Category: Coronavirus

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5 minute read Autism Coronavirus interoception Uncategorized

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

Background:

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

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

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

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

Interoception – knowing I am ill:

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

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

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

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

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

Sensory Processing:

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

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

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

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

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

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

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

Conclusions:

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

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

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

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

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

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

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

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Autism Coronavirus

Reflections on the pandemic from one autistic perspective…

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:

https://www.autismwellbeing.org.uk/product-page/autism-wellbeing-covid-19-support-pack

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.

Red Kite Diary

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!

Categories
5 minute read Coronavirus

Autism and making sense of the “new normal”

My  son asked me to take him to Tesco’s as he hasn’t been out in  public since March. He wanted to know how social distancing works and how our local supermarket looks.

Supermarkets are my biggest sensory nightmare – in fact, when I lay awake in the middle of the night, filled with that particular anxiety that only visits you in the wee small hours; the scenario I play in my head usually escalates along the lines of:  “You know that crap thing you did yesterday at work Emma? – Well, you’ll probably lose your job. – And then you won’t be able to pay the mortgage. – And you’ll lose the house.  – And you’ll have to get a job in Tesco’s!!!” The ultimate peak of this catastrophising mountain that I create out of a very  insignificant molehill almost always includes me internally watching myself experiencing total sensory overload whilst forced to work in a supermarket.

So I mentally prepared myself; made sure I felt regulated and  able to cope with the sudden bombardment of sensory information that would hit me and my son; took a deep breath; and in we walked.

grocery cart with item

It was tough.

I patiently explained; repeatedly, that:

“No they are not deliberately being (insert an expletive of your choice here) – there are lots of reasons why people aren’t following  the arrows”

and

“Some people may be feeling overwhelmed like us – there’s lots to think about – all the arrows, and the 2m distancing and trying to find your shopping – they possibly don’t even realise they are going the wrong way and standing too close to us. I’m sure they’re not doing it to be rude”

But inside I shared my son’s exasperation and was glad that my focus was on making the shopping trip a learning experience for him. It helped me push my own frustration, confusion and fear to one side. Afterwards he said to me “Mummy, I’m glad we did it but I don’t think I’ll do it again”. Inside I thought exactly the same.

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If the world is a chaotic, overwhelming and confusing place in the “normal normal”, then the “new normal” is something else to behold if you are autistic. I have created lots of guidelines and rules to follow that  help me get by in day to day life. Stock responses to questions; routines for doing particular tasks; time for self-care and self-regulating; almost like an internal cognitive and sensory map of how everything should be. This helps me make sense of my world and function quite well. Without my “map” I would be stuck. Unfortunately, there is another way I can become unstuck, and that is when someone changes everything around. Suddenly my “map” is of the old normal and not the new one.

My brain and body want to operate in  the familiar – that is what they are programmed for, but the familiar has gone. Have you ever driven somewhere unfamiliar and relied on a Sat Nav? You experience a diversion due to roadworks or an accident, and suddenly you have to digress from your route and you realise that actually, you have no idea of where you are and how to get back on to your route and continue towards your destination. The Sat Nav keeps ordering you to do a U turn when possible and wants to keep sending you back to that closed bit of road you can’t go down. You can’t re-programme your Sat Nav because you are driving and you have to keep going forwards, not knowing  if you are getting nearer to, or further from your destination and as it is all so unfamiliar, there’s no way of finding out.

That sense of being lost happens to me frequently. If I didn’t programme my social “Sat Nav” that tells me how to interact with people appropriately I’d be constantly lost. If I didn’t “map” how places should look, smell and sound I’d have no idea if I was in the right place, doing the  right thing.

Looking for her ball

Other animals use “maps” too. My dog’s map is very definitely based on smells. She  recognises when other dogs have been on “her” favourite walk, and she often indicates to me where a fox may have crossed the track and is very helpful in identifying potential sites for my trail camera.

Migrating birds are able to sense the earth’s magnetic field and that’s how they can return directly to the same summer and  winter destinations every year without fail. Humans in fact have the same physiological adaptations as these birds, and I wonder whether that’s why some of us have a better sense of direction than others – perhaps the sense of magnetoreception that is found in some other animals is present in humans too?

