We all know how the behaviours and circumstances of parents and grandparents continue to affect our health and well-being, right? I knew, yet I’d still underestimated. It wasn’t until a webinar on using somatic healing approaches to address mast cell issues by making far softer movement transitions in the body so as not to over excite the nervous system fed some new thoughts into my mind, one being the need to stay far more present with my body and how it’s reacting to every…slightest…transition, that I began to join some dots.

The next morning I noticed how tension clamps onto my body the very first moment I move to go to the bathroom after waking and then how I automatically tend to think “well I’m awake now, may as well do something constructive” and before I know it I’m listening to a podcast on some meaty topic or overthinking or writing notes. Another example, ever since we decided to move house, I consider every waking moment wasted if I’m not taking constructive steps towards that move; I’ve been typically driven and fixated ever since!

Seeing a 28-week premature baby last night in the program I follow threw a ‘“random” curveball realisation into my head; when my daughter was that-far developed in my womb, I set off (not on some straightforward final holiday on a beach before becoming a parent but) on a convoluted road trip to Derbyshire, the Lake District, Edinburgh and the Scottish highlands with the large rumbustious young dog I was mostly responsible for jammed in the boot of the car and with swollen ankles to boot (in both senses of the phrase). I was up every morning walking that dog…even walked him all the way to Ambleside from our remote b&b because my then-husband was always in bed until midday and when I wasn’t doing that I climbed the hill where we were staying before breakfast before doing whatever we did in the afternoons. When we were meant to be settled for the final week of kicking-back in the highlands, we moved house all over again because the first place we stayed didn’t feel right. One day, I walked all around a sea loch as far as you could get and back again in an afternoon because, well, when would I get the chance again.

Another month into that pregnancy and I painted all the exterior windows of our house, up a ladder, and mowed the lawn weekly because getting the house “right” before the birth was my mission. I have no doubt my mother would have been that driven during my gestation as she always was; after all, she was the woman who would get out a bucket and mop the kitchen floor at midnight every Christmas Eve when we were all in bed. Perhaps she beat that drum at me so hard and loud I caught the rhythm before I was even born.

Because I have always pushed myself, more subtly these days (or perhaps I hide this pushiness away or dress it up, like any experienced addict) but its certainly still there because every coercion beyond a threshold I’m not capable of passing, because of my particular body foibles, is really a shove…whichever way I prefer to look at it. I wonder, how much does this attitude leak into healing protocols, resulting in me going into them fast and hard, no nonsense, instead of listening to the body and titrating the levels of supplements or whatever to see how my body responds first? Its only fairly recently that I’ve even started to consider that my body (owing to autism and high sensitivity) has to go in slower….much slower and more cautiously…than the average body.

Every morning I gird my loins for another day and I dive straight in. When do I ever allow the soft feeling to perpetuate when I first wake up, even if I knew how…can I remind myself? Do I even know how to activate enough muscle to stand up without raising a full alarm bell of “OMG she’s awake?” Oh it’s very subtle but its there, that sergeant major’s voice bellowing to me to get going (which is interesting for a reason that will become apparent shortly). Even if I instigate some new gentle habit, like lying down yoga or expressive dance in the mornings, the voice is more like “come on let’s get on with it, at least 20mins on the mat” without even checking in how I’m feeling or being prepared to adapt. In fact, I’m afraid of adapting too much incase I lose my good habits and slip backwards so even when I take time off, my mind is focused on when I will start again.

Through somatic eyes, you start to realise, every mindset, every fixation upon what you are going to do at some point ahead, is a motion of sorts…putting you, already, into the tension of activity, even before you have begun to stand up. The body knows that, it acts on it and it takes short cuts so, if you are always onto the next activity in your mind, why would it see the point in relaxing given it so-soon has to get going again; especially if transitions are not its forte? Far easier to stay poised for action at all times…leading to chronic tension in the body, even when you sleep.

I never once considered, till I heard the idea the other day in a podcast…I have an ableist voice in my head that I really need to shut down!

