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5 minute read Autism camouflaging masking social communication wellbeing

Snapshot: a typical day in the professional life of one Autistic woman…

The Covid-19 pandemic has led to a change in how we carry out our work for all of us – and for many of us that has meant working from home and reduced social contact.

My typical working week has gone from face-to-face meetings, visits, and home or office based work, to almost exclusively working from home with those face-to-face meetings replaced with video calls and most visits postponed. I wrote about zoom fatigue and the analogies it has with Autistic communication, last year.

Yesterday was different. Yesterday I stepped out into the “real” world and was required to drive to the nearest city and check out a potential location that may be suitable for delivering a service…..

And oh my goodness – did I really used to do this every day??!!!!!

Photo by David Marcu on Unsplash

The journey was great, I have always loved my time alone in the car listening to the radio or energising myself with a loud and uplifting tune. It gives me uninterrupted space to prepare my thoughts before appointments, and process them afterwards. In fact, this “thinking time” is something I miss in my working life.

Prior to leaving home I added the name and phone number of the person I was meeting to the notes app on the home screen of my phone. When I have lots to process, I can find it difficult to navigate my phone because I can’t find the right app or read numbers and letters easily. I was familiar with the area of the city I was visiting but used an online map to view the front of the building – this helps me hold an image in my mind of what I am looking for. Needing to look for something when I don’t know what it looks like is a non-starter for me. Potential business clients can help me (and lots of other people) by sending a photo of their building as part of any joining instructions – and if they send one of the person I’m meeting too, then I will be seriously impressed!

It was a frosty morning and I de-iced the car in plenty of time and dug out my warm wool coat from the back of my wardrobe. It has been some time since I wore it and it’s heavy weight and smart appearance was just what I needed to make me feel embodied, confident and business-like. Plus it has a pine cone in one pocket and a squidgy toy in the other, that I can hold and squish and feel without anyone noticing!

I was in the zone, so I got in the car and headed off.

I pulled up to the ticket machine at the multi-storey carpark entrance and wound down my window. I was offered a choice of pressing a button to talk to someone or pressing a big, flashing button with no instructions. I decided that the flashing button would be for the ticket, having reasoned that one doesn’t usually need to hold a conversation with another person in order to use a carpark. Correct! Pressing the button resulted in a ticket shooting out towards me and the barrier lifting up. I smiled to myself and noticed that already my racing mind was consciously thinking through everything – working out what was going on and why; and how I should respond. Those intuitive, “everybody knows how to do that…” activities that many people take for granted, often require considerable processing by myself and other Autistic people, and can result in me appearing slow, confused, stressed, overwhelmed or anxious.

Once parked up I needed to cross the road to the building I was visiting. The 4 lanes of traffic, including a bus lane, were in stark contrast to the country lane I live on, and I had not experienced such a volume, speed and noise of traffic in a long while. I stood at the kerbside, looking right then left, then right again but dared not cross. My brain could not process the speed of the vehicles; and the overwhelming noise meant my eyes couldn’t see properly and I could get no sense of how near or how fast the cars were by using my sense of vision or hearing. I gave my brain and body a few moments to settle and I instructed my feet how to move. Imagine a party game where you are instructing a blindfolded person around an obstacle course; “lift your left leg up a bit, no not that much, move it forward 30 cm, careful now” etc etc – that’s the level of instruction I need to give my body when coordinating movement in certain situations. I cautiously crossed the road once I was ready.

The building I had seen on google maps was right in front of me and I was pleased that I had looked up a photograph before leaving home. I even noticed the restaurant to one side and the shop to the other were exactly as pictured and I felt reassured by this tiny piece of familiarity and predictability. The doorway to the building had 3 panels of buttons for calling the various companies inside. Some had labels and some didn’t. There was a sign saying “Press doorbell for reception” and I looked all over the door from top to bottom but saw no bell and no switch that could be the bell. My eyes went back to the panels on the wall, and I tried to find one that had the name I was looking for amongst the moving mass of letters, numbers and sticky patches where labels had fallen off. I wondered if the sign requesting “Press doorbell…” was referring to one of these buttons on the wall? Perhaps what I think of as a doorbell – a single button on, or right next to a front door – means something different in an office environment? Maybe I could use the internet to search for “what is meant by office doorbell” or “how to find a doorbell amongst a load of buttons” – perhaps if I searched it up online and clicked “images”, I would get to see some examples of what this type of doorbell could look like that I could match to what was in front of me? But I decided against it. I needed to get my brain back on track so that I could attend my meeting.

