In my previous blog Saying “Ouch” in all the Wrong Places, I describe our sense of interoception and how my sensory processing differences result in my brain receiving very muted signals about what I feel inside my body. The blog gives some examples of how this manifests for me and the challenges this creates when attempting to describe medical symptoms and access appropriate medical support.
Today I visited the dentist. Dental appointments would have been unthinkable when I wrote that earlier blog, but with support over the summer, I have had several visits to the dentist, requiring x-rays, a tooth extraction and follow up treatment for ‘dry socket’. I went back today because I was experiencing symptoms of severe pain.
Note that I state experiencing “symptoms” of severe pain and not “experiencing severe pain”. Whilst my muted interoceptive experiences have remained similar, my understanding and acceptance of what they mean for me has changed considerably.
Each of us experiences pain differently. It’s common knowledge, and we often attribute unhelpful value judgments to people’s experiences of pain. The way that our brain processes the signals that come from our body is unique for each of us. It is dependent on the context too, and can fluctuate. This is accurate for all people, but Autistic people and those who experience sensory processing differences for other reasons, may experience sensory information in different ways. Not just internal body signals; but noise, taste, touch, smell and visual information too. We may experience sensations intensely, or they may be muted. Sensory information could be distorted or fragmented, or take a long time to process.
My personal experience of pain tends towards not noticing it until the sensations are very strong. This is not because I am some brave superhero – it’s just how my sensory processing system works. My brain requires lots of interoceptive sensory information to register something is happening. Conversely, my tactile processing system needs only a tiny bit of sensory information to register with my brain and I can incorrectly appear to be oversensitive to labels in my clothes, or having wet hands for instance.
How I experience pain:
Just because I may not have a strong awareness of something in my body hurting, doesn’t mean I am not in pain. If a medic asked me to use a pain scale to rate the severity of my toothache this morning, they would have been met with a puzzled look and a “I’m not sure….It’s not too bad, I suppose” – I certainly could not have attributed a number between 1 and 10 to indicate how severe it was. In fact, the stress of trying to define what was wrong and where in my body that sense of something being wrong was located, could have pushed me into complete overwhelm. But I was in pain – only I didn’t feel it in the conventional way.
On Saturday I recognised a change in my mood that was not related to any circumstances or life events – in fact I was having a great day with lots of absorbing activities to occupy me. I found I could not regulate my sensory processing system – and as someone who is proactive in sensory regulation and incorporates it as part of my lifestyle, this concerned me. It was dramatic enough to make me realise that something potentially serious was going on; and because I have an awareness of how I experience pain and illness, I explored whether it could have been caused by pain.
I scanned through my whole body, inch by inch; noticing whether I could detect any sensations, or none at all.
I tried to put my “something is wrong” feeling into words but couldn’t. So I didn’t push myself.
I distracted my mind from disappearing into my black mood in search of why “I” am so wrong, and brought my awareness back to my body. This required a huge leap of faith on my part as I have experienced extensive negative feedback from professionals about my insights into my own needs. However, I know myself well and there is little to be gained by stressing over whether I will be believed or not – or whether I am making a fuss about nothing. My dysregulated sensory processing system and my distressed emotional state that could not be regulated by my typical everyday self-care, told me that I was most likely unwell or in pain.
I checked I did not have Covid-19 and my lateral flow test was negative. I tried to notice any symptoms, such as a runny nose or a cough, or limbs that were an unusual shape, but couldn’t detect anything of note.
I considered the type of negative thoughts I was having and rather than challenging them or getting drawn into them, I stood back and wondered what they were trying to tell me…
Noticing where my pain is:
Using my skills in logic and analysis, observations from years of supporting people who communicate without talking; and combined with past knowledge of myself, I considered I may have toothache. I had needed dental treatment in the summer, so this seemed a strong possibility.
I examined my mouth and face in more detail. I noticed that if I touched my jaw I felt slight pain. I looked in my mouth but saw nothing that indicated swelling or infection. As the day wore on, and into the next day I found that I noticed slight earache as well as the sensitivity when I touched my jaw. It was as if the overwhelming and widespread feeling of something being wrong was settling in one place. The sensation was certainly not pain that could be classed as severe, but I recalled how the abscess that had required a tooth extraction in August had created similar mood changes and sensory dysregulation in my body.
