A lifetime fuelled by pain and frustration: handling the emotional fallout of long-term undiagnosed autism

Diagnosing as autistic is a very mixed bag and can go off in various directions for different people; some positively transformed by it, others so destroyed by the late knowledge they fall into even darker places. Or, most likely, your response may swing back and forth for a while, perhaps for years, until the pendulum loses momentum (if it ever does) and you hopefully land in a better place.

For me, it’s been that very mixed bag this year, if mostly positive…the least positive bit being how to attend to all the emotions stockpiled across all the years of living life in the darkness, as though blindfolded and sent out into the mosh pit of life without some very key parts of the toolkit that other people had, which was what pre diagnosis was like for me. I can’t help noticing how these harboured emotions (when I catch a glimpse of them; because they are furtive characters) feel so closely associated with my ongoing chronic health issues. If only there could be some resolution for all those decades of pent up feelings, from being unwittingly autistic…a lifetime spent bewildered and accident prone, inevitably left to draw some pretty devastating, if wrong, conclusions about myself…then maybe my health issues would resolve or at least settle down.

This makes me I wonder if blocked-up emotion channels are a very big factor when it comes to the crossover of autism and chronic illness including (or, especially) chronic pain. I’ve certainly heard a fair bit of talk of a potential link between emotions and joint pain in autistic people and I know for a fact that when I am feeling most autistically challenged I hold an incredible amount of tension in the body. In this space, I’ve talked before about the autism link with headaches, hypermobility, gut issues, PMS and now its time to consider an emotional factor as a root cause; not a hard assumption to make given (as I know from my own experience) the stockpile of emotions from the pre-diagnosis life can be considerable; presumably all the bigger the older you are when you get diagnosed, and all of those emotions stored-up in the cells of the body. I just heard one very sad story in a podcast today of a woman in her early 60s who, instead of feeling relieved on finally getting diagnosed, took her own life; though I am very far from that, even after 5 decades of struggling in the dark, it’s not altogether hard to believe. Reading this post through, I notice how many times the word “thwarted” came into my mind.

On the surface of things, I really don’t seem like the emotional type. For as long as I can recall, I’ve kept myself upright and moving forwards by using habitual behaviours and routines, right back to some of the OCD rituals I used to perform before going to school to “keep me safe” from bullies. In truth, I’ve never really stopped doing that…as in, containing all my emotions within an increasingly stitched-up routine of tightly held habits and interests that keep me feeling emotionally together.

So when it comes to emotions, especially my own anger, I have to admit I have a major blind spot.

At certain times when pain or blood pressure are high, I do realise that I am angry, I’m irritated, I’m gnashing at the bit but I don’t generally see it straight off…and, when I do, I tend to attribute it to the pain itself. However, what if it isn’t the pain that causes anger and frustration; rather, what if pain is the OUTLET of anger and frustration as-in all that unprocessed emotion collected over decades having turned into my chronic issues, reaching a sudden crescendo, wanting to get out!

Which is what felt apparent last night after an appointment with my homeopath. I knew we were due to tackle emotions in this second appointment so I typed up a timeline of my life the day before, thinking it would be a largely perfunctory task. Instead, I noticed just how tanked my mood was by the end (I felt hot, I felt bothered) as I scanned this long list of lifetime hurts and traumas and realised, in black and white, “wow, that’s such a lot!” Punctuated by milestones of pain, my life looked like an index from a trauma manual, so thoroughly have I covered just so many sources of emotional pain in my life…in fact, it sounded “exaggerated” but I knew it was true and at least, because my homeopath is also autistic, I knew this time the person opposite me would believe me if I talked about it. I was also aware that this was the first time I was going into an appointment intending to talk about it all because, though these issues have come up before, it’s usually been unplanned and come out in bits and pieces, and I’ve not always felt fully understood or even handled appropriately. Back in the day of more hands-on therapies, I would often spew so much to them verbally that the session would sometimes go off in a different direction (“you obviously needed a chat more than a massage today”) yet these people weren’t autistic, weren’t trained in trauma and should possibly have passed me on to someone who was!

