Two distinct sub-headings beneath the one topic of the possible impact of particularly intense or challenging childhood experiences and how they can potentially influence the rest of your life, especially in terms of health (perhaps leading to autoimmunity and chronic health conditions), especially in the context of long-undiagnosed neurodiversity, have recently come to my attention. As this is something I have alluded to a few times lately, I thought I would explore both headings within the context of developing later life chronic health issues.

Chronic Unaddressed Toxic Stress (CUTS)

I recently came across a multi-neurodivergent individual called Nat Titman giving a talk via one of my Autism groups AutAngel (which I sadly missed because I forgot to sign up; I’m hopeful they will run it again as they have before) in which they were reviewing research showing how autistic children are more prone to chronic stress, relating this to a range of physical and mental health issues that can result if not properly addressed. The talk was going to discuss sensory trauma and adverse childhood experiences and relate them to this idea of Chronic Unaddressed Toxic Stress, or ‘CUTS’.  It’s quite topical to me at the moment because, as mentioned, its something I have brushed upon a few times in my blog, including my last post The sustained traumatising effect of trying to lead a “normal” sensory life with a neurodivergent nervous system, being something I am giving a lot of thought at the moment, relative to my own experience.

The topic of sensory trauma is a huge one all by itself, especially when neurodivergence remains undiagnosed, because how do any of us know what is normal or how our peers are experiencing the world? When we don’t know what we are going through is unusual, we tend to try and put up with it for longer because we assume that everyone else around is coping just fine, meaning we expose ourselves for much longer than we probably should too, rather than seeking modifications that better suit our needs (as children, its extremely hard to get anyone to take our needs seriously enough to do anything about them so they can quickly mount up to toxic levels of exposure). Or, if we do suspect that we are different…and also in the vast minority, which is often true…this can further entrench us in our absolute determination not to show that we are struggling or “different” because we are so afraid this will single us out in some extremely adverse ways (as some degree of childhood trial and error may have shown us). Decades of feeling you have to mask the way that you really are out of intense survival fears can be one of the most long-term traumatising things and even if you ever, perhaps many years later, start to realise that you can safely unmask in certain choice contexts, you may still be left with the outcome of years of trauma so deeply embedded in your nervous system, from all the years when that simply wasn’t an option, that your health reflects this back to you every day as all kinds of stress-related symptoms.

All I know for sure is that, from a very young age, I suspected that I must be experiencing the sensory world very differently to many of my age peers because otherwise how were they all coping so well, why did they all create such an abhorrent noise level and apparently not struggle with it, such as all the screaming and shouting, all the to-me quite unbearable screeches as they pushed back their chairs in the oh-so brightly lit classroom that gave me eye-squinting headaches, so much abhorrent overstimulation and chaos everywhere and yet they all seemed to be so completely unbothered by it, to even relish it just the way it was. All these things and more were almost too much for me to deal with on a daily basis, quite aside from all the quite unfathomable social behaviours, the way they all clubbed together and seemed to know how to make friends and quickly form allies in a way that I didn’t.

Looking back, I was also severely bothered – to a distracting level that could take over my entire day – by textures of, or labels inside, clothes, by weird sensations and sometimes intense pain to do with my digestion or bladder, by the agony of having to listen to long tedious adult voices reading out information I was supposed to take in without zoning out, or sitting in positions on the floor that were excruciating to my hypermobile limbs or my need to move around. I would crash with exhaustion after eating or being overstimulated and go home so fatigued I would sleep in a chair, coiled-up in a recovery position, for hours on end yet nobody seemed to think this was abnormal (this response alone feels as though it was hard-wired into my nervous system, at an early age, as a propensity to experience significant crashes into bouts of chronic fatigue). I would burn out at the end of every term and become so anxious for the beginning of the next one that I was in a constant state of emotional yo-yo for years; yet it was insisted to me that everyone else was doing alright with all this and that I had to learn to put up with it (one of the biggest causes of chronic stress can be the frequent gaslighting that comes along with your differences). However, there can be so many other neurodivergent causes of stress than just the sensory ones (more on that below).

Adverse Childhood Experiences (ACEs)

The next sub-heading I have come across on this topic is ACES, a label which derives from a major research study done on the effects of early childhood traumatic experiences such as abuse, neglect and household dysfunction. This landmark study shows that adversity and high frequent exposure to trauma in childhood can affect both adult physical and mental health, behavioural as well as social interactions. At a quick glance through all the readily available information on this, online, there’s not nearly enough linkage being made between this and the effect of neurodiversity (especially undiagnosed) in childhood which I can only guess is a major source of such adverse experiences.

