. It’s so easy to assume we have to intervene or “do something” to get well…though that feels like an extremely neurotypical point of view…when all it might take is getting out of its way and allowing the natural course of recovery and rest, of being left alone and to own devices, and then let’s see what manifests.

Then, inevitability, there’s the social factor of going to someone else for help (don’t ever underestimate the social demands that result from pursuing treatments; they are every bit as demanding as attempting friendships or having work colleagues to contend with, which is possibly an underlying reason why I have sought far less interventions since realising my autism than I ever forced myself to suffer beforehand). At first sight, this particular client-therapist relationship seemed like a good fit because we are both neurodivergent (she is ADHD) but the rub is that she is not also autistic and therefore not quite ADHD like me, an important distinction (reminder: having met one neurodivergent person means only that you’ve met one neurodiverse person…we are very far from being all the same).

Seeing someone weekly who is so ADHD that I would count her as one of THE most highly wired and chaotic people I’ve ever met (where I have the tempering factor of my organisation and routine loving autistic factor to calm me right down), who then litters me with stream of consciousness text messages all week long and then forgets what we are trying to achieve in a session before we are ten minutes into it, leaving me very little space to say my own piece because of her incessant talking, also does me no favours because I come out feeling spun-out and chaotic myself. I’m noticing how I’m in a phase of demand avoidance around any unnecessary people contacts right now, during this crash, especially if I find them particularly hard work, demanding or over tiring and it’s a clue I’m really not coping with the hour-plus of weekly meetings that end up leaving me burned out socially, on top of the numerous physical demands of the sessions.

So I would urge you to ask this question of yourself, if a situation that is meant to be helping is actually overwhelming you more than its helping you make progress: is it too much for you, too mentally, physically or emotionally stimulating, pressing buttons and resulting in repeated fatigue or symptoms that suggest your triggers are increasing, not backing off? There are some positive forms of stimulation to be found, yes, and sometimes its an inevitable part of seeking help that we become more stimulated in the process; but it is just so easy to be led off down a path of becoming overstimulated thinking you can cope or must push through when you can’t, most especially if you are AuDHD, meaning there is always that other factor to appease…the autistic side!

Yes, I am enough ADHD myself to get a lot out of positive bursts of (over) stimulation sometimes but this isn’t one of those phases. I’m utterly hung-over with the overstimulation of the last couple of years and the last thing I need is more. My highly autistic nature, which has been dragged through the mud and over the hot coals of the recent disruptions to every aspect of life, NEEDS to be allowed to stop…then, even after that long pause, to slow right down and, mostly, to detox from anything that counts as an excess of stimulation, a serious provocation to my sensory sensitivities, an affront of my need to carve routine out of my life and enough quiet and space to go with my own natural flow or even a safe place away from unnecessary demands upon my time…which means pretty much dropping anything outside of my control, as far as is possible (there will always be organic sources of unexpected overstimulation but it’s this urgent need to limit whatever can be reined-in that is literally shouting and pleading with me right now). This is what my current burnout is telling me, loud and clear. Its not being a control freak…its learning how to live better when you are autistic. When asked, we generally know what is best for us, what we can cope with, what is too much…and we need that to then be heard clearly, by others and ourselves.

Last night, I overheard an argument coming out of a neighbour’s house over the wall…impossible not to hear it…as the little boy of about ten, who I suspect from frequent observation and my ability to relate, may well autistic, was extremely upset.

His mother was telling him in no uncertain terms that he has to spend tomorrow at the park, like it or not, and he doesn’t want to go. He was reasoning, quite reasonably in my book, that he’s had an extremely tiring and busy day today (plus it’s one of those wipe-out rare heatwaves that are so typical of British summer…the sudden heat so incongruous that the abrupt change has us all panting flat-out on our backs) and that he NEEDS a quiet day at home tomorrow to recover. He was not just saying that he would prefer a day at home but that if he doesn’t get one he literally won’t cope and, frankly, he couldn’t have been more convincing if he’d tried and yet he wasn’t being heard in this argument at all; the retorts from his parent were repetitious and unchanging, the park was happening to him, like it or not.

In spite of his pleading, the argument continued on and on (and I heard it resume this morning), the mother pressing on with her mantra that he simply has to spend the day at the park (making me wonder why this was just so important to her, what was she getting out of it?), the boy beside himself with emotion as he pleaded and begged. I heard him telling her how much going to the park takes out of him, how the other kids cajole and bully him, how exhausting it all is being outside in the bright park all day with no respite, no quiet time, no time for his interests…he really made a good case through his sobs and tears. He told her she was “really REALLY” upsetting him, that he couldn’t stop crying, that she was breaking his heart because she wouldn’t listen, that he felt betrayed (quite an articulate kid, this). Some part of me snapped inside as I heard and felt his emotion because I knew I had been there many times…overtly, in situations when I’d ever had to plead for something to stop (not so much as a child but certainly in my former marriage…) and continuously, inside my own nervous system, every time life gets too much, too busy, too stimulating and the autistic part of me is trapped inside, pleading and sobbing and feeling ignored underneath the surface, begging to be left alone and allowed to just “be”.