Perhaps that’s why, this time around (unlike before with so many other therapists) I got it all down in advance, no rock awkwardly stepped around. The thing is, the appointment was only half an hour long and the point of it wasn’t to go into any of this in detail. I knew, already, that though homeopathy may be helpful for some of my symptoms its not what I am ultimately seeking and what I still really need, am still searching for in vain, is a talking therapist that is also autistic and who feels like a “click” with me, someone I can entirely trust and open up to, so I can unpack some of this stuff without filters or explanations or masking…which is to say, to get it off my chest in a way I have never managed to do before. I need someone trained in hearing people out (not looking for solutions, just an unconditional hearing) who is also neurodiverse themselves because, no offence meant, nobody that isn’t can ever truly understand what its like on the inside. I need so desperately to be “held” in a safe and neutral space, to be properly heard and I need this so badly now that this need, itself, is now driving my frustration, yet I’ve scoured pages and pages of therapy services and, as yet, not found my person (I will know when I do).

I realise there’s all these years of frustration built up in me from feeling like I stand at the sidelines of life, invisibly handicapped and like a lamb to the slaughter in situations where my own gullibility and black and white thinking laid me wide open to abuse in ways that didn’t even occur to me because I was using my own psyche as a benchmark to evaluate what others were capable of. If I couldn’t imagine exploiting another’s vulnerability then why would they do that to me (I naively thought, time and time again). And I explicitly trusted some profoundly untrustworthy people, almost like I believed I was collaborating with them in the matter of my own well-being (because I thought that was the definition of friendship), giving them the backstory or the view under the hood of my own processing that they later (or not so later..) turned around and blasted me with.

All of this because I like to share with people, and I also tend to assume we’re all equally as fascinated with learning about human nature, via our collective struggles though life together, as I am; not “getting” that my nature and motivations and theirs were probably so fundamentally at odds that I was miles-off guessing their real objectives in being with me. I have years and years of not realising (or of coming to realise gradually, one communication breakdown after another) that what I was feeling was not what other people were feeling or even aware of; and that’s a bitter pill to swallow all in one go at the point of diagnosis. There I was biting back my pain and discomfort for all those years because I assumed everyone else was just getting on with theirs in such a stoic way when, most of the time, they simply weren’t processing so much or so minutely as I was, they weren’t hyper-stimulated by ordinary things or overthinking so much and having to plan every manoeuvre. You can spend years thinking you are on the same page, only to realise you weren’t even in the same book.

Realising this also leaves you feeling unspeakably lonely, as though you are left alone standing on a planet of one, regardless of all the crowds that seem to swarm everywhere. Diagnosis may put you in touch with some wonderful resources, places you can read or hear other autistic people share spookily similar experiences but it doesn’t suddenly grant you a confidant…it just makes you realise how very far away you always were from the sort of intimate friendship you were looking for most of the time and with all of your energy, which can make you feel unspeakably sad and thwarted.

Over and again, the person I invested so thoroughly in wasn’t seeing the same big picture as I was, where I simultaneously weave threads from the macro to the micro and everything in between, which takes ducking and diving through such a vast sea of ideas you can lose some of the ability to make small-talk or adhere to social conventions but you hope they see through all that…to see you, as you are. I longed for people to get excited about life with me and, multiple times over, thought I had found such a person I could be truly myself with. Instead, and quite ironically (given I’m meant to be the over-literal one) they were usually taking me far too literally and regarding my a-typical interests and communication methods through eyes that only judged me as weird, amusing, an oddity, as too forthright, self-obsessed and as fatally flawed as nearly all of my friendships have turned out to be in the end. Meanwhile, I would blithely assume they knew me (or wanted to know me) in all my complexity and depth, the same way as I longed to know them, and were treating me as gently as my most sensitive parts required but it often didn’t turn out to be so; realised far too late.

