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!

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.

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.