When a child experiences multiple ACEs over time, without intervention, it changes the child’s brain and body. As with CUTS, the theory goes that excessive activation of stress response systems can disrupt the developing brain, causing cognitive impairment, higher risk of infection and autoimmune disease, disruption in the hormonal systems and the way that DNA is read and transcribed. Its not difficult, therefore, to imagine the relationship this could have with the development of chronic health conditions in adulthood, the onset of which can be often be traced back to a single triggering (yet not always proportional to its outcome…) stressful event that seems to set a cascade of over-reactions off throughout the whole body system.

This is because the stress hormones that have been activated in earlier life, if left untreated and allowed to repeat or become more intense to the person experiencing them (bearing in mind how the sense of being left all alone to handle any amount of stress, even ”just” any perplexing situations, of which there are many when you are wired differently to your peers, can greatly exacerbate the intensity of even the mildest experience when you are a child) becomes toxic stress in time. As above, the resultant over production and release of adrenaline and cortisol causes a prolonged state of fear response that leads a person to walk around life in constant survival mode. It has been shown that, if left unaddressed, toxic stress can affect development, growth and lifelong health problems including chronic illness, mental health, cardiovascular health, risk of stroke, cancer and obesity.

Its not always that easy to notice chronic unresolved stress or trauma response by virtue of the fact that we tend to hide it from ourselves (note: this is why the journalling approach to TMS (Tension Myositis Syndrome; a possible cause of chronic pain and other “mystery” health issues) can be useful, look up all my other posts on this, because we can sometimes capture a glimpse of our own hidden responses by allowing them to surface, unedited, in the very moment we experience a reaction to something). According to Dr Judith Zackson, unresolved trauma occurs when the person has experienced an overwhelming event—or series of events—outside their brain’s window of tolerance. She says “The survivor protects themselves from the pain by repressing and avoiding the disturbing emotions and trying to get over the trauma by pushing it down.”

Symptoms can include hypervigilance, lack of trust, dissociation, control issues, low self-esteem, anger issues, high or variable blood pressure or cortisol levels, sleep issues, headaches, digestive issues, tightness in muscles, somatic symptoms, flashbacks, mental health issues such as anxiety, depression or rejection sensitive dysphoria and PTSD. You may seem absolutely “fine” to other people, even to yourself, but these issues can express themselves as ongoing or worsening health challenges and sudden extreme responses to triggers that you wouldn’t expect to have such an outcome.

So who gets to determine what constitutes trauma, especially to a neurodivergent person?

One of the listed categories of adverse childhood experience, in the Adverse Childhood Experience study, is household dysfunction and I would say that the level of household dysfunction (also, that you could substitute “difference” rather than the descriptor “dysfunction” in some cases…the difference itself not necessarily being the traumatic factor so much as the fact your household is not “typical” compared to others) only needs to be mild for this to have an impact on long term health, especially in the presence of autism or other neurodivergence. The very factor of your household being quite unusual in the way it behaves or the “normalities” it establishes within itself, compared to other people’s households, particularly if your whole family group is in one way or another neurodivergent, can been extremely impactful. 

For one, and this is my experience, it may require you to effect a sort of paradigm shift daily as you head off to school and then switch back again at the end of the day, which can be extremely ungrounding and demanding as a young child, especially if you are navigating this all alone, without supporters or allies, accommodations and neurodiverse siblings or friends in the school environment. You can come to doubt your own experiences or judgements of situations that challenge you daily or to feel extremely strong peer pressure to change your ways, to mask and hide away your natural responses, in order to fit in or else flounder, yet feel very a very different paradigm coming at your at home amongst family members where you are able to engage in far more openness with regard to your own neurotype. Without any clue as to your own diagnosis, the contradictory nature of all this can be hugely impactful on the quality of experience you have as a child growing up in “the system”, as I can vouch.

