I’m writing on this burnout topic again (third time this week) because, as per my last post, allowing myself to write each day is a case of throwing my “ADHD part” a fish when it desperately needs something to focus on, just so long as I don’t hyperfocus so much it adds to my burnout. After all, writing doesn’t require me to hold a conversation, I don’t get overly stimulated by it and it allows me to process something I am trying to get a handle on so that I’m not left with untethered thoughts spinning around on loop all the time. In other words, writing helps me to manage my burnout status when I’m not able to do much else…that’s just my way…so I am taking the opportunity to turn my focus onto the topic of burnout itself.

So today my thoughts are on the topic of how internalised ableism comes into conflict with autistic burnout and the need to do whatever you need to do to get out of the habit of it. To recap, autistic burnout tends to happen as a result of crashing as a result of a sustained period of trying to cope with the neurotypical world, rubbing alongside highly neurotypical people and situations, perhaps exposed to way too much stimulation and many conditions that call on you to mask, camouflage or suppress your normal autistic behaviour. If you are highly verbal and articulate with strong cognitive abilities, you may even seem to the casual observer to be extremely good at muddling along in the kind of situations I just described but the tilt of that statement vastly underestimates the sheer effort it takes for you to do so. If your senses have also been severely taxed (for instance, by many jarring, loud, crowded, unpredictable, overstimulating situations) or you’ve been confronted with a lot of change or the need to adapt to new situations, perhaps having to juggle a lot of things lately, all these factors can compound, especially if there has been an emotional component such as dealing with family situations, as has been happening to me a lot lately, or with work politics as another classic example.

The clue to the problem hidden in all of the above is that if it is know that you “can”, in theory, cope with these situations (either by yourself or by other people) because you have done it all before then, after a lifetime of doing so, it can become very hard to say “no”, that you now need to stop doing these things or being exposed to them…at least for as long as it takes for your nervous system to recover from burnout or the imminent risk of burnout happening.

If that lifetime has largely been spent not knowing about your autism because you were late diagnosed then you are very likely to have imbibed a whole lot of other people’s viewpoints on what you should and should not be able to do or cope with…none of which takes autism into consideration.

Now that you know and have likely gobbled up as much information as you can about what kind of things trigger your version of autism (which is going to be completely particular to you) its still one thing to know about those likely triggers and your personal thresholds relating to them and quite another to stand up for them. This is where ableism comes into the picture because when we continue to expect ourselves to do what other people do, though we are now armed with the knowledge that we are wired in a completely different way, then we are being as ableist as they are likely being, failing to take into account those crucial differences and the need to self-advocate for them.

Take, for instance, me this week…so burned out I am in a whole lot of deep fatigue, sensory overstimulation and pain (even my clothes and the bedsheets hurt!), I’m pricking tears at the slightest thing, my ability to talk is very minimal…meaning I can pretty much communicate perfucntorarily with my husband but that’s it…and I have back some of my most irritating autistic habits such as echolalia, which is an urge to repeat certain words over and over again, in my case inside my head not vocalised but its still so irritating. I’m also at severe risk of hyperfocusing beyond my energy capacity and am locked into single-minded, fairly narrow zones of perspective compared to usual. I notice that I’m wanting to spend my time in the smaller, cosier room where the acoustics are softer rather than the high-ceilinged and sunny morning room where I usually enjoying looking out into the garden. I do a couple of domestic tasks and I am overwhelmed, I stand up to go for a walk and I’m in a state of low blood pressure before I know it. I sleep half the afternoon after telling myself I will watch a film and wake up groggy and in brain fog for the rest of the day.

I feel like weeping at the thought of a couple of things coming up in my diary next week that will involve “peopling” and know I need to stop everything for as many days as I can get away with, removing anything non-essential from my path (only leading to more stress at the prospect of having to come up with relatable excuses for cancelling various social commitments). Sometimes, it just feels easier to give in and push myself through. As the weekend approaches, knowing my husband will be eager to celebrate the end of work by going out for a pint in the village where we usually (me including, right up until last weekend) chat to the friendly bar people and muddle along with any one else up for a few words or a laugh, I can hear myself saying to myself that I will be fine if he wants to do that tomorrow, that I can just pull on my boots and do that very thing as per normal…when obviously I can’t!

This isn’t such a huge example as things go (although telling myself that going out when I don’t feel up to it  is “not such a big a deal” is yet another version of the way ablism underplays what, to us, might be a very big deal indeed!) but its still an act of self-betrayal to allow these words to run through my head and, ultimately, a form of gaslighting. When my ability to make small-talk is non-existent and I’m feeling triggered by anything pretty much outside of my house, why on earth would I try to persuade myself I will be “fine” if I go out just this once? Plenty of other people might try to gaslight me to think that there is nothing much wrong with me when I am like this but its extremely saddening to think that I might ever join in. 