I pulled out my phone and went to the note taking app on the front screen and called the phone number I had recorded there. No answer. I searched for the main company phone number, thinking that if the receptionist was going to meet me at 10.30am as planned, they would probably be at their reception desk and answer the phone….they didn’t.

I looked back at the panels of buttons and tried to work out the correct protocol for choosing which one to press. After much logical thought and a fair amount of trying to work out the potential impact of me pressing the “wrong” button, I decided to go for the panel that had numbers and one slightly larger button with a picture of a bell on it. I pressed it and waited. A voice came from the tiny speaker and I introduced myself, apologised for probably pressing the wrong button and enquired whether I could be directed to the company I was due to meet with.

All I could hear from the tiny speaker was a mumble of human noises against the backdrop of equally intense roaring traffic, seagulls, slamming doors, people shouting and talking, wind, car horns, bus engines revving, tyre noise against the road, brakes squealing, my breath, my heartbeat in my ears, the creak of windows being opened, the jangle of the door being opened on the shop next door, the delivery men unloading their van, the radio from the same van…..I picked out a few words from the mumble of human noise coming out of the speaker: “other door”, “Chinese”, “right”. I said thank you and walked away. I felt sad.

I considered going home and recalled how on one occasion I drove 150 miles to a meeting and had a similar experience, I left without even entering the building. I reflected on how difficult it is for me navigating a world that my brain processes as overwhelming. I ensured I regulated my senses because I recognised the overwhelm was spilling over from my senses and into my thoughts that were spiralling downwards into “why is it you are so rubbish”. I find it more effective to regulate my senses than challenge my thoughts at times like these. The issue is primarily one of sensory overload rather than anxiety. The anxiety stems from the sensory overload. I was grateful for my loss of smell and taste – the legacy of Covid-19 infection, as the diesel fumes, cigarette smoke and litter smells could have easily tipped me over into meltdown.

I put my hands in pockets and used my sensory items. I stepped back from the doorway and instructed my brain to pull away from tunnelling down into the finer detail and I got myself to look at the bigger picture. I searched for anything that could give me a clue. I walked down the side road, reminding myself that movement is regulating and good at times like this. I swung my arms a bit and made sure my fists weren’t clenched. I did not find the door. I went back to the main street and walked the other way and lo and behold there was a doorway with a sign on it for the company I was visiting.

At this point I stopped. I reminded myself that the people I was meeting did not need to be told about the online map showing the “wrong” door under the business entry for their company. They did not need to be told that I had tried phoning the receptionist just like the joining instructions detailed, but no-one answered. They certainly didn’t need to know about the traffic or the ticket machine buttons or any of the other ****ing buttons! They’d have no interest in my experience of crossing the road. If they asked me how my journey was – they would not be requesting any of this information – they wouldn’t actually be interested in my journey!

Now was the time to regulate myself and rehearse my “eye contact protocol”. Face coverings make this trickier as I tended to look at people’s mouths prior to masks becoming the norm. On video calls I make awesome eye contact because when you look at your laptop camera light it appears you are making eye contact with the person. You don’t even have to look at their face at all or even have it on your screen if you don’t want to!

So I gained entry into the lobby and BAM! the intensity of the lighting gave my brain too much information to process once again. Thankfully my already (fairly) regulated sensory processing system was able to cope and I prepared myself for meeting my host by repeating my mantra of “look directly at the person and say hello, then scan the environment whilst commenting on how nice it is, then make brief eye contact each time the person pauses”. I walked up the stairs, took a big breath through my nose not my mouth – mouth breathing in a mask feels extremely unpleasant, and in I went.

I am sharing this because it is my reality, and I recognised yesterday how far I have come in terms of understanding myself and managing all this. The world has got no easier, but I have become more able to meet my own needs. I no longer wonder why I am so rubbish at life – I’m brilliant at life – it’s just most people don’t have to go through the level of stuff I have to go through to get to a meeting, let alone to cope with the social, communication, sensory and other demands once inside.

This is a snapshot of me on a good day. To get a true picture of a good day I should add in the social anxiety about how I’ll come across in interactions and the anticipatory anxiety about what is going to happen. Plus the additional sensory input from perfume, aftershave and cleaning product smells; food that I need to eat or decline without causing offence; stairs and chairs to navigate without falling over; handshakes or physical contact; and remembering that I probably won’t recognise the signals in my body that tell me I need to drink or use the toilet until the last moment. I will be consciously repeating the protocols for dealing with small talk and making eye contact.

