Tag: sensory joy

Categories
Autism

When sensory experiences don’t make sense!

Can my sensory differences really feel like this? This blog explores some of the interesting, terrifying, joyful, stim-tastic, and plain strange, ways that humans – especially autistic humans – can experience the world through our sense systems.

The medical language about autism uses words like disorder, abnormal and atypical, and suggest that there is one, standard sensory processing norm from which Autistic people deviate. This is not the case. Each of us, Autistic and non-autistic alike, has our own individual way of processing sensory information.

How does our sensory processing system work?

Each and every one of us experience the world through our senses. Sensory processing is the process by which the nervous system receives, organizes and interprets sensory information. Sensory processing helps us figure out how to respond to environmental demands based on the sensory information available to us. As humans, we are constantly picking up sensory information from our environment via our sense receptors. As part of this subconscious process, our brains filter out sensory information that is safe to ignore so that it can focus on information important to tune in to. We also process sensory signals arising from within our body that help us to know how we are feeling, where our body is in space and the effect of gravity on our body.

Some examples of this include:

  • If I see a light that is very bright, I look away or shield my eyes.
  • When I open my refrigerator and smell the opened bottle of milk, I can tell if it is fresh enough to drink, or if the smell makes me gag, I pout it away.
  • If I climb up onto a step ladder and feel unstable, I climb back down.
  • When I notice that I need the toilet, I use the bathroom.
  • When my favourite song comes on the radio, I get a feeling of warmth in my body and I can’t help but move my body to the beat.

Being able to use sensory information in this way helps keep us safe; helps meet our body’s needs – eating, drinking, using the toilet etc; and tells us how we feel about things.

Survival Responses

When we feel threatened – when our brain perceives a threat in the environment – we instinctively take action in response to that threat. Our three main survival responses are fight, flight or freeze. Sometimes, when we are feeling regulated and in a safe place, we may be able to override these survival responses and cognitively weigh up the extent to which we are actually threatened.

Sensory Trauma

On account of our sensory differences, Autistic people may live our daily lives in a state of heightened stress and anxiety, many of us experiencing Sensory Trauma. Sensory Trauma may arise from painful and distressing sensory experiences. For many of us, these painful or distressing sensory experiences are associated with activities that are typically part of normal
everyday life. We may then face the additional trauma of not being believed, being mislabelled as over-reacting or attention seeking and even in some cases (mis)diagnosed as mentally ill.

The invalidation I experienced growing up consisted of messages along the lines of “Nobody else is complaining about the noise hurting their ears, you always have to make a fuss” or statements starting with “The trouble with you is….”. This, along with the painful sensory experiences that accompanied my daily life, eroded what limited sense of agency and self-esteem I had, and made me question my reality. My identity was already shaky due to the muted way I experienced awareness of where my body was in space and the muted sense of how I felt about people, situations and myself. I knew that I experienced the world differently to most people – and the messages I received about that, were that I was wrong! I became engulfed in shame.

If you’d like to read some examples of Autistic people’s sensory experiences, Autism Wellbeing’s free downloadable booklet, Autism: A Guide for Parents offers further insights, and is a piece of work myself and my colleagues created with the testimony of Autistic adults. You will find the booklet on our free downloads page.

https://www.autismwellbeing.org.uk/resources

As Sensory Trauma and the potential for Sensory Trauma are ever-present over the course of our days, as Autistic people, we may spend our waking hours constantly on edge, hypervigilant and at risk of tipping over at any time into one of the three survival responses. The longer we live in a state of heightened anxiety, the more our nervous system becomes used to functioning in that mode or on that “setting”. We may become habituated to being on the look-out for the next potentially distressing sensory experience.

If you’d like a more in-depth read about autism language, sensory processing and Sensory Trauma, take a look at our work.

http://www.autismwellbeing.org.uk/sensory-trauma
Buy the book (free on Kindle Unlimited)
Sensory Profiles

Each of us has sensations that we like or are able to tolerate, as well as some we do not like and find difficult to tolerate. Many Autistic people process sensory information differently to our non-autistic peers. For 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 incoming sensory information.

The two most well known sensory processing differences are due to experiencing sensory input in a heightened or muted way. My brain usually processes auditory information in a heightened way. This means I only need a relatively small amount of noise to register with my brain, and loud noises are processed as painfully loud. Whereas I need lots of proprioceptive input before I notice what my arms and legs are up to, on account of my muted proprioception. This means I tend to use too much force and appear heavy handed or clumsy. One of my earlier blogs explores sensory processing in more depth.

