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5 minute read Autism sensory trauma

Sensory Trauma

I’m sat at my desk at work. Outside the lorries have been reversing non-stop since 8am. Each “beep beep beep” sends an arrow of pain and shock straight into my chest whilst simultaneously burning my eyes and ears. I can hear my colleagues laughing and joking in the corridor outside, completely oblivious to my pain and to the lorries. I don’t want to go and see them because the tsunami of perfume and aftershave mixed with the sudden change in brightness when I leave  my dark room for the fluorescently lit corridor will hit me so hard it will almost wind me. And their voices will get even louder, and the laughter will hurt my ears and make me jump and sound like someone chucking a bag full of spanners into a washing machine on spin cycle.

But it’s ok. I stay where I am, hyperalert and shivering at the thought of someone opening the door to my office to see me. If they do, I will need to quickly whack my mask of normality on, and pretend all is well – and nod my head and make eye contact and fight the urge to hide under my desk and sob. If I am  lucky I will still be able to speak but will probably say something a bit awkward or slightly out of place as my overloaded brain tries to coordinate thoughts into spoken language.

I’ve tried to tell people how my world is. Some doctors thought I was mentally ill. Some colleagues thought I was unsociable. Teachers thought I was lazy, distracted or not trying. Some friends thought I was weird. Some partners assumed I was overreacting. I always knew I was different but couldn’t quite say why – if I wasn’t an alien; and it wasn’t pathological; it couldn’t have been spiritual, then what was it?

The trouble is this is my reality every single day. All day. It is not an overreaction. It is not an exaggeration. It fluctuates so can be difficult for myself or others to anticipate.

The answer:

This is how my sensory processing works. Nothing more, nothing less. Simple. My sensory processing system works differently to the majority of peoples.

Why is my sensory processing different?

Again, the answer is relatively straightforward. I am autistic. I was born with a sensory processing system that works differently to other peoples.

My earliest hospital notes refer to how I would not feed or would feed very slowly and if someone persevered with my bottle of milk, I would typically fall asleep whilst being fed.

Roll on 47 years and I am still the last to finish my meal. A few weeks ago, I was discussing this with a friend who is far more knowledgeable about sensory processing than me. We were both eating an apple and I discovered that I have a completely different awareness of sensations in my mouth than she does. I can feel food on my lips and the tip of my tongue, and then again as I swallow, but in the centre of my mouth I have almost no sensation. This means that when I eat I feel very stressed because I never know when food is going to reach the back of my mouth. I frequently gag and I am highly anxious about eating because swallowing often comes as a surprise and catches me out. My awareness of how my body feels is muted.

This is quite different to how my hearing works. My brain tends to process sounds as very loud and harsh. Some people may refer to this as hypersensitivity. Whereas my brain processes sensations in my body as quite muted. Hyposensitive interoception you might say. These terms are all well and good for clinicians who are not autistic – they tend to feel comfortable using their sensory experiences as the “norm” and measure my experiences as “too much” or “too little”. My normal is different though and always has been.

This experience with my friend and the apple helped me understand more about how my sensory system works. Interestingly I was yawning non-stop by the end of our focused fruit eating session, and I did have a lie down and sleep afterwards. This is very typical of how a human being’s nervous system works when we are in danger. Fight, flight, or freeze. My parasympathetic nervous system responded to my stress and I couldn’t help but crash out for an hour or two. Just like I did as that tiny baby who felt distress at having something in her mouth from the moment she was born.

My reactions to certain sensory information are totally proportional to what my brain is processing. It is logical to run away from danger, or fight if your life is being threatened. Completely normal to freeze if you are terrified, or collapse and disconnect if everything is too overwhelming.

The difference between myself and someone who experiences eating an apple as mundane; or laughing colleagues as insignificant; or reversing lorries as mildly irritating at the most – is the way our sensory processing systems work. My brain processes those sounds and sensations differently to the other person I have just described. My brain gears my body up for action or inaction because it perceives a threat that the other person does not.

My reactions are normal for me. Their reactions are normal for them.

