The last handful of weeks have been extremely hard on my nervous system as an autistic person, there’s no denying it.  My routine has been blown to smithereens, including by all the additional sensory exposures at home due to sharing the house with my daughter and, for a while, her boyfriend over the two week easter break which is no reflection on them so much as its is a case of pointing out how a difference in “style” of living can come into collision with someone who relies heavily on domestic “sameness” and things being orchestrated a certain way. This one key thing, in other words the loss of my (sensory) routine, can throw my health off-kilter more than any single other thing on the list since establishing preferred routines and exposures in my domestic environment (or, equally,  non-exposures when I know I absolutely need avoid certain triggers!) is how I keep myself on the level, health-wise, thus I rely on it utterly; you could say its fundamental to me.  It’s one thing to expect disruption when staying somewhere else for a few days but, at home, I do rely on these preferred conditions being pretty much guaranteed or I very quickly become burned out at every level and the cascade of effects can start slow but sort-of smack me in the chops by the end of the disrupted phase.

Add to this factor yet another long distance trip away en famille last week (only two weeks after the long-distance family funeral we went to…), this time to visit a very distressed elderly parent in his care home who is not doing so well and who has us deeply saddened and concerned, the kind of pernicious worry that gnaws away at you for months or even years when you have senior members of the family reaching that horrible stage of rapidly accelerating frailty and loss of independence. I should mention, I also find this topics highly triggering as someone who has planted, at the back of their mind, the ever-growing knowledge that we ourselves are not so very far away from our own senior years which, for me as a neurodivergent person, are likely to be even more of a minefield and unknown quantity to navigate than for the average person, especially as someone who insists upon autonomy as yet another fundamental of wellbeing (I would rather anything happen than to end up in a care home such as the one we have been visiting, though it is the best of its kind). To say that “old age and infirmity” is a topic that really stirs up my pot is an understatement so, having had this pressingly on my mind for a few days, you could consider me well-and-truly stirred up!

In order to be there for a few days, we were staying in accommodation that turned out to be far less-than its description, comfort-wise (including the fact that this “boutique” cottage turned out to be on a road junction with traffic so heavy it very-quickly triggered my nervous system back to some of the sensory responses I used to get before we sold our noisy old house, something that was as fascinating to behold as it was distressing as symptoms switched back on). Multiple meals out, by necessity, for the entire easter period, which really messed up my digestive system, plus far more need to be “sociable” with various family groupings, have all taken their toll on me so then to come home and spend evenings with bright lights switched on in various rooms, different cooking smells to usual, things being moved out of their familiar places, far more mess building up in the house than usual when I am such a clean-and-tidy freak, not to mention conversations about some highly triggering things and not always at the best time of day given my need to wind my nervous system well in advance of bedtimes…lets just say, the collateral from sensory disruption had built up more than I knew until, now that its all over, I have collapsed into a very physical version of burnout this week with a feeling that suggests all of my chickens have come home to roost from what has been an extremely demanding few months of our lives.

You may note I titled this post “sensory burnout” because…at the moment…it doesn’t yet feel like the full all-consuming burnouts I had in the past. However when my senses become badly compromised or over-egged it’s a sure sign that I’m on my way to a full burnout and that I have to be very careful now. When full-blown autistic burnout happens (which, in hindsight, is what occurred to me 19 years ago when I was forced to stop everything, work included) it can be as a result of severe mental and physical exhaustion as a result of having to navigate a neurotypical world. According to this article on Spectrum News:

“Some autistic people experience it as an overwhelming sense of physical exhaustion. They may have more difficulty managing their emotions than usual and be prone to outbursts of sadness or anger. Burnout may manifest as intense anxiety or contribute to depression or suicidal behavior. It may involve an increase in autism traits such as repetitive behaviors, increased sensitivity to sensory input or difficulty with change. Burnout can sometimes result in a loss of skills: An autistic woman who usually has strong verbal abilities may, for example, suddenly find herself unable to talk.”

The very fact that a couple of those items on the list are happening to me now, many the exhaustion and sensory factors, is a warning sign that I have to tread carefully.

