Autism and feeling too much (not too little)

Like with empathy…about which it’s commonly said that autistic people are lacking whereas it’s now much more widely accepted, especially amongst adult autistic women, that we often have way too much empathy to handle….I believe some of us have too much somatic experience going on to easily handle.

By this I mean that I’ve read, so many times, that we lack body awareness or the ability to pay attention to our sensations but I know that’s very far from the case for me (and many others I’ve heard share their experiences), in fact the polar opposite can be true. As I prepare to attend my first therapy session in years and my very first since realising my autism, anticipating that I will be required to put into words sensations I have in my body, in order to get the most out of those sessions, my problem as ever is finding the right words to convey anything approximating meaningful information to another person who doesn’t share them. It’s the perpetual difficulty of trying to reduce the kind of experience that is all encompassing and beyond the easily relatable into descriptors that are wayyy too small, too specific and limited to translate anything approaching the unfathomable reality that is going on inside my body.

This all-encompassing factor is why additional sensory experiences, even those that seem trivial, extremely mild or quite imperceptible to other people, can often be too much to cope with, think proverbial straw on camel’s back.

I recently took delivery of a pair of smoveys as recommended by Peter Levine himself for facilitating somatic work. I was really excited for them to arrive but, even before they came out of the packaging, they felt much “too much”. The sound and feeling (yes I feel them inside of me, without even touching them) of sizeable metal ball bearings rolling around inside curved and corrugated plastic tubing sends my nervous system wild as soon as I am anywhere near them, even when my husband swings them about in another room…first response, I don’t know why I thought this would be a good idea for me. Just recollecting the sound they make and the feeling in my hand as I write this days after I last handled them has me shuddering, my teeth on edge, jaw clamped tight and then the sensation runs on reverb in my nervous system for ages afterwards. So, do I push on with my tutorial videos? I really don’t know, getting the sense this could either make or break me…and a bit late if I get it wrong. What my instincts tell me is that any use of these has to be extremely slow and cautious; they remind me that my neurotype expression night have a group heading “autistic” yet it makes me the same as no one else…as the old saying goes, if you have met one autistic person you have only met one autistic person (not all of us).

It takes much more than a calming thought or a supplement to talk me down from an edge like that. Precipitous feelings in the body are my norm; like I’m always about to tumble over some very narrow ledge into an excess of something abhorrent to my sensory sensitivities in a world that is highly overstimulating at every turn.

So how do I share this even approximately with a therapist seeking labels when it’s all too broad, too all encompassing and multifaceted to convey. I suspect this is partly why my brain employs synaesthesia as a help-aid to fill in gaps where shortfalls of language exist galore. It helps me, internally, to identify groupings of sensations using much more than words or concepts. Yet my version of synaesthesia can’t be readily conveyed to other people who aren’t party to my unique expression of it which, though thousands of individuals have it, is always quite unique, a sort of personalised multi-sensory language modality, specific to that person. I can offer approximate labels as translations of sensory experiences I have…”it feels sharp, like exaggeratedly long acupuncture needles pushed deep into organs and it’s the colour grey green like a bruise, tastes like tarnished metal in my chest with a sense of musty syrup saturating every nerve fibre while my legs suddenly feel rigid like they’re being filled with quick setting cement” but that doesn’t get even close and misses out so much of the actual experience and how very much of the body, usually the whole of the body, is involved in one single response. It’s fully immersive, non-linear, multi-sensory in ways that cannot be adequately conveyed. I can recall trying to vocalise some of these sensory experiences to my parents as a child…discouraged by their responses, I soon gave up.

I also suspect synaesthesia is a sign of this whole body response, as in, there is no strict localisation of experience for me; there are no boundaries, no hemispheres, no containment of sensations and awarenesses…they spill out like oil from a leaky canister, getting thickly and stickily into everything in my field of sensation which, by the way, extends several feet from my body. I can easily feel as wide as a room and everyone in it.

So, there are so many areas of human experience where autism is assumed to mean less than or shortfall whereas it’s often a case of more…so much more that it’s untenable and excruciating to be in the experience of it. Sometimes, the very appearance of shortfall should prompt the question “is way too much going on in there, so much so that it can’t be handled or made sense of, can’t be articulated or processed in conventional ways?”. It also distracts, holding the individual with it enthralled, in either horror or fascination, by their own all-enveloping experience of life such as there’s barely any room left for anything else. What seems like nothing much going on can be an experience as intense as a universe encased in a body, bashing against its boundaries as though it refuses to be held in, against which the rather facile preoccupations and demands of the typical world don’t stand a chance.