And if this is a good day – consider a bad day! Illness or stress make all the above far more challenging. No safety to regulate myself or seek clarity makes things worse. Masking autism for sustained periods is harmful, but is sadly necessary for me, in order to take part in the world as a professional person.

What will help?

There are some practical examples in this blog. Photos and clear information and joining instructions. Physical environments that are designed to be more accessible from a sensory processing perspective. Improved understanding of what it is like to be autistic –contact me via our website if you’d like to find out about bespoke training for your organisation or for yourself.

What helps me most is having a proactive approach to sensory regulation. I also use mindfulness – not as an exercise or technique that I plan into my day, but as a way of dealing with situations. I have learned to pause and notice and accept how I experience the world before reacting.

This short film is one of Aesop’s fables and I frequently reflect on what it means to me and how I treat myself in my thoughts and behaviour – perhaps you may take some positive meaning from it too? I recognised the need to follow the moral of the tale on my way home from the meeting yesterday – I was proud of myself for handling the run up to the meeting I described in this blog, plus everything that went on once inside – and I considered I could ‘quickly pop into the shops’ on my way home. Of course the additional demands this placed on my sensory processing system overloaded me instantly and I walked away considering I had done done enough brilliant stuff for one day and should give myself a break to recover and recuperate, and not push myself harder.

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Autism interoception wellbeing

Saying “ouch!” in all the wrong places …

Ouch!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Soothing my own “ouches”

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

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

But it still hurts!

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

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

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

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

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

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.

https://undercoverautism.org/2020/08/03/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.

Categories
Autism wellbeing Wildlife

Making Sense of Nature…

“Where’s the best place round here to see badgers?”

“I saw this bird, a bit like a sparrow but different, any ideas?”

“What sort of the poo do you think this is?”

I am frequently asked questions like these, and I’m absolutely delighted that when people have a wildlife-based query, they may think of me as someone who could help.

My knowledge doesn’t just come from having a good memory, and it certainly wasn’t taught to me in school. My passion for the natural world is lifelong and developed from a childhood spent reading – and walking about, noticing things.

I grew up in the days before we could conduct research on the internet, and I spent many hours poring over encyclopaedias, and also reading lots of fiction which seemed to include more descriptions of the specific species of plant and tree than many children’s books do these days.

I have always been someone who enjoys my own company and as a girl I would walk or cycle around the country lanes, sand dunes and beaches in my neighbourhood. I’d horrify my parents by disappearing off for hours on my bike to Brean Down, one of the Mendip Hills jutting out into the Bristol Channel near Weston-Super-Mare. My propensity for tripping over, falling off my bike, or otherwise ending up in some sort of scrape was well-known, and Brean Down was a steep climb with sheer cliffside drops into the sea, and was riddled with rabbit holes, just ripe for twisting an ankle in!

I’d sometimes cycle there at dawn or dusk and dodge the feral goats which stood intimidating tourists as they ascended the steps to the 100m summit of the limestone promontory. And then I’d secrete myself away and keep very still. The Down is a site of special scientific interest (SSSI) and has rare flora like the white rock rose. It’s also a great spot for watching peregrine falcons, kestrels and ravens. But the animals I wanted to see were the rabbits. They were incredibly common and if you sat very still and just waited in the crepuscular light, you would soon find yourself surrounded by bunnies. It always felt an utter privilege to be able to sit near them and a great use of my special ability of being able to blend into the background without being noticed.

This rabbit photo was taken in Gelli Aur Country park back in 2008. There has been a significant decline in rabbit numbers across the county of Carmarthenshire in recent years.

As well as an ability to silently disappear when I need to, I have a remarkable sensory processing system. Like many autistic people, my sense organs see, hear, and smell in a fairly average way. But my brain processes that sensory information quite differently. This means that some of my senses work in a way that is quite muted and requires lots of input to register a sensation, whereas other senses need hardly any information at all to register what is happening. This fluctuates and can become more extreme when I am under stress, worried or having to process lots of information (sensory or otherwise).

An example of where one of my senses may often be muted (or hyposensitive) is in my  proprioception – the sense that tells us where the various parts of our body are in space (close your eyes and stick your arms in the air – wave them about – whether your arms crash into each other or not is down to your proprioception). My sense of proprioception is responsible for many of my accidents when I trip over my own feet, misjudge a step, or bump into a doorframe.

