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 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.
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.
In recent weeks, the largest ever UK autism research project, Spectrum 10k, was paused and an apology given to Autistic people, their families and charities that support them. The ubiquitous Simon Baron-Cohen, endorsed by several celebrities had declared how this research would investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families. Questionnaires and saliva DNA samples were to be used to learn how different genes are associated with autism and co-occurring health conditions.
Who wouldn’t support research that has the potential to reduce some of the health and wellbeing inequalities faced by Autistic people which, after all, are numerous and considerable?
Well…. A large proportion of the Autistic community don’t support the Spectrum 10K research in fact! A Twitter poll #AskingAutistics posed the question “What’s your view on Spectrum 10k?” The 582 respondents voted:
Not Sure 17%
Social media pages came alive with comments, questions, anger, fear, and objections about the way that so many autism research projects are undertaken. However, Autistic voices were repeatedly “shushed” and valid concerns about eugenics were mislabelled as conspiracy theories.
It may be helpful to understand a little about autism, about autism research, and about how autism is perceived.
Autism is a neurological variation, a naturally occurring expression of human neurodiversity. Autism is lifelong, and Autistic people can be of any gender or race and have a wide range of cognitive abilities. Autistic people almost always experience sensory information differently to non-autistic people. This means they process the world very differently to non-autistic people and subsequently have a different way of being in the world. I have spent 25 years working in the field of social care, and I am currently a director of Autism Wellbeing, a small non-profit organisation. I am undertaking PhD research about perceptions of autism, and my previous postgraduate research was about the effectiveness of mental health outcomes monitoring tools.
A review of autism research funding in the UK was carried out in 2016 by Autistica – the UK’s national autism research charity. The most common research areas were about the biology of autism; its causes; and autism treatments. Spending on autism research had trebled between 2013 and 2016.
Yet despite all this research, autistic people experience poor outcomes compared to their non-autistic peers in a range of life domains. Knowing about autism doesn’t necessarily improve outcomes for autistic people. When it comes to mental health, autistic people are more likely to die by suicide, are more likely to self-harm, and are more likely to experience mental illness than non-autistic people. Autistic people face barriers to seeking psychiatric treatment and as I discovered in my own experience as an Autistic person, misdiagnosis can often occur, and autism can be missed – with devastating effects.
Key findings of a report into UK autism research highlighted that academics perceive themselves to be engaged with the broader autism community, but this perception is not shared by other stakeholders, most notably autistic people and their families. Autistic people see the challenges of autism as societal and attitudinal and not about ‘curing autism’.
Autistica led a James Lind Alliance Priority Setting Partnership, that asked over 1,000 people for their top questions for autism research. These were then ranked in a final workshop attended by autistic people, parents, and professionals. The number one priority was about mental health and autism. Nowhere within the top ten was any mention of understanding the genetics or biology of autism.
The need for a different approach to autism research:
Very few studies have been completed about perceptions of autism, or attitudes towards autistic people. Research seems centred on fixing autistic people rather than improving society. Like many other Autistic people, the challenges I face are better explained by the social model of disability than the medical model. I do not feel that a better understanding of my genetics will reduce the barriers I face every day as an Autistic person.
My PhD research sits within the field of social science and my presentation recently won the WISERD PhD poster competition: “I feel like a square peg in a round hole: How is autism perceived and does it matter? – An exploratory case study into perceptions of autism within a Community Mental Health Team”.
In academic literature there is a disconnect between autism as a condition and being autistic as an experience. Autism is seen as a medical disorder and so attracts a disproportionate amount of research interest and funding – you could even say it is a research topic that keeps on giving. As an essentially narrative condition diagnosed on the subjective opinion of clinicians, autism is susceptible to ceaseless and sustained interpretation and reinterpretation. According to the prevailing science based, medical, cognitive interpretation of autism as involving a lack of theory of mind, autistic experience itself is a “black box” and hence not susceptible to investigation, let alone interpretation. Perhaps this relieves researchers of any felt obligation to interrogate either their own perceptions of autism/autistic experience or anybody else’s.