Sensory processing does not happen in isolation, it is not just about our ability to process that particular piece or kind of sensory information. Sensory processing is dynamic and highly context specific – it is about how we experience a specific sensation, at that particular time (in light of what has come before and anticipation of what may come next), in that particular environment, in the company of those particular people, whilst in that particular emotional state.

Sensory Modulation

Sensory modulation is an ongoing process – it’s how our brain fine tunes incoming and internal sensory signals so as to make sure we are in a state of balance where our capabilities are open to us to use. Sensory information is constantly being registered in the brain and sensory modulation continuously makes adjustments to help us function, learn and connect with others optimally. Being in this optimal state means feeling calm and alert, being open to new experiences and available for intellectual challenge, social interaction and emotional connection.


For people who have developed in a so-called typical or expected way, sensory modulation goes on all the time, ticking along subconsciously in the background. For those of us who are Autistic, (or have experienced trauma), the process is not always so smooth and many of us have developed idiosyncratic ways of being in the world that support our sensory regulation. The things we do as Autistic people to help us become regulated, may not be things that other people would ever do. We often develop highly effective sensory strategies that help us become regulated – but these strategies may be pathologised by others. This blog about the pathologisation of self-care contains my thoughts on this.

Examples of sensory strategies that Autistic people may use to regulate themself might include rocking, head banging, flapping, jumping, spinning or hitting objects. Repetitive sequences of activities and sorting things into categories may also be part of our self-regulating strategies. Autistic people engage in such sensory activities in an attempt to help us feel
embodied and safe.

Our brain’s information filter

Human brains have evolved to continuously filter out sensory information in our environment to which we do not need to attend, for example
the sound of the fridge humming or the whirr of the computer.
Sometimes, Autistic people are unable to filter out certain sensations and we may experience all sensory information in our environment with equal intensity. Conversely, we might be an Autistic person whose sensory “filter” may be so effective that it filters out too much information
and we might appear disconnected from the world around us. For some Autistic people, these sensory processing differences may vary both within and across sense systems. In addition, sensory processing differences may depend on the setting as well as our emotional state. For instance, when my wellbeing is optimal I can cope with background noise when I am working, but when I am stressed or in an unfamiliar environment, any noise can feel too much. Like many experiences in life, this variability is common across all people, Autistic and non-autistic alike. We may all have “off” days, or be unwell, overworked or under pressure, and our sensory experiences will likely be affected by these states.

Distortion, Fragmentation and Delay – This is where sensory processing gets weird!

For some Autistic people, sensory signals may become distorted as they are processed in our brains. For example, when I become stressed or overloaded, my capacity to perceive dimensional depth can diminish with the result that my environment may appear flattened and two-dimensional. Once familiar places look the “wrong” size and faces seem to distort and rearrange themselves like a surrealist painting. Some Autistic people report losing the capacity to identify or distinguish between their interoceptive sensations. Again, this capacity is often a shared human experience – many people report feeling “hangry” – a feeling of anger or irritability when hungry.

Sometimes Autistic people may be able to see a part of their body but not feel it. Whole sense systems may shut down as processing of incoming sensory information becomes too much for the brain to manage.
Delays in processing sensation may occur because the sensory information takes time to register in and be processed by the brain. This can often be clearly seen in Autistic children who experience delay in processing pain signals, with the result that they may react to an injury and its associated pain minutes or even hours after the injury occurred. My experience of pain tends to be muted. I have tried to walk off a dislocated knee! My blog about “saying ouch in all the wrong places” describes my unusual interoceptive processing in more detail. I am more able to place my pain when I have support to understand where it emanates from – a year of GP visits about earache with no evidence of infection, followed by dental appointments and an oral X-ray, showed I had an untreated abscess in my jaw. Upon seeing the X-ray image, I felt the pain in my jaw in the right place, rather than as a general feeling of “I’m not ok, I think its to do with my head but I’m not sure”.

