Category: interoception

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5 minute read Autism identity interoception sensory trauma Uncategorized

Making sense of feeling unsafe

A blog about mental health, emotional distress, autism and hope.

I feel like I am unravelling. Thoughts are like words outside my head. My body seems to be somewhere else. Where “I” end and everything else begins seems fuzzy, fluid, and fucked up.

Am I in pain? I don’t know.

Am I upset? Not sure.

What do I want and need? No idea – and please stop asking all those difficult questions!

I’ve had a tough few weeks that culminated in a car crash a fortnight ago. The hospital scans show that thankfully, I have no broken bones. My bruises reveal I am injured. My sensory processing indicates something is very, very wrong and I must prioritise self-care.

The one question I can answer is “Do I feel safe?”

My answer is a resounding “NO!”

My lived experience of mental illness, emotional distress and sensory processing differences, is one of fear, uncertainty and feeling very, very unsafe. As an autistic person, my experience of the world tends to be chaotic and unpredictable at the best of times and when I factor in traumatising events, illness and injury, the chaos goes up a level!

Sensory Processing

All of us experience the world through our senses. In addition to the five senses that are involved in processing sensory information coming into our bodies from outside: touch, taste, hearing, sight, and smell, we have three more sense systems: our proprioceptive, vestibular and interoceptive sense systems.

Our proprioceptive sense system is used to process where our body is in space and where our limbs are in relation to each other. Try this… Close your eyes, put one arm out straight in front of you with your thumb up. Then, keeping your eyes closed, reach out with your other hand and arm and grab that upright thumb. How you perform is based on your personal experience of proprioception in that moment.

Our vestibular sense system is used to process the effect of gravity on our body. Some of us love a rollercoaster, some of us feel queasy on a calm sea.

Our interoceptive system is used to process emotions. These emotions are grouped into homeostatic emotions which include tiredness, hunger, pain, needing the toilet, and our other internal states; and affective emotions which include anger, excitement, fear, joy and all those other feelings we experience.

The way we experience sensory input depends on our unique sensory profile – those sensations we enjoy and seek out, and those we dislike or avoid. Autistic people tend to have sensory differences because although our sense receptors (eyes, ears, skin etc.) could be working fine, our brains frequently find there is too much or too little sensory information to register. This means we may experience sensory input in heightened or muted ways.

How we experience emotions will depend on how we experience interoceptive signals. For some of us, some of those interoceptive signals may be muted – perhaps we don’t notice we are hungry until we are so ravenous, we can’t stop eating. Or perhaps we might – like me – try and walk off a dislocated knee as it twinged a bit but surely couldn’t be anything serious! If we experience interoceptive signals in a heightened way, a small amount of pain may be unbearable or we may always feel like we need the toilet, even when we don’t physically need to go.

Like most autistic people, I tend to experience sensory input differently to non-autistic people. My personal sensory profile is typically one of muted proprioception and interoception, whereas my sense of hearing and smell are often heightened. But this varies, just as it does for all of us. If I have a lot going on, my muted proprioception gets even more muted and I’ll find myself bumping into doorways even more than I usually do. My hearing may get even more heightened and human speech pierces my ears with pain and vibrations that make me respond as if I am being tortured.

My personal sensory experiences are like most peoples (autistic or not) – variable – and dependent on how I feel, who I am with and what is going on around me. Sensory processing is dynamic. This may sometimes be misinterpreted as the autistic person over-reacting or deliberately being oppositional, especially when on one day they may tolerate a sensation e.g. the noise of the dishwasher being unloaded, but find it painful the next.

When my wellbeing is poor, when I am ill or stressed or already processing too much information, my sensory experiences become more extreme – even by my own standards. Unsurprisingly, the events of recent weeks have resulted in my brain having way too much to process, and my sensory processing experiences have let me know all about it!

How might this look?

Most people are probably unaware that our brains are constantly working away in the background, fine-tuning sensory information. We need a balance of sensory input to be at our best and to learn and take part in social interactions. This seems so obvious, it hardly needs saying, but for those of us who often find there is often too much or too little sensory information, life can be more difficult. Those of us who are autistic are likely to experience differences in how we process sensory information. In addition to experiencing heightened or muted sensations, our processing of sensory information may be distorted or delayed or fragmented. Some sensory information may perseverate or stick around repeating itself long after the event has passed.