Since yesterday, the first day “back to normal”, all of my senses have been in a state of high-sensitivity, with neuralgic pains and highly sensitive skin….so much so I can hardly run the back of my finger against my own face without it feeling like a burn and all my clothes are rubbing in all the wrong places, plus a total intolerance of extra-stimulating things like simply holding my electric toothbrush, added to pulsating neuralgic headaches and stabbing stomach pains, my digestive system on go-slow, everything jammed-up and all my conveyor belts broken. Perhaps the most noticeable and affecting symptom of all is that I have tipped into orthostatic hypotension, so much so that I am registering as having POTs again whenever I test my responses to standing up. By the way, for me, orthostatic intolerance results in extremely low alteration of heart rate when I stand…often less than 10 bpm increase…rather than extremely high heart rate when I become upright as is more typical for POTs, as though my heart doesn’t have the energy to compensate for gravity at all; I intend to write about this less common version of dysautnomia soon…when I have the energy to do so. My heart rate variability is also extremely poor, indicating extreme fatigue and stress, even though I am allegedly “relaxing”. All of these things are indicators of chronic fatigue knocking on my door again!

So I went for my usual modest walk yesterday lunchtime, came back ravenous for a feast of highly salty food (I often, quite correctly, crave this and a lot more water when my blood pressure is low) and then tipped onto the sofa, straight into a deep afternoon slumber that left me groggy and discombobulated in a state of brain fog for the rest of the day. Last night, I tossed and turned when I should have been asleep and woke, this morning, feeling highly emotional, pricking tears at the slightest thing. I’ve been here before, I know all the signs and I know that I urgently need to tend to my sensory needs and preferences and, if anything, over-egg the ones that make me feel happiest and more calm as an autistic person, like some sort of urgent rescue mission to get myself back on the level. To do this, I really need to be mindful of what specific things bring me autistic joy and sensory pleasure…not run of the mill things but my very personal things and then aim to fill my days with them.

It was interesting, then, that in a recent episode of the Squarepeg podcast, which I happened to put on early this morning when I was tossing and turning, unable to get comfortable enough to sleep because the bed sheets and all the pressure points against my body hurt (I’m hypersensitive to clothes right now too), that this very topic should come up in the intro to an interview on the topic of finding “transcendence, reinvention and self-discovery” in later life autism, often coming after finally being diagnosed, perhaps after years of bamboozlement about why everything has always been so challenging (episode is linked below). As I have often written about myself, discovering you are autistic and then coming to understand your own particular challenges but also the things that have probably always helped or at least soothed you (childhood preferences and habits, such as the kind of things you naturally gravitated towards doing, or just simply enjoyed to give all your attention to, before life came along and had other ideas, can be a big clue to these). Paying attention to habits you still have, especially senses you enjoy playing with and how you tend to feed them…for instance, touching certain fabrics, gazing at birds in the garden, listening to certain music and so on…can help you to curate a sensory rescue kit, not only for everyday life but so you can draw these experiences to you whenever your nervous system is in desperate need of a reset, as mine is now.

So, right on this topic, host of the show Amy Richard talks about sensory stims that  may help us to self-regulate and find joy in our otherwise highly challenging autistic lives. She points out that these stims don’t have to be tactile and involve movement or fiddling around with things that we like to touch, as we probably tend to assume (I know I once did) but can, just as likely, be visual or auditory ones or, for instance, derive from the moment of pleasure we get from staring at something we just love to look at, perhaps a pet or a view, including when we look very concertedly at something we just created, gaining pleasure as we register the profound satisfaction of some creative or other accomplishment we have just achieved from our efforts. This last point really made me prick up my ears when she mentioned it because I can strongly relate to frequently using this kind of behaviour as a kind of stim myself and also as a way to self-regulate my emotions. I also think its one of the reasons I become so much less grounded and thus much more likely to become emotionally unbalanced when I am away from my favourite belongings, my hobbies and the familiar things I love to spend my time looking at or being surrounded by.