Thus I repeatedly walked straight into situations where I was abused for others’ entertainment or power-kicks and had none of the theory of mind to defend myself (not because I’m deficit but because I had higher expectations of people than most are apparently capable of and literally couldn’t believe anyone could be so cruel or careless as they were often being). In short, I assumed others were just like me; a fundamental mistake when you’re wired completely differently – if only I had known, five decades earlier, I could have been on my guard and known my own limitations.

And then I never realised I wasn’t part of the game; the one in which everyone else seems to have been issued the rules at birth, only mine were never handed out because of my alternate neurotype. That they were all in the know and me not was the invisible handicap of several frustrating decades; all I kept feeling was the invisible glass ceiling when I kept hitting my head on it, or the locked turnstile when it came for me to join in where all the others gathered beyond some invisible boundary. How do allistic people “just know” when they are in the presence of an autistic person? Yet, I’ve heard, countless times, that they just do, as though they sense it or pick up on all our subtle differences, mannerisms and stims, even when we and our families and teachers don’t. Why have I found it so hard to be accepted at face value in any context, from school to career to friendships; it’s all there, in my autism but this doesn’t take the pain away. I’m frustrated at looking back to see just how many well intentioned aspirations were utterly futile from the start, had I but known about my differences; in which case I could have save all the effort and put my attentions and energy elsewhere, maybe got somewhere that I wanted to be. Then it dismays me to notice how any thwarted attempts at anything, big or small, now exhaust or frustrate me exaggeratedly, like its the end of the world or knocks all my stuffing out, because I’ve just been there too many times for one person in just one lifetime.

I’m also weary to my boot straps of the endless need to mask to get by; saddened that its still so very hard to get by at all if I chose not to do this anymore, stomach-punched by the knowledge that if I am truly myself unmasked I can, at best, hope to get by with the minutest handful of people in my life. That is, my safe people; people who accept me just as I am, no expectations that I change. There have been decades of inappropriate touch (so much of it making demands of me that were tantamount to torture, frequently against my will) yet pitifully little of the kind of “touch” I long for, being the touchdown of the heart and mind, leaving me feeling desolate and lonely, which is nothing to do with the fact I actually like to be alone. We all need connection with others, even when that expresses in an introverted way but there seem to be very few options for me to make meaningful contacts when wired as I am. Certainly not without all the self-sacrifices; the assumption that I am the one who has to change my ways, to concede to the so called norm. I also hate how sensory challenges continue to isolate me and how those are mostly misconstrued by other people because they simply can’t relate. Even if I try with all my might to mingle, there are always so many stumbling blocks to joining in for me and it makes it feel too overwhelming or like an aspiration too far this late in my life, given all my other issues.

So though none of this happened to me yesterday. I realise it has built up in me…is held in storage, deep in my body. In usual resourceful fashion, I have even found a use for it, because when my requirement to self-stimulate comes over me, when my neurology suddenly flatlines as it is won’t to do because my brain chemistry is suddenly depleted of the necessary juice to scrape me off the intellectual floor or when I’m so deeply fatigued I almost can’t breathe, which seems to happen more and more since menopause, then if this annoyance-thing can be roused in me I can use it as a fire starter to warm me up and get my pulse going again. If I can keep myself alive with it, when all other sources of fuel are utterly depleted, like burning old sticks of furniture to keep warm, then my desperate body frequently chooses to do so; more and more. In fact, it never seems to run out of this fuel-source from the bottomless pit of stifled rage and frustration and hurt; meaning there must be just so much of it, though none of it apparent at the surface, where I don’t seem like an angry person at all. Now 18 years into chronic illness, and the stash is still fuelling my fires with bursts of intense pain and heat and unreasonable discomfort that alternate, randomly, with other times when I am as calm and as unbothered as can be, with no real rhyme or reason for any of these swings and shifts. Most of the time I don’t even know that I’m angry or irritated or feeling some old remnant of frustration or hurt like it’s fresh in the moment. All I get is the sudden jet of heat, the burning skin, the rash, the intense pain like all my nerves are on fire, my body a bonfire; all of this, and more, caught on repeat.