All humans use our senses to help us know where we are in the world. But senses don’t work in isolation – they are closely linked to our memories and emotions.  Perhaps your child cried their eyes out when you washed their favourite cuddly toy because it didn’t smell right anymore. Maybe the taste, smell and texture of rice pudding takes you straight back to your school days and the dinner hall and all the associations you have with that.

Autistic people often have atypical sensory processing, which means we may need more or less sensory input than other people do. We can be hypersensitive and experience a normal television volume as deafeningly loud or we may be hyposensitive and not get dizzy from spinning round as fast as possible on a roundabout. This sensitivity varies from person to person, sense to sense, and moment to moment, and often becomes more extreme in times of stress, when adrenaline kicks in and starts triggering that fight, flight or freeze response we all get from time to time.

I expect places to smell, look and sound a particular way. I need them to, so that I know how to interact with them. When things change, I feel unsafe because the predictability and familiarity has gone. My map and rule book may as well be thrown away and I have nothing to replace them with. That is why I can become overwhelmed in certain situations – it’s not about disliking change, or needing routine because I am some type of control freak (and with a nod to any control freaks reading this – I personally can’t see why being a control freak is such a bad thing anyway!). I can only function by preplanning how to do things. Knowing what to expect is a great help with this. Whether that is planning a routine for my day, or having an agenda for a meeting in  advance, or rehearsing in my head how to handle a situation – it all helps me function and thrive. My sensory “map” helps too.

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Sense of sight.

I love that I spot the finer details that others miss – like the hairs on these newly unfurled beech leaves. I can proof-read written work quickly and accurately because mistakes jump out at me. Unfortunately, this also means I can’t ignore or tolerate things that are out of place. Someone else rearranging my things very slightly, does not annoy me because they look a little bit different. It annoys me because they look completely and utterly different and like a totally different thing that I have to learn about from scratch all over again! In these Covid 19 times – if you wear a face mask then you don’t look like you and I will probably not recognise you. I am the person who thought she had a new colleague at work and went through the painful small talk and introductions process a second time with someone I had already done it with – they had just had a new haircut that’s all!!!

Smell.

This is the sense I am currently struggling with. It is a sense that connects straight to our emotions. People smell different at the moment and this is unsettling. They are leading different lifestyles (maybe they are working from home, have changed their diet, are exercising differently and have different stress and other hormones raging through their bodies). They smell more strongly to me because I’ve got used to avoiding them! This double whammy of ‘different’ and ‘stronger smelling’ makes going out feel very overwhelming. When people smoke, and wear perfume/aftershave then it all becomes too much to process and I feel myself switching off in order to cope or becoming so overwhelmed I can’t think or talk in words.

Hearing.

Although my house is rarely quiet – I have a teenage son who enjoys making a lot of noise at times. I can control the amount of noise coming in to my ears and brain, to some degree. I can wear my noise cancelling headphones and the noise in my house is fairly predictable – although the thunderstorm the other night made me almost jump out of bed! In town, the noise comes at me from all angles. Sudden alarms; shouting, laughing and talking; traffic noise and so on. The cacophony of noise is like a solid wall of sound that hits me full on and I can’t distinguish the bits I need to listen to.

My other senses are also affected by the “new normal” and its not a specifically autism related issue. Plenty of people are finding car journeys are making their children feel travel sick – normally they are fine, but they’ve got out of the habit of traveling in a moving vehicle. Many of us are enjoying the peace and quiet; we’re finding the reduction in social pressures has been a relief and a break from the high intensity lives we often lead.

Many of us will find the lifting of restrictions challenging and they will take some getting used to. All of us have different sensory preferences – regardless of our neurology. Some of us will find the fluorescent lights in shops way too bright and distressing when we start visiting towns again. Some of us will feel anxious when travelling because everyone seems to be driving so fast. On top of this are the social distancing rules – and the way they change, and some people disregard them. I have made my own rules for coping with this:

  • Safety First! If someone comes too close to you in a shop, it may be best to move away from them even if you were there first. They may not have noticed how close they were, they may have difficulty judging distances, or they may not care. What is important is that you are as safe as possible.
  • It is OK to feel annoyed. It is reasonable to expect other people to follow rules.