My PhD research question took a while to materialise. I considered a number of research topics, all related to autism; and time and time again, I kept coming back to the same concept. No matter how much we know “about” autism – Autistic people still experience poor outcomes. Perhaps the issue is not about something that is “wrong” with Autistic people, but something that is wrong with the way Autistic people are perceived and consequently treated. As my research question materialised, I realised that what was missing from the research was not “what is autism?” or “which gene causes autism?” but “how is autism perceived?” I believe that by exploring this area of research, outcomes for autistic people may be improved.
I believe it is time for researchers to collaborate with Autistic people and together take a look outside of the bodies and brains of Autistic people and into society, to see how improvements can be made.
I was prompted to write my first blog when I saw the frantic rush by shoppers to buy toilet roll. It triggered my own anxiety about what would happen if panic buying resulted in me not being able to buy the very specific brands of food that I must have.
The world did not run out of toilet roll, pasta, crunchy nut cornflakes or any other items and my anxieties about shortages were unfounded.
However – my distinct lack of anxiety about the potential impact of coronavirus on my health – I believed I would be at low risk due to being healthy and unsociable – was proven completely wrong.
I did become ill in the weeks following writing my original blog and needed to visit the hospital due to my continuous cough and breathing difficulties. This hospital visit was unlike any hospital visit I had made before. Some positives came from it and I was able to share my personal experience of sensory distress and confusion with the health board who were developing some fantastic resources for people who have a learning disability or are autistic. I’m glad I could use that traumatic experience to help others.
I worked as a key worker until late August and also in my role within Autism Wellbeing. We began producing information for people affected by autism. Tips for autistic people; their families; carers; and colleagues; covering everything from the language used in the pandemic; masks and PPE; coping with change; self-care; returning to work and school; and coping with the “New Normal”.
Our popular Covid-19 Resource pack has been widely shared and downloaded. You can get a free copy by following this link:
In fact, we were nominated for and awarded as “Local Lockdown Legends” for the work we are doing online and in our Facebook peer support groups for autistic adults and for parents/carers. (And by the way; many group members are in both groups).
At home we focused on our son. He was already home educated and I watched how parents of school educated kids tried to juggle working from home with providing a full time education. An impossible task. Collectively across society, we all did our best and realised there were many benefits to the computer screens and games consoles we often feel as parents are ‘taking over’ our children’s lives. The ability to chat online and out loud to friends, to play games together and stay in touch from the privacy of our own homes is invaluable and has been a life saver for many people. Here is a personal post I shared on Facebook as the first UK lockdown was announced. And a follow up 2 months later:
We are still learning about what is important to us. We have found that routines work well – and letting each family member set the routines that are most important to them is even better. I tend to bake a cake each weekend, we have pizza and a film on a Saturday – we have found that making the weekends special is important for us so we don’t feel lost in a world where every day feels like Sunday.
My initial fear – in fact it was more like a recurring bad dream, was of the pandemic ending abruptly and the streets being filled with people making lots of noise and desperate to hug me – imagining this filled me with terror. Of course, this is not how it has panned out.
I am so lucky, I live in a beautiful place. The natural world has been my escape, my place of solace, my predictably changing best friend throughout the pandemic. I have watched the bare branches of the beech and oak trees in my local woods fill with leaves until the woods became darker under the shady green canopy. And now, they are almost bare again under the steel-grey autumn sky. I have seen wood anemones make way for bluebell and the foxgloves. The Red kite I began observing on March 13th probably nested and raised chicks – but I’ll never know – my blog diary was never finished due to travel restrictions. I satisfied myself with writing about the history of Red kites in Wales instead. Here’s a link to my wildlife blog below. I also continued to write a nature column for my local newspaper as well as running my wildlife Facebook group.
Our family also faced challenges. Being unable to visit a parent who was rushed into hospital on two occasions during lockdown – not even being able to find out what was happening due to confidentiality rules, was upsetting and frustrating and left us feeling helpless. Not being able to meet as a family to lay another family member’s ashes to rest and pay our last respects was tough too. The uncertainties of the pandemic were topped off with the uncertainties of family life.
And on top of this my husband and I have post viral fatigue. Long Covid is what people are commonly calling it. I have had swollen joints, shingles, urine infections, breathing difficulties, and tiredness like you cannot believe. I have barely enough energy to keep myself feeling regulated and my sensory processing has swung from hearing every noise, finding daylight painful, becoming nauseated by any smell – to – not feeling a thing, not knowing where my bruises have come from or finding my hair is matted from where I have rocked unknowingly and continuously all night long in my sleep.