I have always been like this because I am autistic, and for me this is how my sensory processing system works. It is not a choice; it is part of my neurology. Other autistic people have their own sensory processing experiences because we are not just made up of our neurology, we have our physiology; our life histories with all their joys and traumas; our individual personalities; and our own psychologies, capabilities and characters.

Each of us perceives the world differently. To me, a vacuum cleaner may be a terrifying source of noise that looms towards me, spewing its musty, dusty smell and roaring like a belligerent dragon. To you it may be an innocuous piece of cleaning equipment whose only fault is it takes up too much room in the cupboard under the stairs! I understand perfectly well what it is for. I’m certainly not scared of it and I absolutely don’t feel any emotions towards vacuum cleaners in any form – positive or negative – they are vacuum cleaners for goodness sake!  

Aaaargh – It’s got a face!!! A vacuum cleaner that wants eye contact!!!

For me, this piece of equipment causes me great distress because of the effect it has upon my senses. For you it is fine. We both see the same item, understand its intended function in the same way, but our relationship with it is very different. It causes me pain in my ears and makes my body react as if I am being attacked… It cleans your carpet.

There is no right and wrong in this situation. We perceive things differently. A bit of mutual understanding can go a long way. So can a bit of common courtesy. I wouldn’t do something that hurt you, so please don’t do something that hurts me. I cannot desensitise myself to this, its how my body works.

Of course, many of us grow up assuming our perception of the world is shared. I didn’t know that most people don’t have to have their food arranged in a certain way because vinegar or sauce touching bread would require the  whole meal to be thrown away due to the unbearable texture created when bread gets damp. You may find that outrageously picky and assume I am spoilt or attention seeking. You may assume that everyone finds the smell of perfume enjoyable (they don’t!) or that everyone likes to look at spreadsheets on a computer (believe me I can’t!) or that brushing your hair is easy (some days, it really, really isn’t!).

My reactions to sensory information may well appear unusual to you. But for me they are logical and proportional.

Spending my day to day life in anticipation of what distressing sensory experiences may happen next takes a toll on my health and wellbeing. It is not healthy to spend my life in an activated state, hyperalert because I am scanning for latent danger. The ordinary activities that happen frequently throughout the day are an unavoidable potential source of trauma for me. And maybe people won’t understand when I demonstrate how distressing they are – perhaps they will think I am overreacting or have challenging behaviour. Maybe they will pathologise my reactions and mislabel them or not even believe me at all.

My experience of the world and the way I react to it has impacted on how I am perceived by others; how they have responded towards me and how that has affected our ongoing relationships. It made me more vulnerable to other types of adverse life events and left me growing up without a sense of agency. I was left invalidated and unheard.

I’m not the only one…

Autistic people have been describing their sensory differences for a long, long time. Blogs, interviews, and personal testimonies are filled with evidence of sensory differences and the effects these have on autistic people. Autism and trauma are discussed together frequently. They can manifest in similar ways and be difficult to tell apart. Being autistic increases vulnerability to trauma – of course it does! Being in a minority in a neurotypically biased world where your differences are perceived as deficits is not a good starting point for anyone.

But there is more to it than that…

The way I perceive the world through my senses is in itself traumatic. Repeatedly experiencing unavoidable pain every day that makes my body react as if it is in mortal danger is traumatic. Not being believed is traumatic. On top of all the trauma I have experienced due to the impact of my autism and the adverse life events that I have been through, I have experienced trauma since birth. Perhaps even before birth. This is sensory trauma.

Sensory Trauma has been hidden in plain sight for a long time. It is time to start some conversations about this lived experience of autistic people. It is time to be listened to. At Autism Wellbeing we have prepared a position paper about Sensory Trauma and made a short video about it.

I would like to hear other peoples experiences of sensory trauma. We are publishing our book soon and are interested in feedback on our position paper.

Our position paper has been published by ourselves at Autism Wellbeing because we want it to be read as widely as possible. It has only just been made available – please leave a review on amazon if you decide to buy it. You can purchase the position paper here:

For USA based people please use https://www.amazon.com/Sensory-Trauma-DIFFERENCE-EXPERIENCE-Wellbeing-ebook/dp/B08JKW5H1N/ref=mp_s_a_1_2?dchild=1&keywords=Sensory+trauma+autism+sensory+differences&qid=1601370659&sr=8-2

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5 minute read Autism identity

Body Image and Autism: a personal reflection…

Is your body an ok place to be?