I am taking this step by step. The sensory processing aspect is difficult for me – I’m dreading the day we are allowed to hug people again – what if someone wants to hug me and I flinch? What if they touch my bare skin, and they smell of perfume and I can feel their breath?!!! I don’t want it to be noisy and bright and smelly. I want it to be the same and predictable and familiar and I think I’ll stay in and just go on the internet and write, and message my friends from a safe distance! I can’t predict how this “new normal” will look and I’m out of practice with doing people things. When I do interact with people I remember why I find it tough – they overstimulate my senses, and confuse my brain with their inconsistent rules, they have hidden agendas that I don’t intuitively understand and I am reminded at how I’m just not very good at being a normal person! After spending time away from my own little world at work or visiting a shop, I am exhausted.

Hope…

But I will continue with the self-care and show myself the same compassion I have used towards myself throughout lockdown. I am not alone in feeling anxious and overwhelmed about this. I am relieved the restrictions are being lifted little by little. I can get used to the “new normal” little by little too.

The kindness and positivity seen in society at the start of lockdown has appeared to shift into anger and disregard for others. I hope it is just because people are fed up. Maybe everyone is scared by the changes? As lockdown eases, I am glad that I have coped and got this far. The world is going through unprecedented times and who knows what will happen next. I have learned so much about myself and how resilient I am and what I need to do to take best care of myself and family.

The bits of lockdown that I have most enjoyed, I will continue to do. My Saturday morning baking, my walks in the woods, the friends I message and spend time online with. I will continue to write the blog that I started in lockdown, and I will continue with being kind to myself and others.

Maple, pecan and apple Bakewell – my invention this morning!

Categories
Coronavirus

Reflecting on coping with the anxiety of coronavirus – 3 months on…

So we didn’t run out of toilet paper after all then!

I wrote my very first blog about autism 14 weeks ago in response to the approaching restrictions that would be needed because of Covid-19. It was quickly picked up by a variety of autism organisations and groups, and I watched what was a speedily written and personal reflection on the situation, quickly become a recommended read: https://undercoverautism.wordpress.com/coping-with-the-anxiety-of-coronavirus/

I recognised how my autism could be an advantage for coping with the reduced socialising, the working from home, and for coping with high levels of daily anxiety and uncertainty – all things I am skilled in managing everyday. I also recognised that the changes to my lifestyle as a result of coronavirus might feel scary, the new rules may be difficult to interpret and understand, and that everything I had learned off by heart in order to cope with the “normal” world may have to be relearned in order to cope with the pandemic situation.

It’s now midsummer and I have continued writing blogs and have achieved on average one a week throughout this time period – I have had a productive lockdown in terms of written output and I am humbled, shocked and delighted at how widely read my writing is. Not just my autism and wildlife blogs, but my local newspaper column, some recent memories I’ve shared for a wildlife trust project, and my employed work too. This past week I have seen an article published in the British Institute of Learning Disabilities Good Autism Practice Journal and I’ve helped produce a support pack for families affected by autism in my local area in West Wales. This is beginning to sound like a job application or a CV – it’s not meant to be! It demonstrates how useful it is to have a hobby and an outlet for expressing myself. I’ll come back to this later in my blog.

Like everyone else, we are beginning to consider what a “new normal” may look like and I need to prepare for that too.

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Back in March I thought about how important it would be for me and my family to develop a routine that suited us, and replaced our previous routines. I’ve described why this is important for us and how we did it in some of my other blogs, but I’ll describe it here as briefly as possible: My world feels quite chaotic because my brain processes information (including sensory information) in an unfiltered and non-discriminatory way. This means that I need to impose my own sense of order, predictability, and my own routines and ways of categorising, understanding and coping with this information. If I don’t, I become completely overloaded and overwhelmed and unable to function.

At the start of lockdown I saw lots of posts on Facebook about how people were going to learn new skills, do up their homes and gardens, teach their children, and take up hobbies. I loved that it was ok to have hobbies again! When I was growing up it was far more normal to have hobbies and it was even ok to have slightly unusual, obscure or nerdy interests. There is a great deal of satisfaction that can be gained from having a hobby that distracts you, brings you respite from day to day life and enables you to immerse yourself in it to the exclusion of everything else. You don’t even need to be good at it to enjoy it! Many autistic people find their interests can be all-consuming and whilst this may bring them immense personal pleasure, it can appear single-minded, obsessive or even boring to other people. Tough, I say. It’s just how we do things.