I have felt confused, scared and bewildered. I initially felt annoyed that people were clapping for the NHS – mainly because I like peace and quiet and the sound of my neighbours beating the hell out of saucepans every Thursday evening left my body activated and ready for flight, fright or freeze from the moment I got out of bed on a Thursday morning. I now wish that society was still coming together in this way – the sense of us all being “in it together” has diminished. People are calling other people out for perceived breaches of lockdown and are jumping on bandwagons they had no interest in before. I watched friends throw every ounce of their energy into campaigning about “Black Lives Matter” – my sentiments are with them all the way but it felt like this and other topics were being used as a distraction from the boredom, worry and upheaval of the pandemic; and I watched with shock, bewilderment and disappointment as I saw other friends demonstrate the most ill thought out and racist behaviour ever. I witnessed parts of society get fed up with staying in when the sun came out, so off they headed for the beaches and countryside. It felt like all the world was out of control all around me. It looked to me as if everyone was on the verge of total emotional overwhelm – people I view as level headed were sharing memes and fake news without checking for facts first – pressing “Like” or “Share” because it gave them a shot of something that momentarily eased whatever negative feelings the pandemic created in their bodies.
And I kept baking my cakes on a weekend, kept working, kept walking every day I could. Kept up my self-care and kept going and going and going. My ability to keep doing the same thing again and again in the same way has kept me focused and strong.
And some days I felt peace and at one with the world – I loved the simplicity, the lack of socialising, the space – and the quiet. And on other days I felt stifled, trapped and unable to find any peace – either internally or outside my body. Our one living room felt way too small for a family and I would have given anything for the endless questions about when can my son see his friends again – or the rants about what the government were or weren’t doing – or the continual noise and movement that inevitably comes with living as part of any family – to just stop!
I wondered whether autistic people would fare better than others because we are so skilled at having to cope with uncertainties. We rely on routines, structures, and rules, and are famous for preferring our own company. I wrote about how there was no better time to be an autistic person. In fact, I have a secret to share… Although my autism was never hidden, I had never articulated to the wider world what it was like for me. So I decided to write a blog because I knew I was very unwell – I wondered if I would die from coronavirus and I rushed this out so at least people would know what life was like for me if I did die. I also wrote an article for the local paper about finding peace in nature and calling for humankind to be compassionate towards each other.
Did I do better than anyone else because I’m autistic? Well, firstly it’s not a competition. We all need to play to our strengths in order to thrive in life. My strengths are by their nature autistic. Unfortunately, the medical model of autism describes them in terms of deficits and what is “wrong” with me. My need for consistency and routine, and my unique way of experiencing the world through my different sensory processing system are viewed as symptoms of a disorder. Does being autistic make the pandemic easier to cope with for me? Yes. Would it make it easier to cope with for you? Probably not. We each need to utilise the coping strategies that work best for us. But of course, there is scope to learn from each other, regardless of our neurologies…
Many of us have found we have needed to work from home during the pandemic – and many employers have embraced this and seen the benefits. Some disabled people have been requesting to work from home for years, whether due to accessibility issues that affect mobility; or accessibility issues around transport, communication and the sensory aspects of workplaces. Lets hope that those people who work better this way can continue working from home. I have been home based for many years and was able to give tips to other working people about planning your day; taking breaks; effective communication; and work/home balance.
No discussion about the workplace would be complete without mentioning video calls. I went from being someone who could not even look at a photograph of herself; to being an active participant (if a bit overwhelmed and reluctant at times!) of conference calls; to being featured in films and training videos. It was a Herculean achievement, reached by taking many painful, brave and challenging small steps. The world of conference calls highlighted many of the challenges autistic people face with communication. Not just the act of being on screen and talking to people – that can feel bad enough! But the technological issues that occur during a video call – these feel familiar to me in my face-to-face interactions:
- The lag between speech and mouth movements that makes verbal and non-verbal communication slightly out of synch – that’s how my brain processes communication ordinarily. I put a huge amount of effort into matching up facial expressions, body language and speech so that it makes sense to me.