She describes how, in her own case, this behaviour is often accompanied by a sort of shiver of pleasure, as I can totally relate to a great deal plus it was also a frequent habit of our daughter when she was younger who would, for instance, on finishing something she had been doing, often clench her hands into fists and push them hard against each other until she sent a visible tremor through her entire body whilst making a satisfied guttural sound or a whoop; an endearing little mannerism that told us just how much she had enjoyed herself but not one that I ever put down to autism at the time. My version, to this day, is that I sometimes find myself clenching or pushing my hands hard together, into a locked finger prayer position, until I manage to send an involuntary tremor or tingle through my entire system, sometimes accompanied by a growl or other guttural sound, often at the point that I finally get to complete a piece of work to my absolute satisfaction. It’s something that I literally can’t help doing when I feel that thrilled with an outcome or in need of registering to myself that something has been completed, letting all that remaining tension out of my body (although I can only imagine how often I used to have to curb this impulse when I was in a shared working space). It’s just something I have always done and was so fascinating to hear it described as a kind of stimming.

Amy continues to describe how she will sometimes look at something she has created (a piece of writing or a website landing page) again and again, as a sort of visual stim, a bit like when you listen to the same song over and over again as an auditory stim. Again I can relate because, when I write something I am particularly pleased with, I might read it through multiple times in the same day, even after finishing it, in a way that may seem to the causal observer to be obsessive behaviour, in fact I may even go back to read it through again as soon as I wake up the next morning, not because I am checking for flaws (although I do sometimes find things I want to tweak) but because it does somehow stimulate me in a positive way and set my day up better. Another one that I am famous for in our household is that, when I finish a good day’s painting, I often prop up the artwork somewhere I can keep looking it and will spend half my evening staring at it like I am obsessed with it but, really, I am in sort of reverie of satisfaction that is hard to describe to anyone else because it is simply just something that gives me a lot of enjoyment and I don’t feel I need to justify it, or apologise for it, any more than that. Hearing another autistic person talk about this and the appreciation and enjoyment that can come from it was such a thrill for me.

I used to think these behaviours were born out of perfectionism and a need to keep checking my output so it was utterly fascinating to hear Amy mention her own similar habits in this department as it has allowed me to reframe the behaviour as yet another form of stimming; one that brings me deep enjoyment and which I really miss at less creative times of my life…a big reminder that I really need to get back to my painting and writing for pleasure so that I have this outlet in place once again. Another one I am currently enjoying is just fixedly staring at parts of the rooms I have designed in our new home, gaining such intense satisfaction from the interior schemes I have put together because I really have worked hard at making this into the house we have always dreamed of and it has largely come together to a point of completion now. Casting my eye over the way tones of wood and fabric successfully work together or the way artworks are juxtaposed with choice pieces of sculpture, ceramics and lamps etc can keep me more regulated, contented and entertained than any amount of watching TV in the evenings and, I now consider, is another way that I commonly stim as I have been doing this with interior spaces that I have had a hand in creating for as long as I can remember, right back to early childhood when I would fixate on some corner of my room I had arranged to look a certain way. As a mature adult, and at long last, I have now basically created an entire house of pleasurable visual stims that I can draw immense comfort, relaxation and enjoyment from and this represents the culmination of a whole lifetime’s ambition.

The thing is, I have been wanting to do more art for a very long time now but it has been sadly absent because the whole house-move thing has badly interrupted my painting practice; even though creating interior spaces has been its own form of art but, sadly, that too has largely run out of scope for now, leaving me in a void. Apart from painting three small canvases before Christmas when we were renting the small dark cottage (more as a distraction from living there than anything else) I haven’t had the chance to get stuck-into some actual painting or craft since way before we started to market our old house, for fear of making a mess when we had viewings and then, of course, packing up all my paints in order to move. I was just about ready to get back to it when the easter break interrupted it all and here I am, weeks later, not only still waiting to revive my hobbies but so burned out that I’m not even sure I can right now; catch-twenty two. My stamina is so low at the moment that art is, once again, on the back-burner but I really hope I can at least have a dabble before the end of the week as I really need it.