Here are a few examples from my lived experience:

  • People’s faces look distorted when I’m walking around a crowded shopping centre. Like their facial features are melting.
  • I can still hear the school bell in my ears and feel the horrible sensation in my body at 6pm, even though it went off to signal the end of the school day at 3.30pm.
  • Synaesthesia – I see musical chords as colours, and numbers as coloured shapes. Always.
  • When I am very upset or have had a shock (e.g. the death of a family member), I don’t feel sad but my vision gets patchy and I can’t see my fingers when I am trying to use my phone. I might “feel” sad months later. This can be misinterpreted as me not letting things go – when in fact, I am only just feeling them.
  • If I am overwhelmed, I feel seasick when walking and cannot bear to slow down, speed up, or change direction as I feel I may vomit.
  • I hear “echoes” of previous conversations replaying out loud when I sit quietly.
  • I cannot tell where my body ends because my proprioception is so muted. I may unknowingly invade other people’s personal space or fail to recognise my own body in the mirror.
  • I hear my thoughts and they seem to become “out loud” rather than inside my head.
  • I feel edgy, suspicious and on high alert.
  • I want intense pressure, and even pain. My body craves intense and extreme physical input. This can be misunderstood as me being reckless.

When there is far too much or far too little sensory input to register with our brains, we become dysregulated.

How we up and down regulate ourselves will depend on our own personal sensory profile – and whatever else is going on for us at the time. As an autistic person, I often find that there are fewer opportunities to regulate myself in daily life, due to my natural sensory differences. If I enter a busy shopping centre, my brain finds there is way too much of everything and I could easily become overwhelmed. If I instinctively regulate myself by stretching, or bouncing up and down, or by humming a noise that drowns out some of the unpredictable background noises, I may be at risk of being asked to leave due to my inappropriate behaviour. Read more about this in my blog ‘ Autistic traits: when self-care gets pathologised ‘.

Sensory or Psychosis?

Some of the descriptions of my lived experience may sound like hallucinations or symptoms of psychosis, and for many years my undiagnosed autism was treated as mental illness.

Things get tricky when we try and unpick what is going on for autistic people who are distressed. It is known that autistic people are more likely to experience mental illness than our non-autistic peers. It hardly seems surprising when the world we experience is often more painful and extreme due to our sensory processing differences. It is also unsurprising when we consider how our lived experience is often invalidated with comments about us “overreacting” to things other people aren’t even aware of.

Learn about Sensory Trauma www.autismwellbeing.org.uk/sensory-trauma

If we have seen ourselves as mentally ill and our sensory experiences as symptoms of psychosis then we may perceive ourselves to be deteriorating or experiencing a relapse when we are experiencing sensory overload. Of course, autistic people can be mentally ill and experience relapses and those of us who have support in place to manage those times should always seek input from the people we trust to help us with our wellbeing. My story of mental illness was one of feeling like I lacked resilience and couldn’t cope, because when the going got tough, my senses got going! For me, an increase in sensory processing disturbances would usually result in an increase in antipsychotic medication. However, whilst medication dampened down some of my distressing sensory experiences, it also dampened my joy.

For anyone reading this who is beginning to question their own mental health and medication, I urge you to talk things through with someone else before considering changing your treatment. I did gradually change my treatment, but only once I had found a reliable way of managing my wellbeing effectively. I still use medication for my mental health, but I am also incredibly proactive in keeping myself regulated.

Managing urges to self-harm

Self-harm was a daily part of my life for many years. It is not something I have done for a long time and it is thankfully, something I rarely crave anymore. There are times where the urge is still there, but I no longer feel bad about having those urges. It is unsurprising that I have cravings when it was my “go to” for so long in the past. Just like any other craving or urge, I use it as cue to give my body what it needs.

If I feel thirsty, I use it as a cue to have a drink. I have the choice as to whether that drink is a cup of tea, a glass of water, or 5 pints of beer!

If my legs feel restless, I use it as a cue to go for a walk. I might have a gentle stroll, a 5 mile hike, or a jog round the block.

If I feel tired, I might have an early night – or I might not! The choice is mine.