Which is what came up for me last night, shortly after my pitifully short session with the homeopath, which was just long enough to open the door on a painfully emotionally and vulnerable subject only to be curtailed 30 minutes later and nothing, from my side, released or resolved since this wasn’t the purpose of the meet-up. Suddenly my stomach area was on fire, the skin enraged, beetroot red, itchy, burning, so painful I can’t even describe. It continued like this most of the evening, following which I had a hugely disturbed night (during which I wrote many of the notes that turned into this post; see, again, how I turn my emotions into fuel to inject back into my life).

Not for the first time, I noticed much of my unresolved emotion is stored around my stomach area, into sexual organs and particularly the right hip directly over the operation scar of the unviable, life-threatening 8-week ectopic pregnancy that was emergency aborted from my fallopian tube 14 years ago, after which my health took its biggest downturn yet (writing up my timeline for the therapist flagged this up for me). Maybe there’s a shared theme there, a sort of affinity going on between my harboured emotions and this old wound of mine; a theme of thwarted potential, stymied intentions, the expectation of life turned to terminal interruption. Maybe, with my misplaced pregnancy, I share a wound in common of setting off into life with very best of intentions only to discover I’m in the wrong place, am positioned somewhere off to the side when everyone else is apparently front and centre. They are all viable; I am apparently not. Like that misplaced pregnancy, I spent the first part of my life completely unwitting that there was anything different about me, assuming I was doing my best and getting along but now I feel like the last to know; like the joke’s been on me…but only so long as I was in the dark. Now that I know why I’m different there is no joke anymore, or it’s the joke that fell flat and I’m not the butt of it anymore. The awkward laughter has dried up and I get to walk off with my head held high, now that I have my diagnosis. From here onwards, I should start to feel better…shouldn’t I?

However, when I’m still fuelled by anger (even when it’s not apparent at the surface level) this only turns the heat on me. I’m being burnt out…repeatedly…because I’m lightning fires indoors and my body can’t sustain it anymore. I need a more viable source of fuel, and to turn my anger and frustration outward to see light of day, somewhere it can be safely held and heard and processed without shame or being stifled. I need someone to want to sit with me and hear me out at last; so, the search of that person (more likely a professional than a friend) continues.

There are more healthy ways to stimulate: I’m at least learning that. Running towards rather than pushing against is a different kind of stimulus, which gets to happen more often once I can reconcile that none of it (the pain, the misunderstanding, the loneliness and rejection) was ever a waste of time since it got me to where I now am. But first I need to be heard; to find the best means for me to get all of this off my chest, my stomach, my nervous system and all those other parts that still carry it around for me. Opening the door just a crack yesterday (and my body’s response to it!) told me there is very much more to process; that, contrary to the logic I’ve fallen back on all these years, I can’t just shrug it off as ‘“all in the past” and expect to carry on as I have without consequences. Those consequences have been shouting out to me, louder and louder, through my body because I didn’t know how to process my stockpile of unattended emotions; now, I need to learn how to try.

Another big factor in all this is coming to realise I have a certain amount of Alexithymia going on, as so often coincides with autism . This is defined as “a personality trait characterised by the inability to identify and describe emotions experienced by oneself”. This trait has made for me yet another blind spot because I always thought, by virtue of the fact I can be so astute at noticing and categorising and analysing other peoples emotions, that I must also be adept at knowing all about my own…but, in all honesty, its a major weak spot for me when it comes to being able to nail my emotions as they are happening. My strong suit is compartmentalisation (as a result of my particular autistic brain arrangement but also built on years of masking behaviours): as in, I can be experiencing an incredibly powerful emotion and yet seem to be perfectly OK, even to myself, because I can push all my emotions into a storage hold and shut the door on it, especially if inconvenient. After that, the likelihood of going back to reclaim those emotions gets smaller by the minute. I am far more likely to feel a physical sensation first and reach the conclusion of some underlying emotion quite some time later (if at all) than the other way around. My body speaks to me in symptoms because I am often the last to know when it comes to the nuances of emotions, most especially when they are mine.