Does it feel safe?

Are you even sure it is you in there?

Our body image is not just affected by the messages we receive from other people, but by our health, life experiences, upbringing, and personal values – and many more things besides.

Body Image has been a topic of concern for many years. We are bombarded with unrealistic images of unobtainable bodies whenever we switch on the television, view advertisements, or access social media.  

The image that we form consists of several factors:

  1. How we perceive our body. How thin, tall, fit, or attractive we are. This may be accurate or inaccurate.
  2. How we feel about our body. Do we like how it is and how it works?
  3. What we think about it. Perhaps we think we should be fitter or healthier, or maybe we’re just right?
  4. The way we treat our bodies. How we care for ourselves, whether we exercise, harm ourselves intentionally or unintentionally, our relationship with eating.

Autistic people may experience all the same type of things in life that affect their typically developing peers, and they will be subject to the same media portrayals of ‘perfection’’. In fact, autistic people may be more likely to experience adverse life experiences such as relationships breaking down; employment and school issues; and poorer health outcomes – simply because their particular neurology puts them at a disadvantage. The way each of us perceives, thinks about, feels towards, and treats our body is complex and made up of a multitude of different factors.

I believe there are some additional factors to consider for autistic people. We may be more likely to experience ‘face blindness’ and have difficulties recognising individuals. We often have strengths in focusing intently on specific topics of interest, we may experience perseveration and a reliance on routines and rituals that help us organise our worlds. This could be responsible for some autistic individuals becoming excessively focused on diet, calorie counts, or exercise regimes. It may make breaking habits that are harmful towards our bodies more difficult too. An autistic person’s sensory processing may impact on their body image as well.

From a sensory perspective, I’ll explore my own experiences and reflect on how they have affected my life.

Proprioception

This has a significant effect on my relationship with my body. My muted sense of where the various parts of my body are in relation to each other means I am frequently misjudging doorways and bruising my arms in the process; I trip over my own feet; and I lift and throw with totally the wrong amount of force required. I find negotiating stairs and escalators very tricky, and if I can’t see my feet, I may as well not bother.

These type of proprioceptive experiences are well documented in accounts from autistic people. They undoubtedly impact on my self-esteem. I am not graceful, or elegant; ever. I don’t dance in public, I’m rubbish at sport, and even walking across a room requires the same kind of internal self talk one would say out loud to a blinfolded person navigating the same route! What I think and feel about my body is never particularly positive. My perception of where my body starts and ends is muted too. I recently cleared out my wardrobe and found a coat that I had bought. It was way too big. In fact, it had always been too big and my husband recounted how I have always bought clothes of the wrong size.

The image I have in my head of my size is not accurate. Not just in the fairly typical way many of us look back at old photos of when we were younger and slimmer, and wish we were as “fat” as we thought we were back then. But in a very genuine way where I have no idea whether I will fit through gaps between cars in car parks, or be able to choose which clothes size to try on in a shop. It is not just a self-esteem issue where I exagerate my weight, but a fundamental difference in how my senses work. I have no idea what size I am – and all those other factors like peer pressure, the media, my health and relationships play into an already wobbly body image.

Interoception

Knowing how I feel inside, and which emotions I am experiencing, or what my body is telling me I need to do – eat, rest, go to the toilet, and so on – these sensations are frequently muted too. I don’t know if I like you, I’m not sure if I even like me half the time either!  

Until recently, when I looked in the mirror, or at a photograph, I had no strong sense that the image was of myself. I remember as a child thinking deeply about what makes people separate from each other. I must have been around seven years old (because I remember the exact spot in the exact street where this ‘revelation’ hit me) and it struck me that I was everyone else and everyone else was me. I cannot put it into words accurately, but it was an incredibly powerful experience. When I reflect on it, I still can’t quite capture what it was that I had discovered, but I know it is something to do with interoception and identity. I had incredibly clear ideas about who I was – I always did, but they were logical, thought-based, and completely detached from any feeling of who I was. I could have been anyone – where did Emma start and end?