When I visited the dentist in the summer they tapped my teeth and explained that if there was a problem I would soon know! I did not react with a typical pain response but the x-ray showed what they referred to as a pathological cyst. When I viewed the x-ray back in the summer, it enabled me to place my pain in my body, and my mood symptoms lifted, I was more able to regulate myself and I began to notice my toothache and could treat it with painkillers.
I decided I would telephone the dentist on Monday morning. I pushed aside my anxiety about making a fuss and made a plan. I knew the dental receptionist would ask if this was urgent and would qualify that by asking if the pain was so severe it was keeping me awake. This line of questioning delayed my treatment in the summer because I answered honestly and said “no”. However, I realised back in the summer that I was incorrect with my response of no. The pain was preventing me sleeping because I was having nightmares, distressing thoughts, and panic attacks. These symptoms that are typically associated with mental illness are closely linked to physical illness in my case. My nights have been disturbed for some weeks and although I have not had a sensation located in my mouth that has kept me awake, the pain has kept me awake by manifesting in other ways.
The receptionist was accommodating and listened as I explained that my pain was as bad as it had been in the summer. Fortunately I could have an appointment later that morning with the dentist who knew me well. I have very specific support needs when visiting the dentist and was relieved to be seeing someone who knew me.
My appointment resulted in confirmation that my cyst was still there, in the same place and the same size. The extraction and weeks of antibiotics had not healed it. Further treatment is booked and I left feeling reassured.
I am learning to trust my own knowledge of how my body works. This is no easy task when my life has been filled with invalidating comments, disbelief and failure to address my needs.
Some people work hard to identify sensations in their body and name them “correctly” and describe them so they fit mainstream expectations of how bodies work. I feel no need to do this. I prefer to develop my self-knowledge and accept this is how MY body and brain works. I would like more people to accept the way my body works is “normal for me”.
At times it may be helpful to frame my experiences in ways that clinicians accept and understand, in order to receive timely and responsive treatment, but I do this purely for that reason and I would love to be able to use my own language and lived examples, and be taken seriously. Sadly, if I explained I had mood symptoms and thought it was actually toothache, I would likely be seen as neurotic. I get better treatment by stating I am experiencing symptoms of severe pain. Those times when I am unwell or in pain are not the best time for changing attitudes!
Locating the pain reduces the risks that come from being so dysregulated. It also enables the pain to be treated.
It is interesting to note how once I have located where the pain is likely to be, I start to feel it slightly. When the location is confirmed by x-ray or other tests, it begins to hurt more. The overwhelming sense of not being ok that fills my body, condenses into its correct place. Clinicians can really make a difference to people like me by listening with interest and without judgment. Learning to explore your whole body and notice anything different can be useful too. I have used mindfulness for decades and find body scans help me. Pain scales are not a good indicator of severity of pain for some people – what is more useful is having trust in the person’s ability to notice that something is not right for them – and then support them to explore it.
I was prompted to write my first blog when I saw the frantic rush by shoppers to buy toilet roll. It triggered my own anxiety about what would happen if panic buying resulted in me not being able to buy the very specific brands of food that I must have.
The world did not run out of toilet roll, pasta, crunchy nut cornflakes or any other items and my anxieties about shortages were unfounded.
However – my distinct lack of anxiety about the potential impact of coronavirus on my health – I believed I would be at low risk due to being healthy and unsociable – was proven completely wrong.
I did become ill in the weeks following writing my original blog and needed to visit the hospital due to my continuous cough and breathing difficulties. This hospital visit was unlike any hospital visit I had made before. Some positives came from it and I was able to share my personal experience of sensory distress and confusion with the health board who were developing some fantastic resources for people who have a learning disability or are autistic. I’m glad I could use that traumatic experience to help others.
I worked as a key worker until late August and also in my role within Autism Wellbeing. We began producing information for people affected by autism. Tips for autistic people; their families; carers; and colleagues; covering everything from the language used in the pandemic; masks and PPE; coping with change; self-care; returning to work and school; and coping with the “New Normal”.