- The background noises are amplified on a video call – the scrape of chairs, tapping of keyboard keys, coughs, hiccups and slurping tea – these all sound at the same volume and intensity. Welcome to my usual world of sensory processing where nothing gets filtered!
- The lack of spatial clues means you can’t tell where those “mmmm’s”, “uh-huh’s” and other meta-communication is coming from. You may miss the shaking head of disagreement from the person off-camera because your focus is on the person who is speaking. There is soooo much to take in. No wonder we get zoom fatigue!
Did I take up any new hobbies? No
Did I get fit? No….Sorry Joe Wicks…
Did I learn anything about myself, my family and the wider world? Yes, loads.
Do I feel hopeful?
I have fluctuated between feeling hopeful and feeling despair. I viewed the initial “togertherness” positively: the sense of communities supporting each other, clapping together, helping each other out. I remember a video doing the rounds on social media back in the early summer that spread a message of hope and how we’d learn and become a better society because of the pandemic. I cynically thought to myself, that we probably wouldn’t.
I watched the way the media used language, imagery, metaphors and colours to emphasise whatever mood they wanted to portray. I made accurate predictions of the government’s next moves – I’m no conspiracy theorist, or political expert – just an accomplished spotter of patterns!
I have seen people ride by on a rollercoaster of emotions, I have occasionally hopped on and off myself! A “coronacoaster” as one meme describes it.
Coming out of a 17 day Welsh lockdown today, having been on tenterhooks over the US election, fatigued by post viral illness and worried about my family and what the future holds; I could easily feel hopeless – I do feel hopeless. And that’s OK. This pandemic really sucks sometimes!
But when I reflect and look back at the positives that have only happened because I have been alive on this planet in this exact period of time, then yes, I do have hope…
- I have gained friends
- I made a flute out of a carrot
- I have started a PhD
- I have swung on rope swings, gone wild swimming in rivers and ridden my motorbike
- I am working with colleagues who value me
- I have overcome challenges I thought I’d never face
- Covid didn’t kill me
- I have written…and written… Autism blogs, wildlife blogs, nature columns, information sheets, contributions to a paper on Sensory Trauma, contributions to ‘Neuroclastic’, Facebook groups and pages, and scene 1 of a play- my first ever work of fiction.
- And on one occasion I chased a pig and got over 30,000 social media views for my efforts!
My son started playing an online game called Clash of Clans, about two years ago. He had his first mobile phone and he and a few mates downloaded it.
We had a good talk about online safety and set about learning how to “chat” with other players. In fact I googled a list of text speak and abbreviations so we could decipher all the BRBR’s, CoC’s, and TIA’s.
But the chatting bit wasn’t for us and he convinced me to download the game too and join his clan. I thought it was a good idea so I could a) keep an eye on his safety and b) ‘get down with the kids’ – LOL – and find out what the attraction was with gaming.
Then there was c). Unintentionally I found I quite enjoyed playing, and it provided lots of opportunities for mother and teenage son chats about life, the universe and everything.
The game involves starting from scratch with a base that you can gradually build up with troops of different types, and defenses and resources. You take part in battles and as you win more loot and gain more experience you can upgrade your base and all its various archers, giants, wizards and dragons. You win more money and increase your magical abilities. You can spend your resources however you wish and shape your base accordingly.
And being a game, once you have accumulated enough experience and resources, you can level up. And with that comes tougher opponents to battle and higher stakes.
It’s very much like life. My son mocks the players he refers to as “rushed”. The ones who use real life money to upgrade their weapons while they are still novices and learning their battle skills. They are easy opponents to beat. Their bases look flashy with all the newest kit, yet weak and simple to penetrate and win an easy victory.
It’s a strategy game too – just like life. You can run at your enemy willy nilly, throwing your best bombs and shooting your best arrows and sometimes you’ll taste victory. Or you can plan and strategise and choose your battles and sneak in and win that way – or do all that right and step on a hidden bomb and lose!
There are no sure fire ways to win every battle. Preparation is important, but no amount of preplanning and picking your best troops will predict your next battle. My son and I often discuss strategy and technique, and the various analogies our game playing has with life. As a respected level 3 Master who reached those impressive heights with no cheat codes or spending of actual cash, I am worth listening to!