Also, material discussing ACEs tends to focuss (by virtue of the name) on damage done during childhood but here’s a key point that I want to raise. In the case of neurodivergence, when does the impactful, highly developmental, quicksand-shifting phase that we tend to think of as childhood really end? There are a lot of people who are neurodivergent out there talking about the fact they were slow developers, that they have still never really grown up or that it took an extra long time to do so (or that they resist the very idea of it) and I know that has certainly been my experience. In some very key ways, I still don’t feel like what that term “a grownup”  is meant to imply, even now in my mid fifties and, if I’m being perfectly honest, I just don’t feel capable of taking care of myself like an independent adult either, especially as I age with seemingly ever more physical and executive challenges cropping up, though I was never particularly good at it. I rely on my partner far more than is probably deemed appropriate by the feminist movement but in a way that is absolutely crucial to my sense of safety and emotional wellbeing. I am fully aware that, inside of my adult persona (which is one of my last bastions of heavy masking…) I am still very much a little child and, in a sense, prefer to be left alone to be that way as it feels far less triggering than any of the alternatives. I can vividly recall, when I was growing up, wistfully anticipating becoming an adult as I believed so fervently that it would somehow solve all my problems and put me in the driving seat of my perplexing life at last, but the reality has turned out to be that I am highly nostalgic for the pure simplicity, innocence and escapism of being a child (as long as left to my own devices…) as adulthood feels highly abhorrent to almost everything to do with my nervous system and executive function foibles.

So a big source of chronic unaddressed stress for me was the decade or so that I spent pretending so furiously to be a young adult, in my twenties and early thirties, but during which I was really struggling quite intensely with the demands of adult life to which I felt so poorly matched. I struggled not least in my choice of life partner, who went out of his way to be a source of constant emotional abuse, circumstantial manipulation and stress to me, in response to which I was in a near-constant state of trauma response for many years (whilst telling myself this was a “normal” relationship because I didn’t know any better). Had I had a stronger sense of my own capabilities, my options and my right to fight back, I would have dispensed with said relationship very early on (in fact I almost did…but then went back to it as it felt “safer”, through familiarity, than being left all alone in the world). Instead I sucked it up for a very long time, with dire effects on my long-term health.  I now readily associate the poor decision making of those years to my undiagnosed autism, my inability to cope with making adult choices or being independent, a post-traumatic longing for attachment to someone who might care for me (even if to the wrong person) and to the chronic health outcome that has been the direct result of so many years of chronic unaddressed stress….a very particularly high degree of stress that began the very moment I was first dropped off at school at the age of 5 and continued on for decades.

How childhood stresses can be the ghost behind bizarre-seeming overreactions as adults

I was watching a carol concert just the other day, transported back in time by seeing all the primary school children with their Christmas hats on singing under the tree. For me, it’s a mixed memory (for all I am nostalgic for the relative simplicity of that era of my own life), one that is extremely visceral and hits me right in the gut. As I watched the response of all the adults enjoying the performance, I remembered all the parents and other adults treating us (my cohort) as these cute little munchkins back in the day but for me, being amongst them, my class peers seemed far from benign. In hindsight, that’s because I didn’t fit in like the rest, I felt somehow “different” to them all from the get-go and they could be horrid, spiteful, unrelatable, unreliable, inconsistent and excluding. I felt like a loner, all except for the one person who attached to me in order to manipulate and bully me, as she did for years, preying on my differences and vulnerabilities. I often woke up before school with knots in my stomach and sometimes so scared I would feel like I could vomit though there was “nothing” particular going on.

It wasn’t like this all the time but enough to really affect me and could come back to haunt me at a moments notice for “no apparent reason”, due to some subtle sub-plot in the classroom dynamics, ebbing and flowing through the bulk of early childhood, enough so that I set myself the intention “dont ever forget how bad it was…don’t ever become another disbeliever” because it felt like I was surrounded by people who disbelieved what I was going through or underplayed it as if it was normal childhood experience, telling me I was “fine” or “imagining it”.  I learned pretty quickly not to tell people how much I was struggling because their reaction was so disbelieving and minimising that it made me feel like a whiner, invading the last vestiges of my self-perception, which I just about held together through all the quality time that I spent alone in my house doing things that I really enjoyed doing all on my own (I intensely loved my alone time, my family and my home). It got somewhat better at secondary school as I found my people at last, plus the generally more intelligent kids seemed more accepting of my quirks, but primary age felt like 6 years of non-stop stress and torture, aloneness and sometimes terror. Unlike my three siblings, who were close in age and went through the same schooling together (and who had long since moved on by the time I started school) I felt like I was dumped in it all alone, with no respite, not even (or especially) in the break-out times, which were often the worst because at least classroom time offered some structure and routine that I could cling to, along with my ability to hyperfocus on my tasks during lessons. All through school, right to the very end, I struggled with any free time when we were meant to mingle together and do “typical” things for recreation.