“My fingers aren’t there! I’m sat scrolling through my newsfeed on social media, trying to tap on a message to open it and my fingers have disappeared. I can read the screen of my phone but there are blank, blurry patches where my fingers should be. I move them – or do I? I can’t see them and I’m never quite sure, when I can’t see bits of my body, whether I can actually move them or not.
I slowly move my phone around and realise that I have tunnel vision with a ring of pixelated, almost kaleidoscopic vision around it. If I move my head, I can fix what I am looking at into the centre of my vision so that I can see
it. This isn’t right, but I feel OK. I quickly scan through my body: head – OK, no pain, no dizziness; limbs – OK, no pain, they can move; body – my heart isn’t doing anything unusual, no pain or fluttering or sickness from my tummy. I can think normally; I’m not worrying; I’m not
preoccupied; I’m just going about my business as usual and this has happened. This visual disturbance lasted for a few minutes and then disappeared as suddenly as it came. It happened a few times over the next few days….
My dad died the day before I experienced this visual disturbance for the first time” (from Good Autism Practice Journal, May 2020)

Perseveration – where sensory processing gets even weirder!

This short film from National Autistic Society shows the phenomenon of perseveration.

Before I understood that I was Autistic, I firmly believed that there was something seriously wrong with me. A school bell bringing the day to a close and piercing my ears and body with pain, would still be looping round my brain and body hours later – just as painfully. Conversations and images from last week would be on continuous autoplay in my mind and jolt me awake as I was about to drop off to sleep. Situations that involved lots of information and sensory input to be processed were the most likely culprits of these invasive and intrusive sensory experiences. It is as if my brain and body are an airport and all the sensory and cognitive input are aeroplanes that land on the runways and take their place neatly in the various hangars. Only, if there is too much input, these planes have to stack up and keep circling until the runways are cleared. A simple way for people to help reduce this is to give me enough time to process series of instructions, particularly when they are being given to me in environments that have the potential to overwhelm me.

My Secret Weapon

Perseveration can be painful, distressing and overwhelming. It can also be my secret weapon!

This is because it is not only the painful and distressing sensory input that gets stuck in my body. Positive sensations can too. I have a good life on the whole. Proactively keeping myself regulated enables me to be at my best for trying new things and coping with the unpredictability of life. Just as certain sensory input has the potential to be traumatising, there are other types of sensory input that bring me joy. There are further types of sensory input that are regulating and if I give myself little top ups of this input throughout the day, I can remain in an optimal state and have increased resilience. Each of us will have our unique preferences for regulating sensory input, and for me, the types of input that perseverate most effectively include listening to music with lots of bass (so I can feel it throughout my body and not just in my ears), glissandos (a musical term for when one note glides into another – Led Zeppelin’s Whole Lotta Love, Gershwin’s opening bars to Rhapsody in Blue, and loads of Pink Floyd tracks use glissandos), weight training and stretching, weighted blankets and bear hugs. Proprioceptive input seems to be particularly effective at perseverating in a positive way.

I hope this blog has provided some knowledge and reassurance to those who are scared, confused or overwhelmed by their sensory experiences. Why not read some of the blogs and information I’ve provided links to and explore how you can use sensory input to become and remain regulated…

And never stop seeking those sensations that stick around in a positive way, or that bring you joy!

Categories
Autism wellbeing

Autism and Self-Care

In the same way that we show kindness and compassion towards others, it is important that we show ourselves kindness and compassion too.

During times of stress, or when we are feeling fragile, struggling, or overwhelmed, it can be easy to give ourselves a hard time, or tell ourselves to toughen up. I often feel that society tells us time and time again to “just try harder”. And time and time again, I keep doing more of that thing that wasn’t working for me – but even more so! I don’t have enough hours in the day to fit everything in, so I stay up later. I don’t have enough energy to even take a shower, but I’ll sort out washing my son’s mountain bike. I keep going, holding on to the false belief that it will somehow make me stronger and better able to cope.

However, resilience isn’t built by doing the thing that hurts you even more so that you get used to it! All that does is teach you to put up with harmful things you should actually be avoiding.

Like many autistic people, I experience sensory information like sound and smells in a different way to many typical people. Some autistic people have difficulties processing how we feel – our sense of interoception may be muted, or alternatively, over-responsive and we can feel bodily sensations (hunger, needing the toilet etc.) and emotions in a less or more intense way than other people do.

I am an ‘under-feeler’. I often don’t know what it is I feel – I’m sure there is something going on but I can’t say what or where. On an off day, if I am lucky I have a general sense of ‘meh-ness’ or that life is ‘probably not ok’. When other sensory input is bombarding me, my interoception weakens further.

Many of my senses are affected in a slightly bizarre looking way. My visual processing can go haywire and I lose chunks of my vision because it’s too noisy. Or something very upsetting happens, and rather than feel sad, I feel seasick when I change my walking pace or direction. The issue is with my neurology, my brain is processing sensory information differently. It is not an issue with any of my sense organs.