Our popular Covid-19 Resource pack has been widely shared and downloaded. You can get a free copy by following this link:
In fact, we were nominated for and awarded as “Local Lockdown Legends” for the work we are doing online and in our Facebook peer support groups for autistic adults and for parents/carers. (And by the way; many group members are in both groups).
At home we focused on our son. He was already home educated and I watched how parents of school educated kids tried to juggle working from home with providing a full time education. An impossible task. Collectively across society, we all did our best and realised there were many benefits to the computer screens and games consoles we often feel as parents are ‘taking over’ our children’s lives. The ability to chat online and out loud to friends, to play games together and stay in touch from the privacy of our own homes is invaluable and has been a life saver for many people. Here is a personal post I shared on Facebook as the first UK lockdown was announced. And a follow up 2 months later:
We are still learning about what is important to us. We have found that routines work well – and letting each family member set the routines that are most important to them is even better. I tend to bake a cake each weekend, we have pizza and a film on a Saturday – we have found that making the weekends special is important for us so we don’t feel lost in a world where every day feels like Sunday.
My initial fear – in fact it was more like a recurring bad dream, was of the pandemic ending abruptly and the streets being filled with people making lots of noise and desperate to hug me – imagining this filled me with terror. Of course, this is not how it has panned out.
I am so lucky, I live in a beautiful place. The natural world has been my escape, my place of solace, my predictably changing best friend throughout the pandemic. I have watched the bare branches of the beech and oak trees in my local woods fill with leaves until the woods became darker under the shady green canopy. And now, they are almost bare again under the steel-grey autumn sky. I have seen wood anemones make way for bluebell and the foxgloves. The Red kite I began observing on March 13th probably nested and raised chicks – but I’ll never know – my blog diary was never finished due to travel restrictions. I satisfied myself with writing about the history of Red kites in Wales instead. Here’s a link to my wildlife blog below. I also continued to write a nature column for my local newspaper as well as running my wildlife Facebook group.
Our family also faced challenges. Being unable to visit a parent who was rushed into hospital on two occasions during lockdown – not even being able to find out what was happening due to confidentiality rules, was upsetting and frustrating and left us feeling helpless. Not being able to meet as a family to lay another family member’s ashes to rest and pay our last respects was tough too. The uncertainties of the pandemic were topped off with the uncertainties of family life.
And on top of this my husband and I have post viral fatigue. Long Covid is what people are commonly calling it. I have had swollen joints, shingles, urine infections, breathing difficulties, and tiredness like you cannot believe. I have barely enough energy to keep myself feeling regulated and my sensory processing has swung from hearing every noise, finding daylight painful, becoming nauseated by any smell – to – not feeling a thing, not knowing where my bruises have come from or finding my hair is matted from where I have rocked unknowingly and continuously all night long in my sleep.
I have felt confused, scared and bewildered. I initially felt annoyed that people were clapping for the NHS – mainly because I like peace and quiet and the sound of my neighbours beating the hell out of saucepans every Thursday evening left my body activated and ready for flight, fright or freeze from the moment I got out of bed on a Thursday morning. I now wish that society was still coming together in this way – the sense of us all being “in it together” has diminished. People are calling other people out for perceived breaches of lockdown and are jumping on bandwagons they had no interest in before. I watched friends throw every ounce of their energy into campaigning about “Black Lives Matter” – my sentiments are with them all the way but it felt like this and other topics were being used as a distraction from the boredom, worry and upheaval of the pandemic; and I watched with shock, bewilderment and disappointment as I saw other friends demonstrate the most ill thought out and racist behaviour ever. I witnessed parts of society get fed up with staying in when the sun came out, so off they headed for the beaches and countryside. It felt like all the world was out of control all around me. It looked to me as if everyone was on the verge of total emotional overwhelm – people I view as level headed were sharing memes and fake news without checking for facts first – pressing “Like” or “Share” because it gave them a shot of something that momentarily eased whatever negative feelings the pandemic created in their bodies.
And I kept baking my cakes on a weekend, kept working, kept walking every day I could. Kept up my self-care and kept going and going and going. My ability to keep doing the same thing again and again in the same way has kept me focused and strong.