That message I sent to myself….”don’t ever underestimate what you went through!”…has so often come back to me and felt like a key to some of my longer term issues, especially now that I keep coming across more and more research about the effects of chronic stress upon the brain and nervous system of children, resulting in the development of lifelong traits and both physiological and psychological responses in the body that might play out as all sorts of over or under reactions in the years to come. Its something that psychologist Michael Jawer touches upon in his many articles on the subject of how anomalous sensory experiences (as experienced by highly sensitive people or those who he considers to have extra thin boundaries) can sometimes result from original attachment issues and trauma in childhood or even pre-birth (during pregnancy and labour; two other areas I have theories about in my own case). Whether or not we attach appropriately to our mother can have extremely impactful lifelong effects upon trauma responses, mental and chronic health, one of the key outcomes seeming to be a sort of irreversible misconfiguration of the hypothalamic-pituitary-adrenal (HPA) axis, which affects pretty much everything that goes on in the body and at every system and level of function, an effect which then likely worsens with age and the further compounding of stress.  One false move causing a stress-trigger in adulthood and you may suddenly find your health crashed out by something that other people experience yet easily bounce back from…but you are suddenly wiped out by a chronic condition that potentially lasts for years!

My mother was (I believe in hindsight) undiagnosed autistic, also severely stressed and massively overwhelmed by the executive demands of parenting four children in a small, often chaotic, income challenged, household at the point I came along as that unexpected fourth child. The combined effect was that she was not, initially, quite the hands on parent that she should have been until my other siblings left home, something I remember myself and which has been retold to me many times by my sister as it was she who was left picking up the slack. There was a marked difference to my mother’s parenting prowess once the others had left home; she then calmed down, had far less to deal with, became far less aloof or bristly and we became extremely close via an intimate meeting of minds, though she was never going to be tactile; but those better years meant the world to me and I then leaned on her hugely until she died (in a way, we leaned on each other, finding commonality in our neurodivergent quirks, even though we didn’t give them a name at the time). However, in those crucial first years of my development, and as my sister often reminds me, an unwieldy part of my care was left to her…and she was only 12 when I was born!

The key is…don’t underestimate your own early-life trauma load (especially if neurodivergent) because its unusual family dynamics like this that can still be playing out in your adult experience.

I appreciate that, in comparison with so many people living with extremely serious childhood trauma behind them, my back-story registers only very slightly on the rictoscale but how much does it take to knock a nervous system off-kilter, chronically and potentially for life, especially when there is unseen neurodiversity underpinning that response? I’ve known, for a long time, that the merest amount of stress can be more impactful to very highly sensitive and intense little ol’ me than it apparently is to most other people; and that, to avoid symptomatic outcomes, I need to do my utmost to keep my nervous system steady, avoid unnecessary wobbles and learn all the tactics in the book for calming my system down quickly and getting it back on track again…otherwise my health flares in some particularly bizarre and creative ways that can be as bewildering as they are severe and lasting!

In a nutshell, getting to the bottom of a stress responses that seem out of proportion to what is going on at the time can be a way of unpicking some of these childhood-rooted stress reactions in the body. You need to get to know your own nervous system, not that of some other person or as laid out in some text book or research paper. The very fact of your own particular reactions to stress existing…to you…is the only proof that you ever need that this is really happening and you probably have that track record in spade loads, so don’t doubt it any more, listen to it!

For instance, a week ago I was feeling intensely stressed by the anticipation of a social gathering involving all of my siblings and I knew, even as I wrote about this in my last post, that there was something more going on beneath the surface. I was so very anxious that my needs weren’t being heard as we made arrangements together, that they wouldn’t be met on the day, that it was freaking my anxiety out far more than if this had been a circumstance involving any other group of people, leaving me feeling oddly disempowered and unheard though very little had “happened” so far. Anyone would think I had hidden trauma relating to my siblings going on; yet the reality is that I love being around them and had a great time in the end so why the big build up of reactions in my body, resulting in an extremely symptomatic week?

I’m coming to realise that my childhood trauma didn’t come from my relationship with my siblings in itself so much as from the fact of their being so much older than me and me expecting more from them than (given they were barely adolescents themselves when I was little) than they were able to give to me…this due to attachment issues I had with my parents, both of whom were undiagnosed autistic with their own issues, in my opinion. My brothers and sister were neither aware that I was being so badly bullied and not fitting in at school, nor was it their job to do anything about it if they had known, as this was my parents’ task (or would have been if only they had acknowledged how much I was struggling but they were so comfortable in their own differences, together, and that I was really no different to them that they didn’t seem to appreciate how hard it was for me to survive or thrive “as myself” in the neurotypical outside world). I was fine at home so they just didn’t see there were issues at school, where all teachers saw was a heavily masking, hyperfocusing and “shy” little girl.