Another way that I know I do this is to make it wrong that I’m not doing very much with my days or “being productive” and this can be one of the most pernicious forms of ableism, one that has held me unfairly to account all the years I have struggled to hold down a conventional job, something I now realise is extremely common for autistic people but, for years, I had no idea this was a factor. When burnout is at its worst, its ridiculous that I blame myself for not being a productive member of society but I have a long track record of this and have often forced myself to deliver output of some kind (such as all the years when I forced myself to mass-produce artworks, turning something I enjoyed into “a job” as though to justify my stop-at-home status) when really my entire system so desperately needed a break from imperatives or comparing myself with other people.

What is this all about; why do I set such (for me) unreasonable expectations when I know I am well over my autistic limit? Being around chatty people, somewhere that gets noisy, hot and crowded, where even my husband will want to make conversation with me all evening and where I would be forced to mask and suck-up all the ways I am feeling overstimulated…yes,  I am sometimes game for all this and many times enjoy it  (when my ADHD part is the dominant factor rather than my autistic persona) but it is always extra hard for me, harder than most people realise, always taking extra effort and requiring a certain amount of masking or playing-down of some of my normal responses; extra effort that I simply don’t have left in me when I am this burned out. Certainly, when I am at the end of my tether, this kind of thing shouldn’t even be an expectation that I have of myself and I should stand by that, no matter how much it may inconvenience other people. Its very hard to convey to someone else, who isn’t autistic, why this kind of situation is a problem for me right now (although my husband is the most understanding of anyone and has taken the news as well as he always does)  but I shouldn’t have to explain it repeatedly to myself or to plead to be let off; nor should I feel guilty that, for once, I had to say “no”, the guilt factor often being the hardest part to live with as I tend to hold myself to account for all the ways I tend to be oversensitive, prone to crashing, unpredictable and otherwise not “normal”.

Because, when it comes down to it, most of the time, it is me telling myself I “ought” to push through and do things, that to pull out because I don’t feel up to it is to make an uneccessary fuss or let people down. I lean into the fact that I have done these kind of things many many times before to justify that I can do it again, even when I’m not feeling so great and here lies the problem when it comes to risking repeated burnout. I HATE to disappoint people or let them down. I find it really hard to explain, even to family members, that I can’t necessarily do things that they do and take for granted: take, for instance, my sister who thinks we are peas in a pod, that I’m exactly like her but I know we are not really the same as I don’t get my energy from being around people as often as possible, living for the days when I meet-up for coffees with friends, take part in group activities or going away on group holidays with a bunch of women as she does. In all these respects, though we share many family characteristics, we couldn’t be more different than we are and I’m not sure whether its because she is still heavily masking or really does relish all these things but, when I keep trying to be more like her to please her or fulfil her expectations, I am consistently letting myself down.

For me, the very thought of socialising with people outside my family, particularly neurotypical people (I have yet to find anyone, in person, that isn’t) gives me shudders and that’s just an autistic trait that I happen to have. There is a weekly meet-up of women in a coffee shop in our new village that people keep telling me (I keep telling myself…) I ought to go to but I just walked past it on my stroll and seeing all those women huddled together around a table, deeply engaged in small-talk, gave me the heebie-jeebies, its just not for me and I have tried, unsuccessfully, to push myself into that kind of thing many times before (I previously wrote about how disastrous it was back in 2019 when I gave it another concerted try). I am far happier not making new friends and spending my days at home with my husband in our happy routines than trying to do anything like that and, when I tell myself I “ought to” or that its “wrong” not to give it a try, I am being ableist to the nth degree!

When I stop to listen to these kinds of imperatives playing out in my head and the way I try to override the way I’m feeling, even in a burned state as I am in this week, in order to fulfil other people’s expectations (and my own learned ones…), I don’t even know whose voice it is because it surely isn’t mine. Its no particular person’s voice that I’ve internalised, although perhaps there’s an element of some of the things my parents  used to say to me when I was invariably reluctant to take part in things as a child (although they were on the spectrum themselves, they were of a generation that so concertedly masked themselves to fit in, also desperately trying to coerce us kids not to stand out too, that they didn’t even seem to realise it themselves) but its the voice of the whole nurotypical culture that I’ve been raised in and apparently recorded  so that I could play it on loop inside my own head!

Neurotypical expectations tend to come at all of us from every imaginable angle when we are autistic but, when we also internalise them and bounce them back at ourselves from the inside, the effect can be toxic because there is literally no getting away from that ableist voice now; its there night and day. Until I am prepared to notice that the voice saying these things is not mine and stand up to it, and to anyone else having unrealistic expectations of me given my autistic take on certain situations that bother me more than they can imagine, I risk repeatedly throwing myself back into a burnout status because I will never allow myself to fully recover. Every time anything that looks like a “normal” or so called “reasonable” expectation comes my way, I will simply roll over and surrender to whatever is expected of me, abandoning my desperate need to stop doing these things or putting myself in the way of highly stimulating and demanding situations and exposures in the name of trying not to rock the boat or stand out.