All of us experience the world through our senses. This includes how we see, hear, smell, taste and touch the world – as well as how we know where our bodies are and how they are feeling. To function at our best, we need to be in what is sometimes referred to as the “just right state”. This means that our brains and nervous systems can receive, organise and understand sensory input and respond to it in a regulated way.

We all need different amounts of input at different times. Many autistic people need more sensory information or less sensory information than other people typically do in order to become, or stay regulated. Emotional and sensory regulation is about doing what we need to do to get the balance just right. For me, this is the fundamental principle of self-care. Unless I’m in an ok place to start with, there is no point attempting any more sophisticated self-care techniques. The fantastic thing is most of what we can do to regulate ourselves is very straightforward.

If we feel hyped-up or over-stimulated, we may need to calm ourselves. If we are feeling lethargic, flat, or floppy, we may need to do something energising. Regulating ourselves is part of our daily lives for most people and often we don’t even notice we are doing it. If I need to do something a bit nerve wracking I’ll instinctively take a deep breath first. If I need to unwind after a busy day, it feels natural to run a warm bath with some of my favourite scented bath oils. When I want a pick me up, I’ll enjoy the stimulating effect of inhaling the aroma of my mid-morning cup of coffee.

We are also quite natural at co-regulation too. This is when we help each other regulate ourselves. As parents we are often attuned to our children’s needs – I may recognise my son’s distress before he does and act in ways that helps him to regulate himself – whether that’s a hug, or a warm drink, or a wrestle.

I firmly believe that self-care is a disposition rather than a technique or approach that can be got out and used when required. It’s an attitude and a way of living. However, I haven’t always taken good care of myself. I learned the hard way and I struggled for years and used all sorts of unhelpful and harmful ways to regulate myself and cope with the inevitable stresses and strains of life.

As an autistic person I experience the sensory processing issues I described above. I also experience some of the other common experiences that autistic people have:

  • My world feels chaotic and confusing as my processing of it fluctuates daily; depending on the environment, my health, the weather, my mood and how much I have going on.
  • I seek consistency and order so that I have something solid to anchor myself to. Frequently I find the neurotypically biased world we live in doesn’t understand or offer me this stability, so I have to create my own.
  • I seek clarity through using logic and by taking things literally – I expect my honesty to be replicated in others – sadly that may not be the case!
  • My brain is always consciously working out what to do. It can be tricky to pack any more processing into it. It’s easier to rely on learned routines, set pieces, and organisation.
  • My body is always waiting for the next bombardment of sensory pain. If I shut it off I have to stop relating to everyone and everything. If I stay alert, I risk getting hurt.
  • Filters and hierarchies – what are they! I am open-minded, inquisitive and fascinated by everything – but dare not ask in case it’s the “wrong” question.
  • I spend a great deal of time masking. This means I have more opportunities, I’m taken more seriously, I look more normal and so get treated better. It also means I don’t get my needs met because no one knows my struggles. No one answers my questions. I make my body behave unnaturally in order to not upset people. Basically, I encourage my dysregulated state rather than using self-care. When people tell me to just be myself, I feel relieved – then realise they often mean “be yourself – but not like that!”
  • I get immense joy and healing through my senses and feel blessed that I experience things other people may miss.
  • I can focus on my interests with incredible intensity and commitment.
  • I see patterns, trends and details others overlook or filter out.
  • So long as I am allowed to experience it this way, my world is big, fascinating, ever-changing, and always full of wonder.

I frequently feel that I miss the things that many neurotypical people intuitively understand. I have always felt that way. I also feel that autistic people intuitively know what they need to do to regulate themselves, cope with the ups and downs of life and engage with the world. These things we intuitively know may not look very neurotypical. They may even be misunderstood, pitied or mocked. Perhaps they aren’t even considered self-care, simply because they don’t always look like a neurotypical person’s self-care. But my interests, and my sensory connections to myself and the wider world are my self-care. I have learned to play to my strengths. My autistic strengths.

At times of increased demand, an autistic person’s routines, structure, and self-care and regulation can include an increased need for order, timetables, questioning, and repetitive behaviours. This is not a sign of regression; not coping; or ‘becoming more autistic’. It is a similar response to everyone else’s and is driven by the autistic person intuitively understanding what will help them cope. Most people do more of whatever it is they do to cope in times of need. Whether that is writing more lists, biting their nails, hyper-focusing on a hobby, bouncing up and down, rearranging their CD collection in order – or whatever.