So to start with, while I am in this swoon of fatigue and sensory overwhelm, I just know that I need to fill my next few days with as many sensory stims from my personal pleasure menu as I can, starting with some very basic and perhaps rather unconventional ones but they work for me, which is all that matters. Autistic joy comes in some unusual packages but I think we all get to know what our personal ones are when we pay attention so it’s just a case of owning up to them and curating them into our days, even more when we particularly need them. Things like, when I am this hyper-sensitive, I like to wear hats, even indoors, the softer the better, so today I am sporting a soft cashmere beanie indoors, even though the room is perfectly warm and sunny. I don’t know exactly why this is except, to paraphrase the interviewee in the podcast, perhaps it feels like a lid. When I am experiencing neuralgic pain around my face and head, this is not only helpful but essential in order to keep my head warm (similar to how the only way I could get back to sleep at all last night was to swaddle my head, neck and upper back in a really soft blanket). I also often need to wear something warm…a soft scarf or high-neck super-soft jumper…around my neck and am known as scarf woman for the reason that I tend to wear them all year round. I now suspect that cervical instability thus increased vulnerability of the vagus nerve have a big part to play in this because, whenever my neck gets even slightly cold or exposed to a draught, I am much more prone to developing disautonomic after-effects that might quickly turn into POTs , neuralgia, headaches, stomach issues and more; I also become extremely fatigued and symptomatic when the weather is windy outside, as it is at the moment, even if I am largely indoors as it seems to unsettle and sap all my energy.

I also need to keep my feet warm at these unsettled times (and often have stone-cold feet when I am most disautonomic; in fact it can be an early sign that I am over my sensory or energetic limit), with thick soft socks on all day, even in bed, and this feels like it is for a very similar reason as the hat. Bare flesh can be highly overstimulating when I am at all knocked off my sensory rocker and this can make summer meltdowns, during hot weather, all the more challenging to navigate because of the need to swaddle myself regardless; so at least I can wrap up today without completely overheating!

Emotional “smoothing” is a big requirement right now so I have on my massive 70s music playlist today (I often default to music of my childhood era when I feel most disregulated as it soothes me more than most things). I might not quite have the resilience to dance but even a couple of minutes swaying or walking around rhythmically to music can provide some somatic comfort. Gentle visual stims such as watching the birds feeding and nesting in the garden, gazing pleasurably at the big sky framed by all the hedges and trees coming into leaf that we now have at the back of our house, since we aren’t completely overlooked by houses any more, or watching clouds float by as I lie on my yoga mat gazing out of the skylights for half an hour or so…these things can really calm my senses right down, doing repair work that I could never manage to do if I was to attempt to tackle them in a more cerebral fashion, because all I have to do here is let these pleasurable things happen for as long as needed. Again, its was so interesting to hear Amy Richards describe her similar habit of frequently using the view of her garden and the park outside her kitchen window for the same kind of visual stim, an oft-returned-to pleasure that keeps her emotionally regulated and which is part of a lifestyle she has consciously set out to make as soothing and enjoyable for her autistic sensibilities as possible with the aim, as she describes it, of focusing on the small joys that can be found in the day-to-day rather than doing something all year that drains you just so that you can afford to go on holiday for a week or two per year. Painting, by the way, was something I first began to do after my health crashed all those years ago because I liked the feeling of staring at whatever I was painting (usually something from nature) for a very long time, finding it soothing and self-regulating but, even without an artistic objective, I now realise I can rescue myself from sensory burnout by refocusing my attention on those kind of details just by looking at them.

On the previous point of making life itself so filled with small comforts and joys that you don’t need or want to escape from it, I can wholeheartedly concur as one of the main objectives of our relocation was to find somewhere we really wanted to be most of the time, so that we didn’t have to spend all our time masterminding how to get away from it on holidays or via the constant expensive, often disruptive, mini-breaks we used to go on. I really think we’ve succeeded, the only problem being that my desire to be anywhere else but home is now so very low that I really struggle to cope whenever we have to go somewhere else and find myself deeply resenting times when we are expected to stay-over or break up our routine of living here (this has already happened a few times and I can tell its not just to do with the honeymoon period of living in the new house; it reminds me of when I was a child and so strongly disliked to be away from home, unlike other kids who couldn’t seem to get enough of sleep-overs). This, I can clearly see, is a very autistic trait that I have…one that has always been there hovering but which has never been given such free expression before (childhood excepted) as adult life has never made it possible, or desirable, for me to stay put for very long.