However…. I am aware that as well having the valuable skill of being able to hyper focus on things that interest me, I can pursue something single-mindedly in pursuit of truth or deeper understanding, to the exclusion of other people’s needs or my own wellbeing. For me, this is particularly likely to happen at times of stress. The chaotic world I normally live in has suddenly become even more chaotic as a result of Covid19, and I can feel my need for logic, order, understanding and, “for something to just be the fucking same as it was last week!!!” has increased massively. I expected this and set myself 3 rules at the start of lockdown. Here they are:

  • I will brush my hair every day even if I don’t want to and even if I’m not going anywhere. (I dislike brushing my hair because of the way it feels. I often rub the back of my head on things without noticing and have had a lifelong tendency to develop a big knotted mass of hair on the back of my head. This makes ‘horrible hairbrushing’ even horrible-er!)
  • I will have walks every day. (This is essential for regulating me and for maintaining a routine)
  • I will keep my interests broad not deep during the Covid19 pandemic. I will not pursue anything related to politics, health or inequality as an interest at the moment. (The last thing I need to do at times of stress is go off on one trying to change the world when I quite clearly can’t)

That’s it. Not particularly difficult rules to follow and I have been quite successful. The only rule I broke was the one about walking. Unfortunately I was very unwell and unable to get out of bed for a week. I may or may not have had coronavirus but I needed to visit the hospital and was discharged with a letter stating I had possible Covid19. This was in March and tests were only being offered to inpatients. I was treated in the Covid treatment centre which was a big tent in the local hospital grounds. It was the worse sensory experience I have had in a very long time. It was bright, white, incredibly noisy with fans and bleeping machines, and no one acted or looked like a doctor or nurse normally does. I also felt quite unwell and thought I might die a couple of times. So in true “me” style I wrote a blog:

https://undercoverautism.wordpress.com/2020/03/28/why-there-has-never-been-a-better-time-for-me-to-be-autistic-and-for-you-to-learn-what-its-like/

I needed people to understand how the world is for me just in case I died. I also wrote an additional nature column for my local newspaper about seeing the natural beauty in the world and why we should be kind to each other. I felt I needed to leave no unfinished business, just in case. Then I tried writing about Red Kites – I’ve been following a breeding pair in a blog diary. I couldn’t finish that blog and ended up in hospital. That’s how I knew I was really ill. I never like to leave things unfinished.

Fortunately I recovered and was able to discuss some of this with a lovely learning disability health liaison nurse who worked with her colleagues to develop easy read documents and a film about the hospital experience at the moment. I also wrote some tips for autism wellbeing that we shared so that people would know that it could be useful to take things like sunglasses, noise-cancelling headphones and other objects that they find useful for regulating their senses if they had to go to hospital too.

I am not fully recovered and have days where my chest is still tight, my breathing is difficult and my cough returns. I also experience tiredness like you could not believe. For me to stay indoors and not have a few walks every day is almost unheard of. I used my time in bed that week to learn a new skill – making an app. And to overcome a lifelong challenge. This is quite astounding, but needs must, and I was about to withdraw my PhD application just because of my phobia of being on camera. I’ve blogged about this too . With the help of a friend I was able to get myself from not ever imagining I could be on a video call, to making several training films where not only do I show part of my body and speak, but it is recorded and shared too! I now recognise the image in photos and mirrors as “me”. Something has clicked inside of me and I have a sense of recognising myself and a connectedness between my body and my mind. This has been a big achievement and essential in some ways – how could I have got through lockdown as a working person, without being able to take part in a conference call?!

Working from home suits me and my role is in the background of all the dedicated key workers out there supporting the most vulnerable people in our society in their homes and care settings. My job has enabled me to neatly compartmentalise my time spent thinking about Covid19 into my working hours. I have been involved in risk assessing the workplace and keeping abreast of the pandemic situation and communicating about it. This has helped me control the urge to become an expert on coronavirus – I watched many people at the start of the pandemic get caught up in learning all they could about the virus. I’m the same – I process and accept things by analysing and understanding them. I can quickly assimilate masses of information and use that to work out what should happen and how it all works. The problem with this very logic based approach is it doesn’t integrate smoothly with the illogical world we live in. I frequently find myself desperately seeking clarity in situations where there is none to be found. I NEED things to have a plausible explanation and be accurate and “right”, and it frustrates and frightens me when they are not. Like I said before, my “normal” world may feel more chaotic than some other peoples because of my sensory processing and this new situation we are in has massively increased my stress and need for order.