Fostering an attitude of kindness towards ourselves is good for our wellbeing. It can become a good habit if we practice it regularly. I had to learn how to make a habit of self-care. My default used to be self-hate. It’s not surprising when you have grown up in a world that is biased towards neurotypical people; that has increased exponentially in terms of the sensory information all around us every day; that doesn’t believe you, or thinks you are ill, disordered, broken or wrong when you try and explain how it genuinely is for you. A world that assumes you are deliberately doing what you do just to annoy everyone else. Surely an intelligent person like Emma can’t be that stupid.

But I intuitively knew I needed to self-soothe. I needed to find peace and calm. I needed to direct my intense energies somewhere. And for many years it was hit and miss. I accidentally stumbled across some good ways of achieving this and some dangerous ways.

It was not natural for me to shift towards self-care. I tried at various points in my life to follow particular methods, models and techniques. I frequently hear people say how meditation just doesn’t work for them; or yoga is a non-starter; or they don’t have time to do anything creative and wouldn’t know where to begin anyway. I’m one of those people. I am highly organised in some ways but completely unable to plan or remember to do any special self-care activities as well.

So I don’t. Well, I tell a lie, I sort of don’t!

Behind a waterfall

I needed to change my attitude towards myself.

Simple…

“Actually Emma, you’re alright really. Don’t take those negative thoughts so literally. Look at your achievements, you’re fab!” But I knew I wasn’t fab. If anyone is going to win a battle of thoughts and words against me, it’s me! Trying to convince myself logically that I was worthy of compassion didn’t work. I learned there was no point arguing with myself. Fortunately, compassion is not actually a feeling. It’s what you do and how you treat people.

But I also knew that I am a practical problem solver. I am not one who is overcome by emotions, and I have never been able to force my emotions anyway. So I stopped fighting myself. It reminded me of when I lived up this really rough track in the middle of nowhere. Friends who attacked the track in their car and tried to conquer it could end up knocking the silencer off their exhaust! I would set out at a slow speed and let the car find the path of least resistance. I’d gently hold the steering wheel but let the car find it’s own way around the potholes and over the bumps. I’d reach the top slowly and surely – and intact.

I didn’t make changing my mindset any part of my journey. Instead, I focused on making a new habit. This was the time where I had to be really organised and plan things with my self-care – it felt clunky and awkward at times. I felt painfully self-conscious and had to keep telling myself to back off when I taunted myself about trying to be compassionate towards myself. I remembered some tips from my music playing. Nigel Kennedy, the violinist says he slows a new piece of music right down so he can play it. And then he repeats it at least 40 times at slow speed. Even when he knows it off by heart and wants to speed up, he keeps creating his muscle memory through accurate repetition. Once it is firmly embedded, he can begin to increase the tempo.

Our brains are not a muscle. But they do have neuroplasticity and can create new pathways. So I practiced. I wrote a list of things to do when I felt bad. I kept it on my phone. They were simple things that would regulate my senses like doing some washing up; stretching an elastic strap; pushing against the wall; listening to music through headphones; eating some crunchy crisps or nuts. They sound ridiculously pointless. How can pushing against the wall stop me from feeling dreadful? But the key was to do them before I felt dreadful – and practice them throughout the day. They are not fixes, they are ways to feel regulated. Once I am regulated, my body slows down it’s search for hidden danger and things begin to gain their true sense of proportion again. Everything becomes more manageable.

I also practice my mindfulness techniques. I have used mindfulness for decades, I occasionally attend classes or formal sessions in order to refresh my knowledge. This isn’t essential, but works for me. Mostly I make sure I do things in a mindful way – once again, it’s a disposition rather than an activity. I may eat part of my meal mindfully – I’ll notice what the food feels like in my mouth, and how it tastes. I’ll put my knife and fork down in-between mouthfuls of food. There’s no way I could eat a whole meal in this way – just by attempting it I’d be putting myself under so much pressure, I’d ‘fail’. So I don’t set myself goals. I just check in with myself several times a day and have a mindful moment. No pressure, no goals, if it doesn’t feel right, that’s fine. Success and failure don’t form part of the experience. If I go a whole day without doing anything mindfully then so what. When I do things mindfully I have moments of peace. Moments of living outside of my busy brain. It really helps. This way of treating myself is compassionate and works well for my personality. I have a tendency to really get into the things I’m into. I’m either no good at something, or I’m an expert! I am either disinterested, or I’m its biggest fan. Self-care can be planned, it can be structured, but it can’t be forced. If it becomes an obsession, it stops being self-care.