There are other, big, autistic factors that can contribute to this tendency to have sidelined emotions compared to other targets of attention. One is, it’s hard enough dealing with multiple sensory processing issues relating to the environment without having intense sensations coming at you “for no apparent reason” from the inside. It can become a habit, to attribute it all to the outside effects and assume the body is no more than a neutral interface, especially when you “think” you are doing OK most of the time (by virtue of fixating on self-chosen routines and interests, sticking to safe and familiar preoccupations, to occupy the surface of the mind). What I observe now is that external stimuli and internal emotions often join forces, like attracted to like: so that, for instance, on a day when something external over-stimulates or irritates, this sensation can become the vehicle for internal emotions of a similar ilk (such as anger, irritation) to jump on board. If this is the case, do I take my increasingly strong responses to external stimuli to be the measure of just how much internal emotion is now waiting to be processed internally; have I reached a crisis point, a floodgate situation? Probably…and no coincidence its synchronised with the point of realising my autism (because, without so much overwhelm, I may never have been pushed to the point of self-diagnosing).

Also, what’s the alternative to ignoring emotions when the opposite is to have constant meltdowns. Over the years, I’ve learned to try and preempt meltdowns as they can rage like a forest fire through my extremely fragile system, which is one thing that has significantly conspired to keep my emotions under lock and key. The other is that there’s so much shame and stigma around having strong emotions (certainly in my childhood family and I would say in much of our culture, the more so if you’re deemed to be an intelligent, rational person). In my adult life, its taken everything I’ve got to build such a calm and stable life so I’m terrified of rocking that boat, risking what we have by unleashing this blast from the past.

Truth be known, I harbour such deep reluctance towards displaying strong emotions, such as anger or even mild irritation, because I have accumulated a lifetime of fearfulness around allowing “undesirable” displays of behaviour lest I be rejected, even more, if I do so. Let it all out and you risk being dropped, or even being pathologised with all sorts of inappropriate labels and horrible consequences, especially if autism isn’t yet on the table (I’ve heard so many nightmare stories of people misdiagnosed with personality disorders then horrifically mishandled by the medical establishment before autism was diagnosed). It’s one thing to be prone to meltdowns, as I am…and quite another to let them happen if you get really good at putting on the breaks (as fear can teach you to do) but if you don’t feel safe to let them happen, where does all that energy go? My meltdowns used to come out when I was drunk (oh how I would let rip!) but it’s been a long time since that happened; meaning a decade and a half of harbouring what used to come out every few days, all stored inside of me!

In my case, something always cautioned me not to let strong emotional behaviours out (unless I had the excuse of alcohol), it never felt safe and perhaps I knew it would be one oddity too many to add to all my other ones. Which begs the question, do I have a long track record of pushing strong emotional reactions down as inappropriate, leaving them nowhere else to go except inwards (apart from when they can piggyback on some other excuse for overwhelm, such as sensory issues, which feel like a more socially acceptable outlet)? For that matter, did sensory issues accelerate after I gave up drinking and lost that, terrible, destructive, excuse of an outlet? Ahem, come to mention it, yes. If I could only learn to allow strong emotion to be acceptable, would some of my other vehicles of pain-expression retire? Could I decommission some of my sensory pain via addressing my emotions at the very first rumble?

The thing is, strong emotions are nobody’s fault as such, if not always so in the case of the circumstances that provoke them; they just are. Even without wanting things to change (which I vehemently do when it comes to under-diagnosis and under-education regarding female presentation autism) I have a crock-full of unprocessed emotions stored in me from over 50 years of wandering around in the dark, which is what it’s like when you don’t know about your autism enough to name or build a life for it. The need to catch up on who I really am, to get to know my real preferences, my weaknesses and strengths, the accommodations I need to thrive in my life, has been a sobering if transformative process; but I can’t just draw a line under all those emotions and pretend they didn’t happen.