This year I taught myself how to recognise myself. I had already begun a process of reflecting on photographs and noticing in a very mindful way that they were of me. I also built up to the point where I could see myself on camera for the inevitable conference calls the Covid-19 pandemic has forced us to  partake in. It was a painstakingly slow process, but I can now watch myself in a short film. Prior to this, I was filled with dread, horror and nausea whenever I saw myself. I could not connect in any way with the image in front of me and I found it terryfying that a stranger was saying my thoughts out loud, or was wearing my clothes.

I have embarked on a process of learning about my interoception. I need to take it slowly. Recognising my emotions and bodily functions as my own, feels as terrifying as when I recognised my outer body as my own too. On both occasions I experienced a massive sense  of overwhelm in the days and weeks after my sensory renaissance. A mixture of novel delight, fear, and wonder. Mixed with an almost painful sense of self-awareness. It felt important to gently nurture this and not push myself too hard.

My other senses play an important part in creating my body image too. All of us experience the world through our senses. When acting ‘normal for me’, my brain processes this sensory information in muted or intense ways, compared to typically developing people. When I have additional sensory, social, or cognitive demands to process, my sensory processing can become even more extreme. This means that my world feels inconsistent, unpredictable, and disordered.

The way my brain processes the visual information about how I look varies from day to day. Some days I can smell myself strongly – particularly if I have been unwell or terribly upset. I give off a distinctive chemical body odour. I can frequently hear my heartbeat and the blood rushing through my body. My sense of touch is hypersensitive, and I flinch at a light touch. This makes me upset because it appears like I am rejecting the very people I wish to seek comfort from. All of these factors influence how I perceive my body and how others perceive me. This impacts on how I am treated and how I respond to others too.

No reflection on body image would be complete without discussing food and eating. My gustatory processing works in such a way that I have very particular needs when it comes to flavours, textures, and combinations of foods. I have written about autism and food elsewhere, but in brief, I tend to prefer certain colours of food. I lack the imagination to think up original meals and tend to opt for familiar foods. My sense of taste fluctuates, and I can find particular flavours are so extremely unpleasant my body reacts as if I have been given poison!

My need for routine and familiarity (in order to calm my chaotic world) can result in restricted diets. My anxiety and sensory processing can encourage me to avoid mealtimes. As a teenager, my poor executive skills led to me being disorganised and eating quite a limited diet. This resulted in weight loss and poor health. My energy levels frequently soared then crashed in response to my unhealthy eating patterns. This probably had an effect on my emotions and self-esteem too.

Each of us will experience a complicated mix of factors all interplaying to help influence our body image. Our internal and external body awareness will give us a ‘sense’ of our bodies, and our thoughts, beliefs, and feelings about this will play a part too.

As autistic people we may experience additional influences on our bodies – in the form of our atypical sensory processing, and our need for routine, ritual, and repetition. We may intuitively know how to regulate our senses and emotions too. This may be in uniquely autistic ways. Many autistic people find repetitive movements, sounds, visual images, and other sensory input is fantastic for helping with focus, relaxation, stress relief, and joy. These activities can bring a sense of peace and predictability to our bodies and make them feel ‘safe’ and ‘connected’ to our whole self. This is certainly my experience anyway. Unfortunately, these activities may be seen as inappropriate, or a subject for teasing, scorn, or punishment.

Imagine living in a body that feels clumsily out of your control; that shifts its shape from day to day in front of your eyes; that reacts physiologically to the ebb and flow of a restricted diet and rigid exercise plan; and recoils  uncontrollably from flavours or touch.

Go back to my opening questions. Is that body a place that feels safe to you? Is it an ok place to be?  When what you ‘know’ doesn’t match what you ‘feel’, because you feel nothing but know everything – are you sure it is even you in there?

Is it surprising that so many autistic people are diagnosed with eating disorders, or self-harm, or are vulnerable to abuse? How do you even consent to another person entering the space of your body when you don’t know where that starts and stops?

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Autism, emotions, and synaesthesia.