As is the case with the lack of empathy thing, such an old stereotype of autism, it’s now so commonly reported that autistic people not only experience empathy but that it can be on a whole other level; such an unbearable level, at times, that we feel all the pain and distress of our fellow human beings just from proximity with them. Imagine that…and then imagine trying to process that tidal wave of sensations into an “acceptable” behaviour or response. I put it to anyone, regardless of neurotype, they too would stumble or shut off in such a circumstance yet we live with it day after day and have no choice but to try and deal without offending through our non-typical behaviours. All whist being unfairly assumed not to be aware of or care about others’ distress when we are really dealing with so much of it we’re rendered overwhelmed and broken by it or we just can’t take it on and survive the intensity.

That intensely “felt” response to other people’s mental, emotional or even physical states (basically, mirror touch synaesthesia as I have talked about since long before I was fully aware of my own autism) also feels deeply somatic in nature. It’s not that we rationalise an empathetic response (rationalisation of what we empath is the very last bit to come and is not our strong suit, largely because it’s governed by so many social rules of how we “ought” to respond that make no sense to us and which are not likely to occur to us in the moment when we are feeling overwhelmed). We feel the other person’s grief or fear or excitement as though it were our own, overlapping with sensations from anyone else in the room plus our own felt sensations and the interactive patterns between all of these people, which we also detect…whilst trying to make sense of all that at once, in the moment, which is such an unbelievable lot to contend with, just so energy draining too. For me, being around people with strong emotions is profoundly challenging whether those emotions are high or low, it’s why I do well married to a fairly steady person; but on the odd day he has a meltdown, big or small, oh how I struggle as though my one reliable factor has gone awry. I can’t protect myself adequately from riding those emotions, whatever they are, and even high spirits use up spoons or jitter a system that is is taking all my might to hold steady. Menopause, by the way (see my recent post on this), has made this effect so much worse and more likely; I cope markedly less well around people than I did before reaching this life stage.

However, whatever they say about us, this is true empathy, not just “sympathising” cognitively. It still doesn’t automatically mean we can relate or cognitise a solution to the other person’s situation, especially as we now we feel overwhelmed by it too (only, more so because it’s a second-hand sensation to us, one we have absolutely no control over) and it’s on top of all our own sensations yet what we feel is true empathy, without all the social trappings. Yet another reason we sometimes melt down or prefer to be alone.

Times like this are, so ironically, when I most closely conform to the stereotype of an autistic person, showing no emotion, apparently not caring, being withdrawn or distancing myself just when a person needs me. What people seldom appreciate is how much is going on inside or how tortured and conflicted I am, yet how I have to do this withdrawal thing for my own survival; also, how much I really care and am probably overthinking their issues day and night, wretched with a sense of my own ineptitude and a fervent wish to make things better yet not having the means to take on any more of their stuff.

Which is as it is on days when I feel too much in my body; because it has to be that way while I collect myself. On those days, words don’t help, they only isolate bits and pieces of the issue, inevitably to fixate on parts of an unsolvable problem, because everything about the experience is really much bigger than that, bigger than me. Fixation can distract for a time, but it doesn’t move mountains. You can’t solve a problem from within the paradigm that gave rise to it…and my neurotype is the paradigm.

In that moment, the problem is a stimulus, or several stimuli, that I have to gain respite from. Not push through, not rationalise, not practice aversion therapy on, not work out like it’s an undertoned muscle (faulty premise as it’s really an over toned ability to feel) but step away from it to the best of my ability. Sometimes, not always (such as when absolute silence or nature sounds are needed more) music can really help facilitate my body’s ability to release the sensations, or even movement to music as some sort of communication and expenditure of pent-up energy without need for any words. Sometimes, ironically, to write is the answer because this uses words that go direct to the source of me; no masking, no overthinking, no translating to convey to others but just unfiltered expression as it comes. I do, or don’t do, what it takes in that moment to get through.

At that point my body truly knows I’m listening to its sensations, no explanations necessary. What I seek from outside I offer within, which is the facility to be heard or simply met just as I am. It’s the best I can offer it; to stay present with myself through thick and thin, to do my best to encompass all the sensations without resorting to a fear-mindset which would make my whole life untenable since there would be no getting away from it. To make it more bearable is my only mission and should, in my opinion, be the main focus of all autistic support systems instead of some highly presumptive attempt to alter, normalise or fix.The sea of life’s expectations has to part to make way for me on those days, so I can walk on through my own way. I simply can’t be made to do what I am not capable of doing or exposing myself to on such days and realising this has been one of the graces of maturing into my own understanding of autism at last, standing by it and advocating for it, come what may.

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