Its the same thing when I push aside all the knowledge I’ve garnered about what I can and can’t do or tolerate because my nervous system is wired a different way, only to then continue to force myself to act as though I don’t know all those things or as though they can be simply switched on or off to suit the situation. News flash: I am autistic all of the time, not just when its convenient, so my sensory differences can’t just be dialled up or dialled down to fit the circumstances. If I happen to have reached the threshold of tolerance for whatever is bothering me, I need to step away from it or do my best to reduce my exposure, otherwise burnout is almost inevitable and the risk of repeated burnouts can be severe, leading to more and more lasting health issues along the way. For instance, although a typical burnout for me would once “just” leave me extremely tired and perhaps mute for a few days or weeks, it now triggers full-blown disautonomic symptoms such as issues with heart rate and heart rhythm (orthostatic hypotension and arrhythmia), an increasing number of neurological effects such as occipital headaches and parasthesia, ever worse gastrointestinal dysfunction and mastcell reactions, significantly heightened sensitivity to more and more triggers each year and, of course, longer and less thorough recoveries. In other words, the risk I take when I try to override my autistic needs and preferences is now considerable so me happening to decide that its just not worth it on this occasion is not open for discussion…or at least, it shouldn’t be. I need to claim for myself some authority in these matters and do my best to imprint on those who care for me that when the answer is “no I can’t” I really mean it and intend to stand by it until things settle down again.

Of course, there are always going to unavoidable situations, for which I try to have a sort of contingency plan in place and, yes, sometimes I can manage to force out a bit more masking or coping if I really have to get through something…but the more times I do that, the higher the likelihood that I will be in deficit for a lot longer afterwards and I have to bear that in mind, asking is it worth it. For instance, funerals can be one of those things that call for an override, as I experienced the other week (a very long journey and a social gathering that really put me through the mill but it felt too important for me not to be there) although I have also missed one family funeral in recent months because I knew, on that occasion, that I simply couldn’t cope with it given the state of my burnout at the time. At least by standing up for myself more often and not slipping into internalised ableism, most of the time (as I used to do…), I allow my nervous system to believe that I have its back so that it doesn’t have to feel so vulnerable, like I am always going to betray it. The sooner I’m prepared to say “no” to whatever doesn’t work for me, especially those kinds of things I literally cannot do or put myself through as an autistic person, the sooner I can let the simmering feeling that tends to rise up in me when I let myself down again, which feels like I am on the verge of a meltdown and very likely to blow up in someone’s face if pushed any further, settle down again. That really helps…because, in my experience, meltdowns can be like a lit match in a house of straw when I am feeling this burned out; the only person to really suffer is, inevitably, me so they are best avoided.

One final point is that when people don’t truly understand the reason you are burned out (because they are not autistic themselves) they will often tend to judge you according to their typical ideas as to why you would need to take a break or withdraw for a while whereas, for you, there is an a-typical factor at play, for instance you are feeling overstimulated or socially burned out. Therefore, whilst you might need to cease being sociable or going to crowded places for a while, you might still be able to go out for walks or sit in a quiet cafe where no one else is likely to bother you, as I did with my husband earlier today. If you then happen to see someone that you have told you are off-limits or too unwell to meet up, they are likely to doubt your excuses or it may be too difficult to try and explain the difference. Fear of attracting other people’s adverse opinions can then become another internalised voice telling you that you “ought” to lock yourself away at home when you are burned out when, really, choosing some of the activities that bring autistic joy (this is so important as a powerful way of mitigating burnout, as I wrote about the other day) such as going out in nature, could really help lift you out of your burned out state. By comparing yourself with other people and their idea of what “being sick” looks like, you do yourself no favours at all because you inadvertently make yourself wrong according to their standards, which don’t take into account the autistic basis for your overwhelm.

Then trying to get better according to their methods is a particularly self-defeating form of ableism as it goes about things the wrong way…for you. You might feel utterly floored when you attempt to hold a conversation but have sufficient energy to go out for that hour-long stroll or, as I am doing this week, spend hours writing your blog if that brings you some sort of respite. This shouldn’t be a source of guilt or feeling like you have to lie to people or be furtive about how you have spent your day; you should be able to fully own up to these extremely valid, if paradoxical sounding, aspects of being neurodivergent whereby you tend to find some activities much more overstimulating than others and some perhaps surprising ones relaxing and helpful or easy to do (such as write 5000 words before breakfast). Wrapping your head around being disabled when you can do so many things (but, in reality, there are so many “ordinary” things you seriously struggle with) can be one of the hardest aspects of coming to terms with autism but there it is: I am disabled in some areas and both me, and others around me, need to acknowledge that from time to time!

Life with autism is hard enough without us adding to it ourselves so internalised ableism really is one to watch out for. I strongly suspect we all do it to some extent; its very hard not to when everything we have ever been taught by parents and at school, by our culture, everything we see coming at us from various media and so on, comes at us through the filter of neurotypicality, telling us all the neurotypical things we should be doing and measuring ourselves against, what responses to situations are “normal” and so on. At least if we have our own backs, we can look forward to the day when we don’t personally add to all that external pressure any more, which is one less thing conspired to lead us towards repeated meltdowns and without which added pressure we are much more likely to recover from a state of meltdown when it happens.