When I searched the internet for a quote that would capture how autistic people experience emotion, I found plenty of search suggestions along the lines of, “Do autistic people have emotions?”. I wanted to get away from the popular type of search results that frequently reinforce stereotypes of unemotional autistic people so went for something a bit more academic and science-y.

There was plenty of research on autistic deficits and  research questions were posed about whether empathy can be taught to autistic people. I also found other research into why autistic people don’t experience emotions.

I cannot honestly say that I felt ‘uncomfortable’ – my emotions don’t work like that. But my very logical mind began matching all these search results I was turning up, against the reality of my own lived experience of autism, and the realities of my peers, family, and clients. It just did not fit!

I “know” that autistic people experience emotions and in diverse ways just like everyone else.

So, I decided to see what the NAS had to say (The National Autistic Society – a well-known UK based organisation). They made a few mentions of autism and emotions in various sections of their website, typically in relation to challenging behaviour or emotional difficulties.

Overall, the perception online seems to be that autistic people may not experience emotions, or they may experience them in out of control ways.

Initially I disagreed with this.

However, after reflecting on this all day, I realise that “yes, we can look like that to people who aren’t able to empathise with us”. I personally believe that non-autistic people struggle with empathising with autistic people just as much as autistic people struggle with empathising with them.

This blog is my contribution to the discussion. It describes how this topic works for me. It may not be relevant to everyone else, or even anyone else, but if it creates an interest in what autistic people may be feeling under the surface and a willingness to explore this with them on their terms then great!

I went off on a wonderful tangent looking for a clear definition of what an emotion is. I discovered articles about the philosophy of emotions and the history of emotion too. I found there were evolutional and theological theories of emotions, and all manner of schools of psychology, neurobiology and sociology that added to the discussion. There is no simple definition – the subject is complex and broad and there seems to be no scientific consensus on a definition.

Most simply put, emotions are states associated with the nervous system brought on by all manner of different things, including our thoughts and behaviour.

Currently there are eight senses associated with humans. The five we probably learned at school: sight, smell, taste, touch, and hearing. The two associated with knowing where our bodies are – proprioception; and the effect of gravity on our bodies – vestibular. The eight sense is interoception – the sense of knowing how we feel. This includes feeling emotions and feeling bodily sensations like needing the toilet or hunger.

For me to describe how my emotions work, we need to consider my overall sensory processing.

My sense organs work fairly typically. My eyes are very short-sighted, but my vision is corrected with glasses. If an audiologist examined me, they would probably say that I have no issues with my hearing. My sense organs take in information in a fairly typical way. However, once that information reaches my brain, it is processed very differently to that of my typically developing peers.

Sometimes I need more information than most people need, in order to register a sensation – I like a full-strength hug not a gentle one for instance, or I can spin on a roundabout without feeling queasy.

Sometimes I need extraordinarily little sensory information to register the sensation – I can hear conversations in a room down the hall, and a door slam sounds as loud to me as a firework does to my neurotypical friend.

And this is where I would like to introduce you to the eight sense: interoception. It works just like all the other senses. It is not responsible for making emotions or affecting them in any way – just like the ears are not responsible for the noise they hear. Our interoceptive sense enables us to notice or recognise or be aware of how we feel.

If the way our brain processes sensory information is muted in so far as interoception is concerned, then we may not feel emotions, or the need to go to the toilet, or that we are hungry or in pain. If the brain processes the sensory information too intensely, then we may notice every sensation within our bodies, or feel emotions more strongly than other people do.

And just like all our other senses, our interoceptive sensory processing can work differently in different circumstances, or on different days.