And some days I felt peace and at one with the world – I loved the simplicity, the lack of socialising, the space – and the quiet. And on other days I felt stifled, trapped and unable to find any peace – either internally or outside my body. Our one living room felt way too small for a family and I would have given anything for the endless questions about when can my son see his friends again – or the rants about what the government were or weren’t doing – or the continual noise and movement that inevitably comes with living as part of any family – to just stop!
I wondered whether autistic people would fare better than others because we are so skilled at having to cope with uncertainties. We rely on routines, structures, and rules, and are famous for preferring our own company. I wrote about how there was no better time to be an autistic person. In fact, I have a secret to share… Although my autism was never hidden, I had never articulated to the wider world what it was like for me. So I decided to write a blog because I knew I was very unwell – I wondered if I would die from coronavirus and I rushed this out so at least people would know what life was like for me if I did die. I also wrote an article for the local paper about finding peace in nature and calling for humankind to be compassionate towards each other.
Did I do better than anyone else because I’m autistic? Well, firstly it’s not a competition. We all need to play to our strengths in order to thrive in life. My strengths are by their nature autistic. Unfortunately, the medical model of autism describes them in terms of deficits and what is “wrong” with me. My need for consistency and routine, and my unique way of experiencing the world through my different sensory processing system are viewed as symptoms of a disorder. Does being autistic make the pandemic easier to cope with for me? Yes. Would it make it easier to cope with for you? Probably not. We each need to utilise the coping strategies that work best for us. But of course, there is scope to learn from each other, regardless of our neurologies…
Many of us have found we have needed to work from home during the pandemic – and many employers have embraced this and seen the benefits. Some disabled people have been requesting to work from home for years, whether due to accessibility issues that affect mobility; or accessibility issues around transport, communication and the sensory aspects of workplaces. Lets hope that those people who work better this way can continue working from home. I have been home based for many years and was able to give tips to other working people about planning your day; taking breaks; effective communication; and work/home balance.
No discussion about the workplace would be complete without mentioning video calls. I went from being someone who could not even look at a photograph of herself; to being an active participant (if a bit overwhelmed and reluctant at times!) of conference calls; to being featured in films and training videos. It was a Herculean achievement, reached by taking many painful, brave and challenging small steps. The world of conference calls highlighted many of the challenges autistic people face with communication. Not just the act of being on screen and talking to people – that can feel bad enough! But the technological issues that occur during a video call – these feel familiar to me in my face-to-face interactions:
- The lag between speech and mouth movements that makes verbal and non-verbal communication slightly out of synch – that’s how my brain processes communication ordinarily. I put a huge amount of effort into matching up facial expressions, body language and speech so that it makes sense to me.
- The background noises are amplified on a video call – the scrape of chairs, tapping of keyboard keys, coughs, hiccups and slurping tea – these all sound at the same volume and intensity. Welcome to my usual world of sensory processing where nothing gets filtered!
- The lack of spatial clues means you can’t tell where those “mmmm’s”, “uh-huh’s” and other meta-communication is coming from. You may miss the shaking head of disagreement from the person off-camera because your focus is on the person who is speaking. There is soooo much to take in. No wonder we get zoom fatigue!
Did I take up any new hobbies? No
Did I get fit? No….Sorry Joe Wicks…
Did I learn anything about myself, my family and the wider world? Yes, loads.
Do I feel hopeful?
I have fluctuated between feeling hopeful and feeling despair. I viewed the initial “togertherness” positively: the sense of communities supporting each other, clapping together, helping each other out. I remember a video doing the rounds on social media back in the early summer that spread a message of hope and how we’d learn and become a better society because of the pandemic. I cynically thought to myself, that we probably wouldn’t.
I watched the way the media used language, imagery, metaphors and colours to emphasise whatever mood they wanted to portray. I made accurate predictions of the government’s next moves – I’m no conspiracy theorist, or political expert – just an accomplished spotter of patterns!
I have seen people ride by on a rollercoaster of emotions, I have occasionally hopped on and off myself! A “coronacoaster” as one meme describes it.
Coming out of a 17 day Welsh lockdown today, having been on tenterhooks over the US election, fatigued by post viral illness and worried about my family and what the future holds; I could easily feel hopeless – I do feel hopeless. And that’s OK. This pandemic really sucks sometimes!