So the repeated trigger point playing out for me, even now, is anyone in my family “not believing me”  or “seeing how much I am struggling”, meaning I still get the same physiological response of dread and high stress from any mildest thing that makes me believe they don’t take my health issues or disabilities seriously (because they don’t really understand them…and why would they, since they don’t share the same issues; chronic invisible health conditions are extremely hard for anyone else to relate to, family or not). In other words, there’s some sort of old wound still playing out inside of me from the fact that they all had each other whilst growing up and could be themselves more successfully during their school years and, meanwhile I felt all alone and I guess, in a sense, abandoned to my plight, my struggles not being registered or met, during all those highly stressful early years, by which time they had largely flown the nest (another issue in itself as this impacted me hugely).

A big part of this old trauma response, I suspect, is that I misplaced what should have been attachment to my parents by attaching more intensely to my siblings and especially, in that way of being a surrogate mother, to my sister by virtue of the fact she was the one charged with looking after me so much when I was very small (she fed, soothed, changed, walked, played with and woke up in the night with me when I was still a baby). This confusion was aggravated all the more by her taking a role as a trainee teacher at my school around the time I was in the thick of being bullied at the age of 6, only she wasn’t allowed to give me any special attention in that context and would actively ignore me at school to avoid being accused of favouritism. Subconsciously, I think I still look to her to be a parent to me, especially as mum died when I was so young, an expectation that then traumatises me when she is, quite understandably, not able to deliver. Shortly after mum died, when she was 40 and I was in my 20s, I had a major meltdown with her and I now think it was because she wasn’t living up to my expectations in that role at the time I felt so precarious due to mum’s sudden death, as we had become more close in those final few years, only for me to lose her all over again. Ineffectual or misplaced attachment, as you can see, can cause a whole can of worms to open up later in life and I have had to unpick all of this for myself in order to see the light of what may be happening in my family dynamic.

I am still having to retrain myself to treat my sister like a sibling and a friend instead of subconsciously measuring her against the very high benchmarks of being a surrogate parent, which comes with a whole load of different expectations. I strongly suspect this has been one of the major confusions of my life, one that has left me feeling ungrounded, bewildered and at the constant risk of being let down or hurt by an expectation of receiving far more support from certain people than they were in a position to give me, serving as a trigger and source of disappointment at any time I subconsciously registered that my high needs weren’t being met. Already, I am noticing that when I reset those expectations to the simple enjoyment of being around people in my family who are far more relatable to me than anyone else, due to similar neurology and shared experiences, instead of needing to be “looked after” by them, I really enjoy myself and relax a whole lot more. In a sense, its finally time for me to grow up on this point…but it is all a big nod towards the fact that I was not adequately looked after, nor my specific needs met, when I was a child, which has been a lifelong source of the kind of subversive, extremely hard to pin down, trauma response that can then feed into an overreactive nervous system and chronic health issues.

When this kind of stuff happens to any of us, it’s non-linear; meaning it’s not trauma happening way back when but right here and now because the effects of it are still here, in your reconfigured nervous system, which got resculpted that way when you were in the thick of the trauma responses of earlier life. Therefore, the “logic” for your present day response may be missing but you have to get past the need for linear sources of cause and effect and dig a lot deeper. Its time to pay attention to this trauma response as its happening, no longer playing it down but giving it the full attention it needs because the spotlight of attention will start to loosen up its chronic grip on your life!

The recommended approach to CUTS and ACEs is, unsurprisingly, prevention, also the raising of awareness but of course a trauma informed approach to treating the outcome is the way to go with recovery. As I wrote about last time, the all-important use of that word trauma, as a milestone of no longer underplaying the often devastating effect certain apparently low key (by anyone else’s standards…) circumstances happening “years ago” can have on a persons long-term health, is another key step in the process. No longer underplaying what (and this part is pivotal)…to you…was pretty traumatic at the time it was happening is the beginning of unpicking the repeated trauma response that keeps replaying on cue whenever certain subtle reminders take you back in time, again and again, to when your unique needs weren’t adequately met or when adverse conditions had to be put up with, day after day, that were highly damaging to your sense of safety of selfhood at an extremely formative time in your life. It’s time not to underestimate these effects and to look them straight in the eye, honouring what you went through and providing all the necessary self-care, including acknowledgement, in order to efficiently mop-up any further collateral (not letting it keep building-up!) whenever it occurs.