Here are some ways that a person who experiences atypical interoceptive sensory processing may appear to an outsider, with my thoughts on what may be happening on the inside:

  • Doesn’t show emotions (maybe they are having emotions but not noticing them?)
  • Over-emotional (maybe that emotion genuinely does feel that strong to them?)
  • Loses their temper for no reason (perhaps they didn’t notice the sensation of becoming angry until it was too late to manage it?)
  • Moans about every tiny ache and pain (maybe their ‘tiny’ ache feels as painful as someone else’s broken leg?)
  • Doesn’t notice they have a severe tooth infection (perhaps the pain hasn’t registered with them?)
  • Won’t learn toilet training even though a reward system is used, and they fully understand what a toilet is for (maybe they can’t feel the sensation in their body that tells them they need to go?)
  • Has no empathy and doesn’t care about anyone else (maybe they don’t know how they feel themselves, so can’t imagine how others may feel?)
  • Blunt and insensitive – poor social skills (perhaps they have no personal concept of how unpleasant it feels to be spoken to abruptly?)
  • Easily led, vulnerable, promiscuous– forms relationships with anyone who asks (maybe if they don’t know if they ‘like’ people, they will politely become anyone’s friend?)

Perhaps autistic people ARE having emotions but just aren’t feeling them? No one would say that because I don’t feel hunger I shouldn’t eat. My care givers would be seen as neglectful if they didn’t feed me just because I never noticed I was hungry – food is a basic human need – everyone must have it.

So how about we look at emotions in that way too? Just because I don’t feel sad or show that I am sad, doesn’t mean I can be ignored when something sad happens. To deny me the compassion shown to my more typical peers following a tragedy, is as neglectful as denying me food just because I’m not hungry.

My personal interoceptive experiences tend towards the ‘needs a lot of input to register’ aspect of sensory processing. Growing up, this gave me the appearance of being aloof, disinterested in people, unemotional and cold. On a good day, I could appear strong, brave, and steadfast.

As an adult, I can still be interpreted in this way but I’ve learned to play to my strengths and there are times when the ability to remain calm in a crisis, keep a level head, and make objective decisions under pressure pose an advantage over my more typical peers.

When I was a girl, I knew I was different. I thought I must be a terrible person for being how I was. I remember despairing over my lack of ‘normal’ emotional responses and wondering what was so very wrong with me. Deep down inside I knew I did care and that I was kind and thoughtful (and my goodness, am I thoughtful – I cannot do anything without thinking it through in full first!) but somehow my experiences, my thoughts and my emotions seemed out of synch with each other.

I can remember experiencing traumatic events that would have made any normal person cry or feel distressed and I felt nothing. And not just because I shut off to those experiences. To my young self I wondered whether perhaps I was somehow to blame for these things? Surely I must want them to happen if I’m not even upset by them?

And like every other human, I am more than a product of my genes and neurology. My experiences naturally shaped me and added to the way I experience emotions. A complex cycle was created:  My autism affected the way I behaved in response to sensory information; and thus influenced how others treated me; which then influenced my further responses; and so on…

My interpersonal relationships were different to the relationships between my more typical peers. I struggled to develop the skills that would enable me to relate to others with ease. I didn’t feel things like other girls did and I didn’t act like other girls did. I tried my best to copy and pretend sometimes, but on the whole, I was content being self-contained and kept myself to myself, lost in my own world of music, books, and nature.

I was labelled as unemotional and eventually believed that meant I must be uncaring too. Perhaps I was kidding myself that I was alright really? Perhaps my knowledge that I was fundamentally ok – just different; was wrong?

I feel it is important to recall at this point in the blog, that other autistic people may have the ‘doesn’t need much sensory input to register’ type of interoceptive sensory processing. They may empathise with others so intensely it hurts them. You will see how different we all are, but by viewing our emotional responses as a result of our sensory processing it may make more sense of why that is.

At this point, my blog heads off into a little discussed phenomenon. It helps me explain my emotional responses but is my opinion and nothing more. As I learn more about myself, autism, and the complex science of emotions, my opinion will likely change. This is how it makes sense to me at the moment, based on the knowledge and experience accessible to me at this current time.

Synaesthesia is a perceptual phenomenon in which stimulation of one sense leads to an involuntary experience in a second sense. It is widely documented throughout history.

For me, the acidic green of newly opened beech leaves is the colour of the musical chord A minor. C major is sunshine yellow, G minor is matt aubergine. I only see chords in colours not individual musical notes.

My ability at mental arithmetic comes from my experience of single digit numbers as coloured shapes – I can visually click them together to do sums very quickly.