On the other hand, my senses may by heightened at times (hypersensitive) – and this too has pros and cons. I can find the noise of a door banging closed, incredibly loud, to the point of it making me jump with fright and my ears hurt. But I can also hear the wasp chomping on the wooden frame of my living room window while it gathers material to mix with its saliva to help build its papery nest.

As well as having particularly keen senses, another trait of my autism is that I can’t filter out so-called ‘unnecessary’ information. I sense everything with equal intensity and importance. This can make me appear ‘lost’, confused or slow when I am in a new environment as I am taking absolutely everything in and trying to consciously work out which bits I should or shouldn’t be focusing on. It makes me a fantastic spotter of wildlife though! I will be the person who notices the Speckled Wood butterfly camouflaged on the woodland floor. My brain will not be fooled into thinking those patterns on the insect’s wings are part of the leafy detritus it is hiding against. My olfactory processing is so sophisticated I can tell whether the repugnant smell of rotting corpse is dead badger, dead deer, or simply a Stinkhorn mushroom.

Not everyone has a sensory processing system that works like mine does, but we can all ensure we take more notice of what is around us when we are out and about, and tune into our sensory experiences.

I have practiced Mindfulness for many years. It comes naturally to me, as I have always been someone who notices things.  Being Mindful means, you make a special effort to notice what’s happening in the present moment (in your mind, body and surroundings) – without judging anything. It has roots in Buddhism and meditation and there is good scientific evidence to prove its benefits. You don’t have to be spiritual, or have any particular beliefs, to try it. Mindfulness also sits well with me because my inability to filter things means I tend to be quite open-minded and non-judgmental anyway. I find Mindfulness particularly valuable because it reminds me to take a break from all the classifying and categorising and naming of the natural world, and just be in that moment, noticing it with my senses. Many people find practising Mindfulness is very good for their wellbeing. You can make time to meditate, or simply engage in parts of your normal daily routine in a mindful way.

For people starting out with a hobby like bird watching, or who want to develop more awareness and knowledge of the natural world, I would recommend taking a Mindful approach and just get out there, walk, and notice things. Don’t think about whether you recognise plants or animals, or if you can name them or know what they are. Nature can be enjoyed without any of these things. Try using each of your senses to notice what is happening around you.

Humans are currently said to have eight senses. The five we learned at school – smell, taste, touch, sight, and hearing. Vestibular – the sense of how gravity effects our body (our balance and awareness of spinning and jumping etc). Proprioception – knowing where the various parts of our body are in relation to each other. And finally, Interoception – the sense of knowing how we feel internally (our emotions and bodily functions like feeling hungry, tired or needing the toilet).

Interestingly, other animals have additional senses, and humans share the physiology that enable some of these senses too. Magnetoreception helps migrating birds find their way using the earth’s magnetic field. Thermoreception enables animals to detect heat and forms part of the infrared sensing systems found in some snakes and in vampire bats. Electroreception is well known in some sharks and other fish.

https://www.the-scientist.com/features/sensory-biology-around-the-animal-kingdom-32941

Here are some ways you may like to notice nature using your senses. I believe that with practice people can get more attuned to using their senses and it gives such an added layer of appreciation of our natural world:

Vision – stand still and notice how many different species you can see. Don’t worry about recognising them. You may be surprised at how many different living creatures you are sharing your space with at any given time.

Smell – notice a smell and move about until you can find the source of it, notice where it gets stronger or weaker. If you find something really smelly, like honeysuckle or even fox poo, focus on the aroma and then notice how far away from the source you can get while still smelling it.

Hearing – pause and notice how many different sounds there are. Let yourself notice each one. There may be sounds in the foreground like your breathing or footsteps, as well as sounds further away like birdsong, or a nearby road. Notice any background noise like the wind or water.

Taste – if you are confident at safely identifying wild food, then enjoy a blackberry or other fruit. Otherwise, practice with fruit and veg in your garden.

Touch – feel how cold the water in a stream is. Notice how things that look similar, may feel different. Find white clover and red clover in a field. Stroke the stalks of each and notice how one is hairy and one is smooth – you will forever be able to impress others with your knowledge of clover identification even when there are no coloured flowers to give the answer away!

Vestibular – close your eyes and notice whether you can sense if you are at sea level or much higher up.

Proprioception – bring your attention (without looking) to various parts of your body and see if you can notice where they are. Let the feel of the ground under your feet and the air against your skin help you notice where the respective parts of your body are. Realise you are part of the natural world.

Interoception – notice how you feel when you are in the natural world. Does it bring you joy, curiosity, peace?