It must have felt like this for most of the last year, with everything shaken up and no routines to contain it, always too much going on, never any proper respite from the constant adrenaline parade. It was like having a penny drop as I made the association between the boy’s outpour of emotions with how my own autistic sensibilities frequently feel, I suspect: yet how they probably also feel mostly ignored or over-ridden, as though they too are just a silly child who doesn’t know what’s best for them.

There wasn’t much I could do about all that at the time we were in the middle of our relocation process but I can do something about it now, and in life going forwards. The more I take pause, the more I see that, when I don’t make room for my autistic preferences, when I don’t accommodate them appropriately and especially if my ADHD factor takes charge or overstates that its OK and its managing, that it kind-of likes being on the go all the time, the more THIS kind of health breakdown happens, which isn’t to say autism is the cause of ME/CFS but that its a cofactor that potentially rakes it up to a new crisis again, whenever things get too much for my overall nervous system. You could say, they sort-of work together!

It’s all too easy for my ADHD impulses to get what they want; they have the element of surprise on their side…some enticing opportunity comes along and my ADHD factor love nothing more than to say yes without even negotiating with the rest of me. Sometimes, I even enjoy this unexpected part of me because it’s not meant to be the dominant side of life, merely the thing that adds interest here and there and keeps me from becoming dull. Its more like the spicy seasoning that adds complexity to the full flavour of my neurodiversity!

Whereas my autistic nature is right there at the core of me, in some ways it feels more fundamental than anything else, and it will always, eventually, have to have its own way or I start to fall apart. Override it and I will eventually implode or burn out or simply wither on the vine. I can sustain going against its grain in smallish highly necessary bursts, in order to push through for some big event (like moving house or a family social) but not for too long…or the consequences invariably get messy, my nervous system becomes terribly frayed at the edges and then suddenly gives way utterly. A bit like the way I am now and I have seen this happen more times than I can count. Its a track record I need to put an end to in an effort to avoid the increasing severity of these health crashes!

And I hope the mother of the child next door realises this before she pushes him too hard, beyond his natural inclinations, into his teen years and beyond or he internalises her teaching; some of us simply aren’t made to hang out with all the other kids or be outside doing what “normal” people do all day long, we need to cater to our sensory needs and our longing to be allowed to find our own interests and routines….or we break!

By chance (though not really accident, I suspect…) the “chronic years” have enabled me to carve a quieter, more routine life, just the way my autistic self likes it the most, than would otherwise have happened these last 20 years, though always compromised by the highly overstimulating place that we lived and the fact I was a hands on parent for most of those years …a factor now solved on one hand and moved on from on the other. Now there’s just the two of us and we are in a very different place; a place that we couldn’t love more and which suits my AuDHD nature to a tee because it has enough to provide gentle dopamine fixes on a regular basis without ever overdoing it yet is peaceful and soothing in the extreme.

I was fortunate enough (oh how I thanked my stars yesterday!) to be brought up by parents who didn’t push me to do “normal” things. They never questioned or coerced me over the fact I didn’t choose to hang out with all the other kids in the streets or the parks over the summer break or at any other time. They never made me feel weird or lazy for preferring to stay at home. For years, until I found a special friend and even after that, I spent all or most of my time in my room or in my own back yard doing what I did, reading my books, pursuing my hobbies, content in my own little world.

These last few weeks of health breakdown have also been somewhat like that…not at first, when I was too severe to do much at all, but now seven weeks in I am naturally back to reading so much more, doodling sketches for the sake of sketching (funny how that urge came back once I took all the pressure off it), picking up bits of craft when the urge strikes without telling myself I have to, or writing like this when the urge bubbles up…there is never any pressure now. I’m also lapping up all the peace and quiet, the simple but abundant beauty of where we now live, the deliciously slow-paced village life, the garden and the wildlife and the big expansive skies fringed by gentle hills outside our windows.

I never needed more than this…not then, not now…and anything that intrudes on that on a regular basis is likely to hit-upon a degree of demand avoidance inside my nervous system, which may end up looking like burnout or health crash when it gets ignored beyond the pale…because, just like the boy next door, my body is currently shouting out (the only way it knows how) that it’s overwhelmed, it’s tired, it’s overstimulated, its had enough for the time being and it desperately needs quiet time plus it’s very heart is feeling broken from not being heard for so long. Time for me to show it some love then!

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.