Synaesthesia explains how some of my other senses experience information that was not intended for them. Hearing in colour is a common example. It comes close to explaining my emotional responses.

I’ve described how I believe I actually do experience emotions, but I don’t always feel them or show them. Just like I may not feel hungry, but my body still needs food. As I’ve developed a greater understanding of myself, I recognise that in fact I have more awareness of my emotions than I realised.

As my self-awareness has developed, I have noticed what happens in my body in response to different stimuli. When I have tried to explain this to some clinicians, their response has not always been accepting, or even inquisitive. Very often my descriptions were interpreted as a symptom of mental illness – delusional in fact. I would prefer to see my emotional responses as a form of synaesthesia rather than my “brain not working properly”. Here are a few of the many examples of emotional synaesthesia that I have experienced across my lifetime. Remember – the emotion is there just like it is for every human, but my brain processes it differently due to my muted interoception – which means I may not feel the emotion in a typical way. This processing sometimes appears as synaesthesia. My sensory processing is frequently muted or over-responsive anyway, but these examples are outside of my ‘normal’.

  • Sadness – my vestibular processing is affected, and I can feel extremes of seasickness when changing direction or speed on a walk; or fail to become dizzy when spinning at high speed.
  • Shock – vision becomes pixelated.
  • Happiness – colours get brighter – especially green, that’s why I love nature.
  • Stress – vision becomes distorted and objects lose their definition.
  • Tiredness – hearing becomes painfully acute.
  • Very sad – food tastes gone off.

I have started viewing these signs of how my brain is processing sensory information as “my” emotions. They are consistent enough that if someone were to ask me how I felt, I could confidently give them the name of an emotion that would match their neurotypical expectation of my experience. This helps them understand and helps me get compassionate responses from people. But it bugs me, because it’s a lie! I don’t feel sad, or happy, or stressed, necessarily at that time.

As practitioners we often support people to identify and name their emotions in order to help them get their needs met more effectively – my account is worth considering whenever we do this. Wouldn’t it be lovely if when someone asked how I felt, I could honestly say ‘seasick’. And they would know me well enough to appreciate that my seasick was the same as their sad. That would really help meet my needs.

I mentioned a key phrase back then; “I don’t feel sad, or happy, or stressed, necessarily at that time.”

I have always been aware of this out of synch relationship between my emotions and thoughts. If I need to process what other people would define as an intensely emotional experience, I can analyse it to the point of understanding it at an almost atomic level, but it will still rotate around my brain for years and not lay down to rest. The emotions can’t be forced. I am no more able to tap into emotions now than I was as a young girl.

I don’t see this as a problem anymore. This is how I roll! I am better able to process experiences now that I accept my atypical way of feeling those emotions. When I experience an emotional event now that I understand and accept the way my emotional responses work, I can still analyse the event to gain clarity and process it cognitively. I can also acknowledge that my sensory responses are ‘normal for me’ and nothing to be scared of or view as a mental health relapse indicator. I don’t give myself a hard time because I’m not feeling what I should be feeling. Sometimes I get the feeling much later anyway.

A recent example is of a bereavement that I experienced in November 2019. My initial responses were logical, practical and helpful. My sensory responses were visual disturbance, taste disturbance and hypersensitive hearing. My initial feelings were frequently related to the frustration of my ordered world becoming disordered through the loss of a key figure in it. I may have appeared unemotional, brave, strong, distant, or inappropriate. In June 2020 I felt sad and I cried for the loss. It properly hit me what the loss meant.

The worse thing about feeling emotions in this way but in a delayed manner is other people’s responses. I can look like I am not coping, or attention seeking, or struggling.  Everyone else has moved on from these emotions, just as I am arriving. What I would have loved last month more than anything, is to have had the warmth, compassion, love and sympathy shown to me that was shown towards the people who were grieving like that in November. I appreciate that’s not how these things work, but this was a delayed response not a maladaptive one. Frequently I have not received the support I need from others because my timing is wrong or I have hidden my needs because of how it will look if I bring things up all this time later. Can we be kinder human beings I wonder, by giving people what they need, when they need it – even when it doesn’t fit in with our expectations of timing?