How not to do self-care

But I like being into stuff! I quite like obsessing. I certainly love delving as deep as I can into a topic and immersing myself in new knowledge. That’s fine. I see it as one of my autistic strengths. My ability to hyper-focus in times of stress is like a laser beam of positivity piercing the fog surrounding my brain. So I do hyper-focus, but in times of known or anticipated stress like the current pandemic, I have a mantra of ‘wide not deep’ and ‘only positive’. I create myself windows of intense focusing and try not to fixate on only one topic. I have always loved nature and always will. It will always be my escape, my asylum from the urban world. I have absolutely disappeared off down some wonderful rabbit holes in times of stress. I have also focused on other topics too and I have actively distracted myself from immersing myself in struggles that will sadden me or that I cannot change. I may not have contributed to the solution but I haven’t added to the problem either. I sometimes need to be a pacifist and not join some of the wars our world is waging. I need to conserve my energy for my own battles, I need to strategise and conserve my strength for the battles I cannot avoid. I feel lucky that I have an ability to focus and enquire and explore subjects with objectivity and open-mindedness. My self-care involves using my interests as a distraction, to feel good, to achieve and to lose myself. I make sure I use that immense mental energy in a positive way.

I have written a blog about sensory joy and healing. I describe how it feels to experience intensely positive sensory experiences.

Sensory Joy and Healing

I make sure I prioritise those activities that bring my joy. For me that means walking in the woods; listening to music; having time with no noises from people; time with no questions; mindful moments where I just notice without analysing or questioning. It’s about reducing some of the cognitive and sensory demands.

I may notice myself being unkind towards myself – perhaps I’m berating myself yet again for how crap I am at life. Or perhaps I’m pushing and pushing in the hope things will go right, just because I want them to and I’m putting all this effort in. Sometimes I challenge myself, but mostly I shift my focus. I no longer need my list I practiced with. All that practicing has paid off. I am finding that mostly when things start feeling bad, or going wrong, or however I want to put it, I reach for compassion as readily as I used to reach for a personal insult towards myself. Of course I still feel bad – but I feel less bad about feeling bad. I can feel utterly fed up – but in a safer way than before. The world has not started treating me any better sadly. But I have stopped handing it so many stones to throw at me.

There are other simple techniques I use. These too were part of my practicing and now come more naturally. I read positive things people have said to me in messages. I bake a cake. I avoid interacting with people unless I am fairly certain they will not add to my stress. I do something helpful and kind towards others – it’s quite difficult to treat yourself badly when your mindset is on being kind to others. Even if I think I am the biggest loser on the planet, if I start doing something positive or helpful for other people, my self-loathing shifts.

I find positive physical things to do. Proprioceptive input is massively regulating for me. If I have that horrible sensation in my body that I can’t shift, that is crying out for pain, and that just won’t be soothed, then I mindfully and gently do something that gives me a massive hit of body awareness. Sometimes I think what I want is a hug, but I don’t always want the intensity of another person that close to me. Controlled movements are key. Pushing against the wall; deep massage with an electronic massager; my weighted blanket – all these help me to feel soothed and comforted. I can also create an awareness of my body through moving and enjoying the sensation. Whether that is repeating something that feels good, stroking something that brings me comfort, or even dancing around the kitchen disgracefully when no one is watching. I can locate myself back in this unpredictable, shape-shifting, sensory nightmare of a body again. I can begin to realise it is me and that’s ok.

Sometimes when it all gets too much I switch off to protect myself from further onslaught. It used to be hard to switch back on. I choose to stay engaged more of the time now, but that requires proactive self-care to keep myself regulated.

Here are some suggestions for how you might like to consider making self-care a way of doing things for yourself…

• If you feel yourself becoming tense, angry or stressed, take your time, back off from pushing yourself, take a few minutes to chill

• Accept that sometimes things feel tough and this is not your fault

• Use your senses to notice what you can see, feel, smell, and hear in this moment

• Do something that is fun – dance with your kids, make something, listen to music

• Regulate your senses and emotions so you are more able to cope

• Consider the language you are using towards yourself in your thoughts and words

• Treat yourself in the way you treat your most loved ones

• Make a list of helpful strategies you can go to when you notice you are being unkind to yourself

  • Do something kind for someone else
  • Find one good thing that has happened this year, this week perhaps, or even today. It you feel like it, find another, and another. Let that hyper-focusing mind seek out some positive memories and thoughts.