Not only does following a technique like Mindfulness help us relax and connect with nature by disconnecting with the stresses and strains of our busy, daily lives, it helps us recognise how much is going on all around us all of the time. Once we start recognising this, it is more likely we will notice those elusive badgers, otters or whatever else we hope to spot. I have genuinely seen people walk past the most incredible creatures because they have been so focused on their phone, or their conversation, or lost in their own thoughts.

As well as practicing noticing things, its worth studying and learning all you can too. I bought my very first nature book whilst on a caravan holiday as a six or seven year-old. I remember going into the book shop in Williton, on the edge of the Quantock Hills and using my holiday pocket money to buy a copy of the Usborne Spotter’s Guide to Animals, Tracks and Signs. This is my favourite Spotter’s Guide because it opened so many doors for me. It wasn’t just a simple identification guide that helped name the species I was lucky enough to spot, it taught me the craft of getting up close with nature by understanding it.

Here are some of my favourite pages:

Gaining knowledge of how animals live, as well as what they look like, increases your chances of spotting them. Habitat, diet, and behaviour are all important parts of this. Understanding these helps identify animals and plants too. It increases the likelihood of seeing them when out and about. Consider my trip to Brean Down to watch my beloved rabbits. I knew that they would be out at dawn and dusk – I understood their behaviour. I knew there would be a warren on the isolated headland – I understood their preferred habitat. There was plenty of grass for them to eat – diet. Rabbit poo is decidedly easy too spot and correctly identify. My rabbit spotting trips are an obvious example of using knowledge to increase your chances of seeing a wild animal, but the principle is the same for other animals too. Though it provides no guarantee of a sighting!

Otters are a favourite animal of mine, but have frequently eluded me, despite my extensive knowledge. I now live within walking distance of otters and I’ve been out before dawn, I’ve set my camera trap up, I’ve even photographed their footprints, and smelt them. But my only local sighting was a chance encounter in a pond, rather than in the river where I know they live.

These tips that I’ve given about studying animals can act as a useful checklist for ensuring correct identification too. Sometimes we may spot a creature or plant that we are unfamiliar with. It is very easy for wishful thinking or past knowledge to affect our judgment when trying to identify it. My tip is to jot down exactly what you see. This is where another of the advantages of my autism comes in. Sometimes autistic people are labelled as great with the finer details but not good at seeing the bigger picture. Personally, I would disagree with this. I am very good at seeing the bigger picture – but I make it up out of all the tiny bits. This takes time and if you are after a quick answer before I’ve processed all the individual pieces into an overall scene, then you may wrongly assume I haven’t seen the bigger picture at all. My ability to appreciate every aspect of the world without judgment also comes into play – that lack of ability to filter information I described earlier. Autistic people are often “bottom-up thinkers”. The  American scientist, Temple Grandin describes:

“I’m good at trawling through the Internet through vast amounts of journal articles and then pick out what are the really important things. I then synthesize all of this resource down into one short paragraph… That’s something that I’m good at doing… I’m a bottom-up thinker—I take the details and put them together.” 

https://www.forbes.com/sites/quora/2017/07/05/research-shows-three-distinct-thought-styles-in-people-with-autism/#1d73aac1221e

Suppose you see a bird that you can’t name. Very often people will tell me they have seen a brown bird that was probably a type of sparrow. They hand me the bigger picture information, and this is usually followed by a time consuming and tricky process of me asking lots of questions about things they haven’t noticed. Whereas, a person who describes small details accurately, helps me identify the bird much quicker, even when there are key bits of information missing. A member of a Facebook wildlife group I set up, reported seeing a bird she didn’t recognise – and with only a handful of very specific details I could identify it instantly, show her a picture and have the id confirmed. She described it as thus: Cornish coast, size and shape of a tit, black head and wings, white collar and under wings and a reddish underside. It was in July. I pieced these bits of information together and knew what it was straight away.

Stonechat

I used the visual information and then checked off whether the following were likely: habitat – coast, and time of year – summer, location – South West England.

Checking the likelihood is always important – a Golden eagle in the skies above Wales is almost undoubtedly a buzzard.

A cuckoo seen in the winter is probably a sparrowhawk, like this one that took a blackbird down in my garden back in the winter of 2010. The cuckoo is a brood parasite that uses its resemblance to a sparrowhawk to frighten away the parent birds when it is hoping to lay its eggs in their nest in the spring.