Sensory processing is what we use to identify what is going on within and around us – and how we respond to it.

When I feel the urge to harm myself, I use it as a cue to increase my proprioceptive input. Proprioception is my “go to” sense when I am craving intense physical input. Proprioceptive input helps us feel safe – that’s why we might enjoy a hug, or squishing our body into a tight space, or wearing snug fitting clothes or doing up our shoes extra-tight so we get a good sense of where our body is. Clinicians often hypothesise over why people self-harm. They quote people as “managing intense emotions” or “a cry for help” or “punishing themselves”. These may well be factors and like many human experiences, there is rarely a single explanation, but no-one has ever described self-harm to me as being due to “needing a big dose of proprioceptive input to make me feel safer”. But for me, and many of the people I have supported in my professional career, some of our self-harm is a very human, very natural craving for proprioceptive input – which makes a lot of sense when you consider our sensory differences.

Proprioception comes from the Latin meaning ‘to know oneself’. That is exactly what this sense does. It gives us a sense of where our body is and where our limbs are in relation to each other.
The proprioceptive signals are sent from our muscle spindles, ligaments and joints up to the brain to be processed. For many of us who are autistic these signals can be ‘weaker’ or ‘blurry’ which can leave us feeling like we have an unclear sense of where our body is.

Humans are complex and our coping mechanisms are complex. Understanding how we respond to distressing situations, whether sensory or otherwise, requires us to be nuanced in our considerations, and a short blog like this one is not able to unpack this level of complexity. My aim was to share how my own responses to distressing life experiences are always impacted by my autism and sensory differences. Identifying which experiences are mental health symptoms and which are not, isn’t always relevant. Being able to regulate myself is what is important. Being regulated helps with wellbeing, whatever the cause of the distress.

Proactive regulation

Proactive Regulation is a term Autism Wellbeing UK uses to describe how we can make sure we regulate our senses and emotions throughout the day so that we can function at our best.

For us, this might include wearing headphones in a busy shop, or carrying a scented inhaler tube to smell to help us feel grounded.

Proactive regulation also means showing ourselves self-compassion where possible, by avoiding or delaying activities that are likely to dysregulate us rather than pushing on regardless. Turning the habit of self-harm into a habit of self-compassion has been as time- and energy-consuming as making or breaking any other habit. BUT…

It has got easier the more I have done it. At first it was about “doing” rather than “feeling”. My brain and body craved intensity and pain and I had to push that to one side while I was compassionate towards myself. At first it felt unnatural, clunky, ridiculous and fake!

Me doing my self-care when it was new to me!!!

Mostly, when I feel distressed these days, I automatically see it as a cue to do some self-care, show myself compassion, and regulate myself. I even feel able to reach out to others that I trust. Here are some infographics about proactive regulation. It is important to be regulated before you need to be, in fact you can stockpile regulating sensory input for later. Just as I described feeling the distressing effects of the school bell hours later, or hearing “echoes” of previous conversations in my quiet moments, I can feel the positive effects of regulating input hours later too. Proactive regulation has been a game changer for me.

Thank you for reading this blog. I was unsure about whether to add trigger warnings as what triggers each of us may be different. Even trigger warnings can be triggering! This blog is one of positive change and hope. If you need help with difficult and distressing feelings raised by this blog, please reach out to someone or contact the Samaritans or other organisations.

Categories
5 minute read Autism Coronavirus interoception Uncategorized

An Autistic experience of the impact of Covid-19 infection on sensory processing

Background:

I contracted Covid-19 for the first time in April 2020. This required a hospital visit which led to my interest in developing resources to support other Autistic people and their families as part of my professional work as a director of Autism Wellbeing CIC.

I received my two doses of the Covid vaccine during the summer of 2021 and was unfortunate to become infected with Covid-19 for a second time in October 2021. My symptoms of early illness did not present in the expected way.

My most recent Covid-19 infection initially resulted in the common symptom of complete loss of my sense of taste and smell. I have regained about 5% of my olfactory and gustatory processing ability six weeks on from infection.

My professional career has been within social care – developing and delivering services to people who are labelled as having complex needs. My own experience of Covid-19 enabled me to reflect upon some of the potential impacts this could have on other Autistic people, and in particular those who use non-verbal communication or are considered to have “challenging behaviour”.