But when I reflect and look back at the positives that have only happened because I have been alive on this planet in this exact period of time, then yes, I do have hope…
- I have gained friends
- I made a flute out of a carrot
- I have started a PhD
- I have swung on rope swings, gone wild swimming in rivers and ridden my motorbike
- I am working with colleagues who value me
- I have overcome challenges I thought I’d never face
- Covid didn’t kill me
- I have written…and written… Autism blogs, wildlife blogs, nature columns, information sheets, contributions to a paper on Sensory Trauma, contributions to ‘Neuroclastic’, Facebook groups and pages, and scene 1 of a play- my first ever work of fiction.
- And on one occasion I chased a pig and got over 30,000 social media views for my efforts!
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!
I needed to change my attitude towards myself.
“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.
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.
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.
“Mummy, I’m happier now I’ve got a new routine”. This is a relief for us all in our family. We are no different to any other family at the moment coping with these strange and uncertain times. Some of our challenges may feel a bit quirky, unusual or just plain selfish to other people but they are our reality in the same way that every single individual, couple and family will be having their own unique set of challenges at the moment.
We were eating our Sunday dinner. This was important. My husband had cooked a favourite roast meal for us, the same as on any other typical Sunday. I made sure that my veggie sausage acted as a gravy breakwater so that no gravy seeped on to my roast potatoes. What I would have given when I was young to have those food dividers on my plate to ensure separate foods didn’t touch! But back then when I was growing up, it was called being a “fussy eater”. My son, who is a teenager and now bigger than me; and who enjoys wrestling; cartoons that involve lots of swearing and gross-out humour; and is planning how he will attract girls by developing a muscly chest and holding our cute dog in a photograph for his tiktok account (I kid you not!) has mashed potato not roast. And it is lovingly crafted into the shape of a steam ship by my husband – complete with upright sausage funnel. This familiarity brings us pleasure and reassurance. Even the dog is happy, she recognises Sunday by all the visual, scent and auditory cues that go with our weekly roast dinner and she’s eyeing up her bowl in readiness for some leftover veg. If our son settles down with a partner when he is older, I hope they have skills in making sausage and mash steam ships!
Our son announced to us that he was happy because he has a new routine now. He listed his routine and although it didn’t sound that educational, healthy or varied, it was a good solid routine that would fit into these strange times and add some predictability and control for him. It is like this:
- Get up
- Watch a cartoon
- Play video games
- Go outside for the afternoon
- Watch YouTube videos
- Watch a comedy programme or a car programme
- Bedtime story with dad
In fact, it is a fantastic routine because he has created it himself and we can add in various bits and pieces to his day that won’t upset the routine but will add variety and balance. For instance, the YouTube video watching time can be used to slip in something educational. The video games time can be spent online gaming with friends – including old friends he has lost contact with. The outdoor time can be used for all manner of activities that will promote exercise and wellbeing.
Before this new routine had become set in our son’s day, he was extremely restless and although I feel I shouldn’t say it; demanding. He cannot initiate activities for himself and it was an endless “mummy” (said in a very particular tone that consists of 4 syllables and a whine) “what shall I do now?”. This was mostly because he did not know what to do but also because he freely admits he likes saying “mummy” like that. He tells me that he finds the sensation in his mouth and ears very satisfying. It probably also creates a stronger reaction in me than his normal chatter if I’m honest, and as someone who is not particularly demonstrative or outwardly emotional, he possibly enjoys seeing my lack of patience escalate whilst I am trying to look calm and normal! Of course, getting fantastic sensory feedback from certain sensations can be very stimulating and if you repeat them endlessly it can create its own sense of calm, predictability and control – and just plain, feel nice – which is important to remember during these times where so much doesn’t feel nice because of the anxiety whirling through society. I am sure an increase in repetitive behaviours is a fact of life for many autistic people at the moment. His new routine hasn’t stopped him asking questions or seeking reassurance about what is happening or needing prompts for what to do next but it has helped him feel slightly calmer and helped us as parents understand him better which means we can respond in a more helpful way. It means we can concentrate more on our own self care which is vital, particularly when you are all under one roof. I need to wind down at the same time as our son winds up in the evenings and this can create quite spectacular meltdowns from us all if not anticipated and proactively managed. I’m not saying it will avoid overload or overwhelm but it has reduced the impact of it.