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I have observed people’s responses to the pandemic and felt astounded at what appears to me to be illogical responses. I have a lifetime of feeling like the character of the little boy in the Hans Christian Anderson story ‘The Emperor’s New Clothes”. Why am I the only person calling out the nonsense before my eyes?!!! I felt confused when people started saying the risks of Covid19 were reduced – even though the figures said otherwise. Lots of people headed for the beach and seemed to behave as if wishful thinking and a sunny day would make them immune to the virus. I have felt frustrated by politics – but not too frustrated. Politics is still predictably dishonest, and full of hidden agendas, power play and unpleasantness – there is always a sense of reassurance in predictability – even unpleasant predictability! I have felt saddened when people have got caught up in arguing with each other about important causes – unable to consider each other’s viewpoints, truly listen to each other and act humanely. But each time, I have had to take a step back and pause and consider to myself: “What is really going on here for me?”, “Am I looking for clarity where there is none?”, “Is this something I can change or is this something for later on?”, “Am I focusing everything on this subject and forgetting that we are living in unprecedented times?”.

My passion for things being “just right” drives me, and the strongest emotion I ever feel in life is the one that I get when people are deliberately dishonest, or misinterpret, or misrepresent me. It rocks my world, unnerves me and makes feel very, very unsafe. In my world, sounds sound different at different times; colours change colour; faces distort; smells fluctuate; my own body comes in and out of focus to the point where I sometimes can’t feel it. People talk in riddles as far as I am concerned. They don’t say what they mean, they are sarcastic and they expect me to ‘just know’ how it all works. My world has never been consistent and I’ve got used to that. When someone deliberately mucks with it I feel very unstable and unsafe. I need to put things right. If a friend has a problem I feel driven to solve it – I have learned that simply listening can be fine too. When I see someone on social media sharing racist propaganda without realising, I feel driven to correct them – but I don’t because no one joins Facebook to become educated. It is an internal battle to keep my mouth shut or my fingers off my keyboard sometimes.

My need for honesty pushes me towards correcting people, but I know this is perceived negatively. I won’t mask my autism by hiding my beliefs and values or acting in a way that is untrue to myself, but I have learned that sometimes it is better to preserve my wellbeing, choose my battles and recognise that other people are different to me. Not only in what they rightly or wrongly believe, but in what matters to them and what their values are too. Some people are not flexible, they are unwilling to see the truth and my need for order and truth does not matter to them one bit. I am always amazed that other people don’t value truth, openness and straight talking in the way that I do. But we are fundamentally different – and that means that they are unlikely to be playing the game of life by the same rules as me! This has been a tough lesson to learn. Much is said about ‘theory of mind’ and empathy and so on with regards to autistic people . There is nothing wrong with autistic people’s empathy in my opinion. I know lots of autistic people and we “get” each other. I totally see why they do things – because it’s why I do things too. I don’t find my autistic friends openness about what they think of me rude, over-familiar or anything other than refreshingly honest and I wish more people were like that. I am well aware that you may think something different to what I think and that comes from our different baackgrounds, neurologies, genetics and so on. I have learned as much as I can about people so that they feel more predictable to me.

The reason that I don’t “get” why a lot of non-autistic people do things and why this isn’t intuitive to me is because I am running on a completely different operating system to them. I function pretty well but I work differently. Think of your mobile phone – lets say it runs on android. Mine is an apple. They both make calls, they both tell the time, they have similar apps. Our phones can do the same things, and apple and android systems have various quirks, and advantages over each other but are still phones at the end of the day. But try running an andriod app on your iPhone. It will not function – ever. They are not the same – an android app will never work on an apple phone. And that is the world I live in. I am not somehow a lesser version of normal, or defective or broken. I don’t even aspire to be “normal”. I don’t need to be fixed, or helped to become more sociable, or more able to suppress the bits of me that are different. I don’t actually want all that. What I want is for non-autistic people to put the same amount of effort into understanding me that I have put into understanding them.