Interoception – knowing I am ill:

Prior to both infections with Covid-19 I noticed a complete change in my demeanour. I did not feel ill. I did not feel hot or cold – although a thermometer indicated I had a fever. I experienced the sudden onset of severe depression-like symptoms. Fortunately, I am aware of how my interoceptive processing experiences manifest. Interoception is the sense we use to process internal body signals such as pain, hunger, or needing the toilet – and to notice our emotions and the changes they are creating in our bodies (racing heart could mean excitement or anger for instance).

The severity of the depression-like symptoms frequently overshadows my attempts to seek medical help for my physical illness. When I seek medical intervention at these times, my physical illness is typically overlooked, and my mental health is scrutinised – despite me articulately and accurately informing medics that I believe I am coming down with a physical illness. This overshadowing of my physical illness due to putting greater emphasis on the risk management or identification of my depression-like symptoms may prolong my illness as my physical health problems are not treated.  It invalidates my experiences and may even create barriers to me seeking support or communicating with medics.

When I consider people I have supported professionally, that are labelled as having “challenging behaviour”, I recognise occasions where perhaps they too may have experienced a sudden change in mood due to a physical illness. Within my work I have observed people exhibiting behaviours such as shouting; biting themselves or others; or running away. These behaviours were considered to be caused by the person trying to communicate that something was wrong and as practitioners we would consider whether this could be something external such as too much noise or the person not wanting an activity to end, for example; or something internal such as toothache or illness.

At times, “challenging behaviour” was interpreted by some practitioners as having an element of intent or wilfulness on the part of the Autistic person. It was sometimes considered that the person didn’t know how to communicate “properly” using speech or sign language or had poor social skills – and therefore chose to demonstrate their pain/distress/urge to leave, by “acting out” and using their behaviour in a planned or possibly even manipulative way to communicate with others.

Where no cause or trigger was obvious to the (usually non-autistic) observer, it was common for the observer to conclude that the person was over-reacting or hyper-responding in some way, and subsequently needed to learn more appropriate coping strategies. My own symptoms of sudden severe depression could look like emotional instability to an observer, and they may well consider me unable to cope with being ill. They may misconstrue that my mood symptoms are a response to my physical illness and not the way that illness manifests for me.

Sensory Processing:

Thank you to my colleague Kate for the drawings http://www.autismwellbeing.org.uk

Sensory processing is the process by which the nervous system receives, organises, and understands sensory information. All of us experience the world through our senses and our brains process this information.

Autistic people frequently process sensory information differently to non-autistic people. Our sense receptors (eyes, ears, taste buds and so on) may work perfectly well but there may be differences in the way our brain processes the sensory information.  This may include struggling to process too much sensory information or filter out unnecessary information; experiencing heightened, muted, or distorted sensory signals; delays in processing; or perception in one or more senses shutting down, resulting in an incomplete picture of what is happening within the body.

Each of us has a unique sensory profile. But sensory processing does not happen in isolation. Our sensory experiences change and can appear inconsistent to others who do not recognise the dynamic and context specific nature of sensory processing.

Our senses play an essential role in keeping us safe. For example, if food smells rancid, we know not to eat it, and if we feel unstable on a structure, we climb down from it. Sensory information tells us how to act in and adapt to the environment. Sensory processing also plays a role in regulation, activating us to evade a threat or calming us so that we feel safe.

Positive and negative aspects of my loss of taste and smell:

  • My overall amount of sensory processing was dramatically reduced. This had a calming and regulating effect upon me and reduced distress in some situations. e.g. the lack of diesel fumes and burger van smells made visits to my local town more bearable.
  • Food never tasted “off”. This reduced the anxiety I typically experience when food tastes different to usual. I used the best before date to identify whether something was safe to eat.
  • Food tasted of nothing – so texture became more intense. I realised that I could never eat broccoli without the “reward” of the taste of it to compensate for the texture!
  • I have practiced mindfulness for decades and found that eating mindfully was the best way to cope with my sudden loss of taste. I would put the food on my tongue and notice it without judgment. At first, the only food I could identify in my mouth was mango, due to the distinctive fizz. I am now aware of spices, bitterness, and the saltiness of marmite.
  • I recognised how I rely on my sense of smell when cooking. It lets me know when to check if the toast needs turning over under the grill and if food is getting close to being cooked. Without the ability to smell my food cooking, I had to focus on following safe cooking procedures and use a timer or else risk burning food.
  • Smell keeps you safe – I no longer felt disgust at cleaning up pet poo, even if I accidentally got some on me! I didn’t automatically recoil from mess or take extra care using bleach or filling the car with petrol as there was no aroma from it and it could have been water as far as I was concerned.
  • I can no longer smell the weather and therefore cannot easily identify whether I should wear a jumper or coat. My sense of smell is more effective than my awareness of temperature when processing the environment.
  • I use my sense of smell to recognise people. Their sudden lack of aroma made them as difficult to recognise as a radical new haircut or significant weight change would. This created a sense of unease within me.
  • I am concerned that I may smell bad, or my home may smell bad.
  • I am aware that I would not smell burning so have become extra vigilant about checking things are switched off at night. I recognise that this vigilance could become anxiety, perseveration, and obsession, so I have adopted a sensible routine to manage my safety concerns without escalating them.

Conclusions:

My sensory experiences following Covid-19 infection have reminded me how our senses work together and not individually.

The role of our senses in keeping us safe is significant. Risk taking may not always be due to recklessness, impulsivity, or lack of understanding of risks – it could occur due to sensory differences.

Autistic people may experience the world in a disorganised or chaotic way because our senses work so differently. My typical need for routine and structure reflects this. Since Covid-19 infection, I am aware that I am relying even more than usual on timers, reminders, and routines in order to compensate for my loss of certain senses. To an observer, Covid-19 may appear to have made me “more” Autistic. It hasn’t; but my “normal for me” world has changed, and I am needing to find security, certainty, and predictability in this new world of minimal smell and taste.

If I was supporting an Autistic person who was not able to articulate their experiences, and they had recently tested positive for Covid-19, I would consider how their sensory processing may have been affected. It would not surprise me if some Autistic people needed to increasingly rely on their other senses to make sense of the world if their sense of smell and taste reduced. They may touch things more to identify them using their tactile sense. They may stim more in order to get extra vestibular and proprioceptive input. I’d expect to see more tasting and smelling of items and people; and possibly increased frustration at not being able to recognise them by these methods.

I would also expect to see an increase in repetitive questioning by some Autistic people. I too have a felt a need to check and recheck information in order to seek out familiarity and predictability. I have found satisfaction in the predictable to-and-fro of scripted or familiar conversations and exchanges. Those reliable quotes from films and songs that stay the same each time you hear them! Similarly, I would not be surprised to see people stuck in a loop of thinking, or stimming, or behaving in a particular way – these tendencies are often exacerbated by change and unpredictability and can provide predictability and a self-soothing function.

Moving forwards, I have prepared myself for a potential return of my sense of taste and smell. I am aware that just like the effects of the various lockdowns ending; a sudden increase of sensory information may be too much for my brain to process and result in survival responses of fight, flight or freeze. I plan to stick with my mindful approach to noticing what my senses are picking up, with no judgment and a curiosity that will hopefully enable me to reflect and share my insights.

I encourage practitioners to consider sensory processing experiences when supporting Autistic people whose behaviour suddenly changes from what is usual for them, and perhaps check whether Covid-19 infection and symptoms related to loss of smell and taste may be the cause.

Categories
Autism interoception wellbeing

Saying “ouch!” in all the wrong places …

Ouch!

I do feel things you know! I may have hiked several miles along the Welsh coast path – and back again – to see if I could “walk off” my dislocated knee. I may have been “incredibly strong and brave” during labour and breathed through my contractions without a cry passing my lips. And I even spent a week away at a children’s camp aged 11, with a broken arm that everyone thought was “nothing to worry about” because whilst I told them I was injured, no one took me seriously because I just wasn’t saying ouch in the right places. I was still hurting though.

Conversely, I can also stress about sensations on my skin that doctors can find no evidence for; and feel so unwell before a thunderstorm I want to curl up in a ball and hide away. More than once I have visited the doctor with physical symptoms only to be told there is nothing wrong with me.