When birds look very similar, like the curlew and whimbrel, you can use your knowledge and senses to help with id. If you listen, whimbrels make a rapid tittering of very short whistles, whereas a curlew’s call has a much more ringing tone and the male in displaying flight in spring has an almost liquid sounding song that crescendos into a bubbling trill. UK based whimbrels only breed in Northern Scotland and is only seen elsewhere in the country as a passage migrant in spring and autumn. It can take off and fly from a standing start, whereas a curlew will take a run at it. Although side by side, the beak length is a giveaway, it is unlikely you will ever have the luxury of seeing that, so understanding how they behave helps.

Curlew (from RSPB website)
Whimbrel (from RSPB website)

Of course, we must always be careful of how we interpret things and remember that all sorts of creatures can turn up in odd places – like the Tregaron golden eagle, or the bearded vulture currently roosting in the English Peak District. Vagrant, escapee, albino, and hybrid animals are frequently spotted. Whilst this can feel exciting for some bird watchers or nature spotters, the outcome is rarely positive for the animal – a raccoon dog (tanuki) was destroyed in Carmarthenshire only last week and I still feel distress at the hunt killing an albino stag in Somerset where I grew up.

https://www.facebook.com/Cambrian-Mountains-Eagle-Watch-1018718254978738/?ref=page_internal

On a lighter note, Bill Oddie tells a story about identifying a bird, that reminds me that even when using common sense and a bottom-up approach, you may still be surprised: Bill’s friend works for the RSPB and received a telephone call from a lady asking for help identifying a bird. He gleaned information about the bird’s buff colouring, and the bit of black and a bit of red on its head. This bird had been feeding at her bird table. The RSPB chap considered the information, matched it to the most likely suspects, and confidently told the lady it was a goldfinch. But she was not in agreement at all! He asked her to describe what the bird was doing, and she explained that it was stood by the bird table pecking at seed. He enquired whether it was able to reach up and get the seed, and the lady informed him that this large, heron shaped bird was actually stood next to the bird table and was leaning down pecking at the food. The bird was not a goldfinch – it was a crane!

Its not just the behaviour and appearance of the creatures and plants that we see that can help us identify them, the relationship between species is significant too. Take the stinkhorn mushroom and badgers for instance. I explore their relationship in another blog: https://offdowntherabbithole.org/2020/01/26/badgers-and-the-devils-fungus/

When I smell a stinkhorn, I look out for signs of a badger sett or other badger activity like a latrine as the two species are frequently found near each other. If I am on the Ceredigion coast looking out to sea for dolphins, I’ll scan the skies for feeding seabirds. These may indicate a shoal of fish and dolphins could be close behind them. I was listening to a dunnock outside the doctors’ surgery this week. This small, brown and grey bird had a most beautiful song that suddenly turned into a short staccato cheep-cheep-cheep. This type of noise is an alarm call used by lots of different small birds. I knew it wasn’t me that had alarmed it, we were both well aware of each other and keeping a safe distance.  So I looked to the sky, and lo and behold, a buzzard had started to circle and soar above the carpark.

The signs that animals use a local area may not be obvious, but if you keep noticing things with all your senses, then it is surprising what you may find. Here are some photos from my walks…

Lots of broken empty snail shells indicate this is somewhere a bird like a thrush or blackbird could come to smash open snails.
Lots of feathers on a log like this indicate a bird of prey comes here to pluck whatever it has caught to eat. This is in woodland so it is probably a sparrowhawk.
I knew where a fox lived so set my trail camera up. Capturing a still photo of it catching a bird in its mouth was a stroke of luck.

I recommend finding a local wildlife patch that you can visit and get to know at different times of the day; in different weathers; and across the seasons. If you use all your senses to notice your environment, I guarantee you will never ever get bored of what you find because no two visits will be the same. Take photos; learn what the plants are and have an educated guess at which butterflies and birds they may attract and see if you’re right! Learn all you can and enjoy going off down those internet rabbit holes researching whatever takes your fancy. As for equipment, buy the best you can afford. But remember, equipment is no substitute for noticing and learning. I deliberately leave my phone, binoculars and camera at home for at least one of my daily walks. I realised once when I felt disappointed because I didn’t have a camera to record something, that I was beginning to digress from what it is about the natural world that brings me such pleasure. Similarly, I do not need to name or classify every species I come across – I take an awesome pleasure in knowing that for that moment, it is just me noticing whatever it is, and that makes that moment special and never to be repeated.

Get out there and have some moments!

This is the first of my blogs to be featured in both my wildlife and my autism blogs. If you’d like to check out my other blog, please click below…

http://www.offdowntherabbithole.org