Now I know what ’s behind all this stockpiled emotion (which is different to tackling some of the individual traumas I have focused on before since, really, they all come home to roost with the umbrella “reason” of undiagnosed autism) I’m able to do so much for myself. For instance, I can make all the accommodations necessary for my best autistic life, can modify my own and other people’s expectations, can explain certain things in a way that others have to now accept, even if they remain uninformed or unsympathetic (they can’t argue with autism as they have done with my chronic mystery health condition). I can now curate my life as an autistic person and cease to try and live as though I am the same as everyone else. I know that I am finally done with changing to fit in and that, in itself, is one hell of a massive relief.

However, I also have to do what I can to cease perpetuating the pain and old habits die hard. Like an oil baron that won’t invest in wind, my body needs to be persuaded that there are other sources of energy to fuel my life than this. I suspect that pain resulting from stored unprocessed emotions has become so habitual to me that making this change is no small task but there needs to be a whole change of mindset, simultaneous to running the stockpile of pain down by doing whatever it takes to process it and show it the light of day….then (and only then) can I let it all go, but only once it has been properly heard. You can’t take a source of pain that is largely built upon not feeling heard or seen as you are and then try to dispense with it by not seeing and hearing it out…all that does is prolong the agony!

Achieving this might take doing what is far less than typical for me; which is to talk it out face to face (with the right person) and that’s my next objective. In my view, such a person needs to be autistic so that we are on a wavelength; that part is top priority (but hard to achieve because I hear that autistic therapists are often reluctant to advertise the fact for the fear of stigmatisation). I find safety and comfort in written words…but maybe I can now find an outlet in spoken ones and not least because I need to achieve a sense of dialogue over this, otherwise I risk feeling like I am only talking to myself again, as ever. Its been cathartic to write this all out but, as per all of us, I need that sense of another person being on the other side of this conversation (an inability to find others with whom to dialogue being one of the most persistent traumas of my life, not least because I am so highly articulate). After not being understood as I am, misplacing my trust so many times, opening up so precariously it put me in danger, being so disappointed, and all the rest, this needs to be a person who is entirely objective and receptive to my autism, someone who will not make me wrong in my perspective or to tell me the solution is to change. Finding therapy with such a person could prove to be the single most transformative outlet of my life (perhaps the same could apply to many of us; I suspect there is a desperate need for autistic therapy provided by autistic therapists) if only I can find it; wish me luck.

2 thoughts on “A lifetime fuelled by pain and frustration: handling the emotional fallout of long-term undiagnosed autism

  1. When I was reading about your search for an autistic therapist, I thought about Dr. Natalie Engelbrecht, an autistic therapist who works out of Canada. She has worked virtually with clients, even before the pandemic. You can learn more about her here, https://embrace-autism.com/about-me-dr-natalie-engelbrecht/ . She might have good referrals, too, since she’s involved globally. Good luck! I was just thinking myself how lovely it would be to talk with someone, without masking or worrying about being “boring” because I go into so much detail! (I am forever curtailing myself in conversation.)

    Liked by 1 person

    1. Thanks so much for that, I will certainly a dive into her info. First thought though is that I am really hoping for someone UK-based and preferably local, in fact my absolute ideal would be someone who offers walk-and-talk as I find zoom calls so unpleasant (not helped by my EMF sensitivity but its also a dislike of the whole screen to screen thing) and even the idea of sitting in an “office” makes me feel uptight and unnatural. I’ve come across two walk and talk therapists so far, unfortunately the autistic one isn’t local to me and the one that is local to where we are moving to isn’t autistic (though she looks good…but I really do want to be with someone that doesn’t require me to mask or qualify my autism etc) so the search continues.


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