Just because I don’t “feel” pain in a conventional way, doesn’t mean I am braver, weaker, stronger, or more sensitive than other people. When I am unwell or injured my symptoms may not even be experienced as pain – frequently my mood and emotions let me know that something physical is going on. However, when I am distressed or emotional, these feelings may be experienced as physical pain – or more commonly as sensory processing disturbances. Changes to my vision or vestibular processing for instance.

I can’t explain how this works but I accept it in exactly the way I accept my other sensory processing differences. Synaesthesia is widely documented and believed as a variation on human experience. I experience some music and colours in this way myself. I put my unusual experiences of pain, illness and emotions down to a similar phenomena.

I have learned to trust my own experience of my body rather than that of medics and interpret my symptoms accordingly. Unfortunately I am rarely believed. I therefore have a dilemma: do I continue to say ouch in the wrong places – and be viewed as a hypochondriac and dismissed as having nothing wrong. Or do I tell the truth and describe my symptoms honestly and inform the doctor of what the symptoms are most likely indicating – leaving myself open to being viewed as delusional. This is a very likely outcome of me sharing my symptoms truthfully with doctors, because I have a psychiatric history. Or do I lie and try to use the words and terms they’d understand – for example, I could pretend that I was feeling the pain of my injury far more severely than I was. This isn’t an option for me – I can’t justify lying in this situation.

Or do I avoid seeking treatment for any physical or mental health issues I may be having? Do I join the many other autistic people who have poor health outcomes, just because my atypical experiences are not believed – despite me clearly being lucid, articulate and reasonable. Goodness knows how people who are less confident and articulate cope!

Caring for someone else who says ouch in the wrong places…

For a long time I assumed I was either totally unfeeling – or totally oversensitive. I also believed a lot of lies I had told myself or believed from others. Sometimes I assumed I was somehow stronger and better than other people who appeared so weak and lacking in emotional strength to me – those people who got sentimental about things, or lost their tempers, or got flustered in a crisis. At other times I felt weak and pathetic, and the worse human being on the planet because I couldn’t cope with the little things that didn’t bother other people, or I’d know something was wrong with me, but no one would believe me. Perhaps I was mentally ill; perhaps so damaged I was beyond repair? A fraud; an alien; evil. I had a perfectly logical reasoning for each of these potential explanations based on comparing myself to others and believing the lies I told myself or others told me. Of course, none of these were true.

Then I had a child. And there was suddenly another human who was perfect, untainted by the world, definitely not an alien or evil – but very much like me. Once I had spent a very long time coming to the conclusion that I hadn’t damaged him in some way, we sought clinical input on his differences – those differences that were very similar to my differences. And we learned amongst other things that he is autistic.

It didn’t take long to realise that I am autistic too.

Our son has better health outcomes because we understand that not everybody experiences things in the same way. All of us process sensory information in individual ways. Whilst there is a typical range of sensory experiences, most people have experienced unusual sensory processing at some point and can relate to the experiences that many autistic people have everyday. Most of us will relate to how our hearing becomes acutely sensitive when we are scared and even the quietest noise can startle us with how loud it sounds; or the feeling of “sea legs” when we have come ashore after being on a boat and our brain is telling our limbs that everything is still moving.

Autistic people may experience these extreme types of sensory processing experience as our “normal”. We may process the world in a muted way where sounds, lights and smells barely register with us – or we may experience sounds, lights and smells as intense or even painful sensations. Most of us experience a mixture of these variations – and they may fluctuate depending on what else is going on; our environment, mood and general wellbeing etc.

Knowing how we feel physically and emotionally is determined by our sensory processing system. The sense that really plays a part in knowing when to say “ouch” is interoception. Our interoceptive processing system enables us to recognise body signals like being hungry, tired, needing the toilet, pain and emotions. Just like the other senses it can work within a fairly typical range – or it can be muted or intense – and remember this can vary for each of us on a day to day basis too. Have you have ever not noticed you need the loo until the last moment because you have been so engrossed in what you are doing you haven’t recognised the signal in your body? Or known something was up but you couldn’t work out what? Or realised you were tired or hungry. That’s interoception.