My own anxiety about the uncertainties has increased too and of course my autism is affecting how this looks and feels. I imagine I have the same anxieties as the rest of society about getting ill and seeing loved ones get ill. And the whole, massive, almost infinite box of “what ifs?” and “whys?” that is sitting directly above my head, drip feeding my brain at the moment. My routine hasn’t changed much and some pressures have been reduced because I thrive on working from home and my job is safe, my employers are fantastic and I have a valued and important job that is enabling me to focus my coronavirus anxieties and the need to plan, control and understand what is going on into something positive, useful and beneficial. It also means I can leave Covid-19 at the metaphorical office door when I finish work and I can focus on other things.
It is important for me to have breaks from interests and I crave balance in my life constantly because I know it benefits me. I have a tendency to hyper focus and fixate on things to the point of obsession and this can be detrimental to my wellbeing so I need to compartmentalise things so that they don’t take over. “Broad rather than deep” is my mantra at the moment. Although I readily admit that my ‘normal’ depth is probably deeper than most people’s – I can’t just let it lie, I have to explore, find out and see how everything works. I can hear my mum’s voice berating me “you have to fiddle with everything don’t you, why can’t you just leave it alone instead of taking it apart and breaking it?!” I have always been an analyser.
Social distancing. I had never heard of this phrase two weeks ago, but I am loving the experience. I am absolutely not being facetious about this. I have been more sociable than ever before. I have reconnected with old friends, colleagues and acquaintances and I’m enjoying the online contact with them. What makes this work is that there is no expectation that we will have to meet face to face. I avoid friendships and going out in groups because I find it so painful not knowing what to do and say and it reminds me that I am different – and that reminds me of every negative experience I have ever had of being weird, different and an easy target for bullies or teasing.
Our son is from a very different generation. Differences are more accepted and he has grown up with ‘different being normal’ in our family. He is far more self-assured than I am and he is missing his friends and the face to face contact and being able to run around with them and play fight and hit each other and muck about and wrestle them. Strong proprioceptive input is important for his sensory regulation and although I am a middle aged woman and smaller than my son and therefore not a good wrestling partner – particularly if you take into account my accident proneness – we need to find time for lots of strong hugs and squeezes and physical work like digging the garden and moving firewood and bouncing around on a gym ball. He also misses talking with his friends and the PlayStation is a wonderful tool at the moment because he can play online, (combat games mostly) and pop his headset on and talk to them. It does make the house feel rather small though with his put-on Cockney accent shouting orders at his platoon to take down enemy troops!
Education can wait. It can be done by stealth. Sneak in an educational YouTube video; strike up an interesting and informed discussion or debate about sociology, politics and the media – there is after all a wealth of information out there ripe for discussion. The biggest lesson I hope he learns from this is how to develop resilience and good coping skills. I wasn’t taught these and I didn’t learn them myself from watching others. What I did learn as a child about coping was not always the healthiest or safest ways to get by and has cost me deeply in wasted years where I no longer thrived and in ‘treatment’ and therapy to put things right. It was far easier to rebalance my missed education. School was not a good place for me and in terms of exam results I certainly ‘failed’ even though my attendance levels were high and I did not miss time because of a pandemic. When the time was right I completed a Masters degree and I have just written out my proposal for the PhD I am going to undertake. It was relatively easy to achieve with hard work and the right sensory environment for studying in. What was much harder to rebalance and is a daily effort on my part is my mental wellbeing.
Self-care through these times is essential and I hope we can make a better, fairer, kinder society because of this pandemic. Even if we can’t, the most important thing for our family at the moment is being together, reflecting on what is important to us and for us and helping each other cope. That is the thing we can influence. We cannot make politicians see sense, we cannot make people follow advice, we cannot learn everything there is to know about immunology and virology and medicine and even if we did it may not change anything. But we can take our time, take stock of who we are and create new routines that work and demonstrate how important it is to take care of ourselves. From that, good coping skills and resilience will come and that will be a more useful lesson in life than doing sums or history lessons.