It’s one thing to have people around you expecting more of you than you can handle, comparing you unfavourably with more able people or discriminating when you can’t do something, but for that voice to be internalised is especially vicious and mine is in there…not in critical words so much so much as in attitude and expectations. Every time I expect myself to do something beyond my capabilities as a middle-aged autistic woman with hypermobility issues and chronic illness, that “voice” is having its say, comparing me with someone more able or some scenario in my head imagining myself doing that thing regardless of my limits, which is to not accept me as I actually am. It’s a denial, a negation, an unspoken criticism that says if I don’t do this thing, I am pathetic, a failure, a waste of breath and I have to try harder until I get there. Expecting myself to ultimately recover from all my health issues (I might improve in my chronic conditions but I can’t “recover” from autism or EDS) is to be ableist towards myself in my mindset. Wow!

Mum was just the same; she never owned up to illness or tiredness, shrugging it off. But then she actually had a sergeant major for a father; quite the indomitable and fear-inducing character I’ve heard as I don’t really remember. I can’t imagine, from what I have heard, that he ever suffered any of his kids being “different” to societal expectations of the most dutiful, respectful, uncomplaining, well-turned out young people, cut to an entirely neurotypical cloth. Likewise, when mum bawled us out of bed in the mornings, there was no gentle transition; one minute deep in slumber, the next you would be shivering minus a duvet and that voice shouting-talking over you or yelling up the stairs every five minutes, always straight off at the starting pistol with the kind of stuff the brain was too befuddled to take in so early but she would talk at you anyway. When I was so terrified of secondary school I was being sick in the mornings, she gave me a shot of brandy (some bizarre regimental antidote?) and sent me on my way.

I wasn’t fearful of her as such but I was braced for her a lot as she was always direct to the point of abruptness and had no half measures. In fact she knew no subtlety until I remonstrated with her about her manner, years later, when I finally dared to answer back, but it was as though she couldn’t help herself really… directness was the only way she knew how. It was as though she had internalised the voice of her father. I wonder how much she also harboured an ableist voice, one that suffered no deviance from the path of high expectations set by a no-nonsense parent to her and how much that pushed her through symptoms she would have done better to notice sooner (she died of cancer, diagnosed very late).

I find I want to use the phrase that I am “revisiting the sins of the fathers” (and mothers), bizarre as that sounds. It’s interesting that, at its core, “sin” means an action that alienates us from our own unique design by going against ourselves, our own wellbeing, our healthiest expression, as we so often do, quite unconsciously, when we take on other people’s behaviours and expectations as if they are our own. Our “sins” are so often hand-me-downs that remain quite unconscious until we spotlight them, which is why I want the buck to stop with me. Getting conscious is the very key to breaking the train of faulty behaviours and healing.

It was that familiarly unsubtle wake-up call of youth that flooded back to me this morning when my husband’s gentlest stirrings woke me up and suddenly, as ever, the pain gripped back around my system like an iron fist, though there is always the half asleep moment when it’s not there yet. I might as well be still waking to the bellow, for all the good his attempts at getting up so quietly do for my body once my nervous system stirs but that brief moment of comfort always gives me hope that it still knows how.

I’m terrible at transitions, it’s one of my autistic things; I require extra time to adjust. But then mum didn’t know about my autism…no more so did she know about her own, though it’s obvious to me in hindsight and never was there a more black and white thinker. Another thought I had last night, about the preemie baby (in awe of just how tiny it was…when was the last time I saw one televised); that’s just how small and vulnerable mum was when she was born, “no bigger than a bag of sugar” because she also came about 9 weeks early and at a time when there was no special care. How she survived we will never know but if my great-grandma hadn’t picked her up and made a thing of keeping her going when all focus was on my grandma I am sure she wouldn’t have done. Whenever mum had a health foible, all her life, she would always shrug it off with “that’s because I was premature” and she would tell the story again.

It never occurred to me until last night to ask, is prematurity associated with autism? Yes, it turns out it is a significant epigenetic component, as is having older parents; if the genetics are there, it can make it much more likely. How much more environmental stress must there be for the baby, I kept thinking last night, when it is dragged out of the womb into the brightness of the world at such an early stage? Before the skin is ready to receive so many sensory signals? Being way too fragile to hold? That has to have an effect on the unfolding of potential autism.

I was the child of much older parents, one of whom was a premature baby.

These epigenetic components, mere accidents of circumstance, are a part of the picture of our present day health…all of them…whether one-off circumstances (such as, unlike me, mum grew up in wartime and had no fixed home in childhood) or perpetuated behaviours played out as “styles of parenting”, for want of a better description. Combing them out of the picture of present day health is impossible but at least recognising them is an opening; a chance to unpick ingrained habits, such as that internalised propensity to push so hard that I note inside myself. Once I see it, I see it everywhere, even in the urge to write this post as I lie here in bed!!