I guess, this is one of the so-called “risks” of ceasing to mask and working so concertedly at allowing your autistic traits to blossom freely, giving them free rein over designing your life…being that it can start to seem to others as though you are becoming more and more set-in-your-autistic-ways as you age, something I am very conscious about in my own case as I can see myself firmly settling into my autistic groove now and at quite a rate of knots. The more I am prepared to speak out about the fact I would rather not do various things, such as stop over or vary-up my routines, the more I can sense people thinking I am turning into a real stick-in-the-mud but all I am really doing is finally honouring and standing up for my own personal preferences, most of which I have had all my life and which, in many cases, is long overdue!

I’m also conscious that I have now, to a very large extent withdrawn from many of the typical exposures and preoccupations of the rest of the world, filling my days with my own chosen zones of interest and personally curated stimulation sources. The trip-wire of this comes when the outside world forces its way back in, as has been another source of overwhelment these last couple of weeks because I have had to hear all about the various ways my daughter continues to find her life highly triggering and difficult to navigate as a non-declared neurodivergent individual in an academic setting that is clearly not designed to meet her needs and preferences whilst living in, and moving around, the kind of highly overstimulating places people in their 20s are often forced to spend their time in, shoulder-to-shoulder with some very highly triggering people and situations. Just hearing about some of her recent situations and stressors, not to mention feeling them as the highly empathic parent that I am has been highly distressing for me (I have long struggled to imagine that any mother could be unempathic towards their flesh-and-blood offspring but have since had to accept that I likely feel, empathically, more of what my daughter has going on than some less highly-sensitive people, especially because of our similar neurlogy). I find it impossible to remain objective and impassive,  just simply “offering a listening ear without injecting opinions” as so many advice sources recommend for when dealing with adult children who are meant to be, by now, navigating their own lives. This factor alone, and perhaps above all, has been one of the hardest for me to ride-out this time around as I also find it highly triggering to all of my own considerable post-traumatic wounds, derived from my own young adulthood experiences which, to a large extent, left me emotionally damaged and in a lot of distress about who and what I was for a lot of decades. Even though I have the beauty of hindsight, now that I finally realise about my autism and the part it played in my experiences, those wounds are still like hotbeds of trigger-factor for me and it is therefore extremely difficult not to engage my own nervous system when someone I care about so deeply, and am constantly worried about, tells me all the ways they are living through similar experiences to those I experienced for myself all those years ago.

 This could easily spin off into its own topic: being, how does an autistic parent do the very best for their autistic offspring without having to wind back their own nervous system to the point it is likely to re-experience some of the original trauma, and harder lessons, they went through themselves at the hands of a world that has somewhat evolved in the interim…but not all that very much really. We all know that we have to let our kids get on and learn things through direct experience and by making their own mistakes as its the only way they will ever build resilience and independence, but I think it can be doubly hard not to get involved or try to protect a neurodivergent offspring from being put through the same mincing machine that we only narrowly escaped from with our lives.  At the very least, I think it’s impossible not to get emotionally involved when we hear what they are dealing with, even as we strive not to get physically involved as much, including all the injustice they are being subjected to by the neurotypical tilt on everything, and this sense of having to live through it all again can be a considerable source of overwhelm and burnout for the autistic parent; at least, in my experience….added to the ever-more apparent knowledge that, in reality (and in spite of any naive expectations we may have had before we got pregnant), the role of parenting never ever ends.

So here I am, in burnout week but at least I am remembering to engage with some of the gentler, more pleasant stims in my arsenal, even if that simply looks like wearing soft clothes, staring at birds and curling up with a vintage film every afternoon for the foreseeable future. If it takes me a week or two to reboot then that’s what I need to give to myself; that much I have learned, the hard way, in the past because my body simply won’t accept any shortcuts or, indeed, short rations. Writing this post is a sort of memo to myself, for now and for the future, so that I don’t keep forgetting what I need to do and how concertedly and unapologetically I need to do it when these episodes arise and if it also helps to prompt someone else to take good sensory care of themselves then that is yet another bonus. Giving yourself permission to do these small helpful things is just so important to living your best autistic life that, although I know I have mentioned some of these tactics before (probably many times by now), I just don’t think this can be said too often and so I’ve gone and done it again.