Learning about interoception has taught me an important life lesson. Compassion. And also self-compassion. I am no better or stronger than anyone else just because I don’t feel pain from injuries unless they are very serious. Nor am I a pathetic loser because the sensation created in my body by needing to wait for something is so intense it makes me feel edgy, uncomfortable and completely unable to shift my focus onto anything else. I may not feel love for other people as a sensation, but I absolutely love them with all my (very logical!) heart.

And just because other people may not take my experiences seriously doesn’t mean I should disregard those experiences.

All human beings have basic needs – warmth, safety, food, love and so on. When we look after other people we need to meet these needs, regardless of whether the person we are caring for is aware of the need. A baby cries so we check out whether they need feeding, changing or a cuddle. If our child doesn’t notice they need a drink, we still give them one – to do otherwise would be neglectful. Our child may not notice they have bruised themselves falling over – but we still check them out for injuries and treat them with care. A child that may not be feeling an emotion we might call “love” or who may not turn to us for comfort when they are upset, still needs to be shown love and comfort – even if this is on their terms rather than our own. Perhaps this isn’t through cuddles and praise, maybe it’s through listening to them talk about their favourite interest or letting them press their feet into your tummy while they play on their own with a toy – different sensory processing systems require different responses.

Having a child made me appreciate the disservice I was doing myself by viewing my experience of interoception with a judgmental attitude. It’s not surprising – emotions are what makes humans most human. If I asked you to describe a robot, it would probably look human and have all the various sense organs that humans have and do very humanlike things, but lack emotions. My unusual auditory experiences for example, are much more accepted than my unusual interoceptive experiences. Ultrasensitive hearing, the ability to smell someone in the next room, or instantly spot a typing error on a printed page are unlikely to result in judgmental labels such as ‘evil’ or ’emotionally unstable’. A lack of typical emotions seems to equate to an almost robot-like lack of being human. And in my experience it is easier for people to treat others badly if they don’t view them as human.

I need to treat myself with the same compassion that I treat other people. Extend my willingness to meet other people’s needs in unconventional ways with meeting my own needs in unconventional ways when I need to.

Soothing my own “ouches”

Once I had accepted that I wasn’t in fact evil, damaged, an alien or any of the other explanations I gave for my undiagnosed autism, I set about understanding how I actually process the world. It’s been a tough journey, but thankfully is getting easier.

Resilience is often discussed within mental health. Fortunately we can learn to become more resilient and this is all the easier when we explore this from an autistic rather than neurotypical point of view. A person whose experience of sensory processing is one of Sensory Trauma and constant invalidation from clinicians is severely disadvantaged. But many autistic people are fantastically resilient by the sheer fact they are functioning in a world that is biased towards the majority of people who are not autistic. We also tend to be able to self soothe by using our bodies and senses to regulate ourselves – this may be through our intense interests, our repetitive movements, or our ability to follow routines. Sadly these strategies that promote autistic resilience can be seen as part of the medical model disorder of autism. Fortunately autistic voices are getting stronger and society is recognising the social model of disability and the unique strengths that autistic people possess.

But it still hurts!

At this moment I have little faith in the medical system. I continue to say ouch in the wrong places because that is how my sensory processing system works. It is not broken so cannot be fixed. I have always been like this and always will be. I refuse to lie and pretend and say ouch in the “right” places.

The world needs to change. I am unable to receive the treatment I require for physical or mental health issues because I cannot articulate them in the accepted language of clinicians. I prefer to avoid seeking help because of past experiences of being mislabelled and badly treated. Although my autism has now been correctly diagnosed, it was overshadowed for many years and those past labels will always be there.

It is unlikely that in my lifetime I will be able to say ouch when I hurt, and describe my physical and emotional experiences in my own genuine way and be listened to and accepted. What a shame – and how shockingly bad that is for a society that sees itself as modern and inclusive.

There are no easy answers – I keep chipping away at the system when I have the energy – and keep showing myself compassion and self-care. If this blog resonates with your own experience or you wish to share it to spread the message further, then please go ahead and share.

Interoception is the sense most recently added to the five senses I was taught about at school, plus the two others added more recently. Learning more about this eighth sense could make a big difference to many people’s lives. Understanding that we each have different levels and ways of feeling things is as significant as realising we each hear and see things differently. We need interoception to be considered alongside all the other senses – and without judgment.