Like any addict, I always tell myself “just this once…” when I spot the behaviour but I never turn over that new leaf. And I allow myself to get distracted because everything feels that important and I can’t easily prioritise, so I tell myself I want to push through it all, trying to run multiple threads of priority all at the time, meaning my mind is never still, my body reduced to being its faithful lackey. I should really know much better since doing the Gupta program (where I did a lot of work with these dominant personalities in my head) but here it still is…more to be done (and how not to turn this “more” into my next mission to crush some target). I can’t seem to help myself…except, when I make “being present” with my body, in this moment, my only mission…at which point I catch glimpses of the ingrained behaviours and that process of observing is the very first step.

To see the habit is to have a handle on it, to start to spot it at every turn and notice patterns, even in its subtlest forms. I learn to stay more present with how my body really feels right now…so it doesn’t have to shout at me or resort to more drastic methods of gaining my attention before I respond

A giant leap is newly seeing any action at all as “movement”…could be as small as the tight grip of a pen, twisting the body as I turn over onto my hip, slouching in my chair, perpetuating the uncomfortable activity for one extra minute, giving my attention to the person, entering a room where the atmosphere is different, even the way that I do that…am I rushing into a situation to get it over with or am I taking my time to feel into the changed circumstance and make any adjustments? Do I speak too fast, too loud, too abruptly, putting myself through extra strain, in order to make myself heard or meet people’s expectations?

When I take those motions much much more slowly, when I pay attention to every response in my body, I make breakthroughs galore and things already start to soften in my system from the downgraded pace, no need to hurry to stay afloat in the world. Do I have more choice than I generally allow myself: To say “not right now” when somebody else wants to talk or be in my space? To claim some entitlements based on my autistm rather than pushing through because, according to learned neurotypical expectations, “its the right thing to do” to be constantly available or sociable or collaboratory? To claim a non-verbal day on days like today when I have plenty to say in writing but I really, really, don’t want to talk (I often prefer to write when I am feeling non-verbal; in fact it gives me the perfect excuse to go quiet!) and when it feels cathartic to go inwards for a few hours…yet I worry so that I will hurt my husband’s feelings so I usually force myself to push through my resistance?

How have years of masking and acquiescing forced my body into a chronic state of agreeing to terms that don’t always fit with my preferences, abilities or sensitivities, such as when I just want to be left alone, go quiet or do things my own way? Can I quiet the ableist voice in my head that insists I have to conform, in order to allow myself to be fully me, at last?

With perfect timing, it just happened…I feel deeply non-verbal today as I said, but the doorbell just went and it was the painter and decorator come to look at our house so I had to take him on a tour and discuss what we need. Afterwards, I have a pounding headache, I can’t even describe how much my body feels rattled…that, even though I made myself curb my natural instinct to dash to the door and slow right down when I opened it and spoke to him. I took it as easy as I could but because my autistic body didn’t want to communicate verbally today its been pushed over the limits and I had no way of knowing this when I booked the appointment as every day brings a different landscape in my body.

It makes me realise something else tied up to my autism. The core problem of my chronic health conundrum could be as simple as the fact of chronically making myself do what I really don’t want to be doing (one of the massive pitfalls of being autistic in a non-autistic world). So much so that I hardly even notice any more and have lost track of what I really do want to do, what that even looks or feels like on the average day or how to give it expression. Maybe my entire system is crying out for that now and won’t settle for anything less.

There’s a “condition” called pathological demand avoidance associated to autism which long-ago pricked up my ears as I relate to the idea of it. I’ve heard say that pathological demand avoidance is only “pathological” when regarded through neuotypical eyes. To the person avoiding, their avoidance is as logical to them as an NTs avoidances are logical to their particular neurotype; a matter of different perspective, not pathology and who’s to say who is right or wrong. Could chronic illness be a form of pathological demand avoidance played out in the body over decades of doing what doesn’t come naturally? A body that is in such historic resistance to unnatural demands being made of it (according to its neurotype) that it gets locked up in trauma and grinds to a halt?

The only way to unpick this is to start to listen…really listen, and notice and change the behaviours, piece by piece, when they don’t feel right. To allow softness and slowness, prolonged rest or pause and that ability to just stop altogether or turn around when going forwards or continuing doesn’t feel right to the body. To listen closely and respond differently from now on.

I’m all ears.