My writing has given me an outlet for sharing my insights and will hopefully enable people who want to understand how autism is for me, and how it may be for some other autistic people, to learn and reflect. I feel vindicated in some ways because I feel like I have a lifetime of not being listened to or heard and I finally have a voice. It is a hobby that can be used with my other hobbies and my passion for the natural world is shared in my wildlife blog http://www.offdowntherabbithole.org

Watching the seasons change reminds me that change is part of nature. It is commonly said that autistic people don’t like change. For me that is not true – and to be pedantic for a moment, I’d say I love change but find unpredictability, lack of clarity, and disorder very unsettling.

We planted cress a few times during lockdown and loved seeing how it visibly grew day by day. We have seen the blue tits build a nest in a hole in the apple tree, visit the nest with food and then fledglings leave and make their way into the wider world. The apple tree itself has grown leaves, blossomed and now has tiny green fruit that are starting to develop a red blush, since I wrote my first blog. We ate carrots for dinner earlier that were barely seedlings when the pandemic was announced. The woodland where I walk nearly every day, was bathed in spring sunlight at the start of the restrictions. On my permitted one hour daily walk I saw the wood anemones bloom, followed by the bluebells and orchids. The first beech leaves unfurled with their vivid, acidic green colour and now they, and the oak and ash canopy have shaded the woodland floor which is green again in the absence of flowers.

The natural world is a place where my senses are most regulated – nothing is really jarring, nauseating or frightening in the way it is in the man-made world. I have enjoyed avoiding towns, people and crowds and felt quite sick earlier when I caught a waft of diesel fumes from the increased number of vehicles using our road. The thought of going out more and being exposed to more sensory input is anxiety producing for me. I will need to take it slowly and let my brain and senses readjust to the increased processing that will be involved. I am finding seeing people wearing face coverings very distressing and I am only able to wear certain masks myself. I have used my insights to prepare some information to help people. This has been well received and I know this distress is shared across many of the autistic community and lots of other people too. I don’t use public transport and I am confident in saying that I am exempt from wearing a face covering – but I don’t like seeing other people in them and I don’t want to justify or explain myself either.

The sight of face coverings, puts me in a state of high anxiety before I’ve even factored in the additional sensory processing. On top of this comes all the new rules. I am already struggling. Some people are sticking to the 2m safe distance whereas others aren’t. Shops and other buildings have lots of signs up and I find lots of signs really disorientating and I can’t read them quickly enough to work out what to do and that annoys people. The rules are different in every building and the unwritten rules are different too. In some places it seems less important to follow the arrows or stand in a queue or so on. It totally screws my mind and I can’t see it getting any easier and no one can help me because we’re all experiencing this together and learning as we go along. The stay at home phase was great – I’d like to stay at home forever. This next phase worries me, the rules are changing fast and they don’t seem logical. I need more clarity but recognise there may not be any. I feel compelled to seek clarity elsewhere, where I may have some hope of getting it – and following my diary rigidly, or organising my digital photos in categories, or repeatedly doing things that soothe me, all help but won’t make the pandemic make more sense.

I can feel myself appearing to be “more autistic”. Of course this is nonsense. I can no more become more autistic than I can become more heterosexual, or more female. I am not regressing, I am responding in a perfectly natural way to a perfectly extraordinary experience. I am also needing a bit of space – I love my family but spending so much time together can feel restrictive at times. We have rearranged our son’s bedroom to give him more space and we’ve made a point of making weekends special again. We had started off by clearly differentiating between weekdays and weekends but over time, every day got a bit samey. Yesterday we walked in the woods and our son swam in the river and we ate cake and drank from our flasks of coffee. It was a joy to be able to go in the car to a nearby favourite spot and walk and feel like we used to before the pandemic started.

I have grown as a person through this situation. I’ve recognised the value of my autism and the value of sharing my insights. Like most people, there are times I have thrived and times I have struggled. I began by sharing how productive I have been. There have been other times where simply getting dressed, making a drink and remembering how to talk have been monumental tasks to achieve. I don’t like it at the moment but it will pass. I don’t want my old normal back and I’m unsure of the new normal. I have learned lots about myself, and about others. I’ve learned how to make an app from scratch and watched myself on film. My love of the natural world has kept me going and my writing has kept me focused. My son, my husband and I have annoyed each other, loved each other, laughed together, and stuck together through this. I have unfinished business that needs to be completed and it seems fitting on this day (Father’s day in the UK) that this blog is dedicated to my dad, and I look forward to when he is able to rest in peace after restrictions are lifted and I can take his ashes back to the forest where they truly belong.

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