As an autistic person I frequently like to do things in the same way each time. It provides me with much needed predictability in this chaotic world I find myself in. It means I am wonderfully reliable, solid and consistent. It also means I can be metaphorically shooting my level one arrows when I’m fighting level six battles.
I still have my favourite old attacks and defenses now I’ve leveled up, but I have to ensure I adapt them to a more sophisticated opponent. If I keep on using my winning strategies from my early playing days now I’m in the Master league, I’ll look amateurish and rarely come out on top.
But I like my winning strategies from my early days. Life was simpler and enemies easier to predict. I want to keep using those winning moves. They served me well. They got me where I am today. Without them I would not be here now. But they don’t win me many battles anymore.
I’ve levelled up.
I need to learn new skills and different moves.
My son and I talk about how as autistic people this can feel tough. It’s like starting again from scratch each time we level up in life. Much harder than a computer game.
But with it comes new techniques, more resources, fancier strategies and greater opportunities.
We may be prone to keep on doing things the same way regardless. Sometimes I’m asked why I do things in such complicated ways, or why I always do things the way I do even if it’s not that effective.
Partly its the old message of “try harder” taken far too literally. Partly it is because it works – or rather it worked. But life sometimes moves on whilst I’m still doing the same old thing.
Sometimes I level up in life and don’t upgrade my skills in line with my progress. Mostly it is because it takes lots of conscious effort to work things out. There is always a logical reason for why we do things. Why change that? Doing things the same way is predictable and introduces a comforting, familiar pattern into an unpredictable and ever changing world.
We should be as proud of our life achievements as we are of our gaming ones. Finding that the old techniques no longer work could be a sign we’ve gone up a level. New opportunities are open to us and new resources are at our fingertips. It’s worth trying out some new moves.
I am fed up of being autistic today!
I have no energy for masking at the moment and know that this means I will either appear totally unstable or I’ll muck up everything I have worked so hard to create.
It makes me want to give up as there seems no point.
Situations remind me that no matter how hard I try, how well I mask, and how fantastic my skills are – I am still really crap at being a neurotypical person. But I’m not neurotypical so why does it matter?
Because autistic people are not valued as whole people. My skills can be appreciated but the rest is still measured in deficits.
People assume I want to be more normal, or I’ll somehow learn to fit in. I don’t. I won’t.
I want the whole of me to be appreciated.
I often find neurotypical people dishonest, vague, inconsistent and tricksy. I still love many of them though. I accept I find those aspects of their persona difficult and confusing. I may not even like how they do things sometimes. Perhaps they occasionally annoy me. But I still love them and wouldn’t dream of writing them off as lesser, or as a broken version of me.
We are all perfectly imperfect human beings.
That’s why I’m fed up of being autistic today. I’m tired and overwhelmed and have no fight left. I get more tired anyway because my brain does so much more processing. On top of that I have to put all that effort into fitting in so I’m allowed to have a go at normal stuff like work and friendships.
My brain rarely rests. My body is usually alert to danger and ready to react.
Most people don’t realise this, and when I end up having to tell them so they’ll stop unintentionally hurting me, I feel humiliated and reminded of how the world is not designed for me.
That’s why I’m fed up of being autistic today.
So I’m taking it easy. I’m cuddling my dog. I’m taking care of myself and hoping tomorrow will feel better.
Self-care is the only way. I have a capacity for joy that others may never achieve. I seek out those sounds that reset my soul. I notice the patterns the rain is making on the window and trace each tiny droplet until it has my full focus. I read those comments that remind me I am not alone. I move in ways that reminds me I am in here – I have a right to be alive.
I rest, I recharge. I don’t plan my next battle. I remind myself that this neurotypically biased world is not of my making. I look at the birds and the trees and I reflect on the words of Mary Oliver. I remember where I belong.
A new expression has entered our vocabulary since so many of us have been working from home.
The BBC shared some thoughts on what this is, and why it happens in a recent article:
Simply put, “video chats mean we need to work harder to process non-verbal cues like facial expressions, the tone and pitch of the voice, and body language” according to Gianpiero Petriglieri, an associate professor at Insead. Paying more attention to these consumes a lot of energy. “You cannot relax into the conversation naturally,” he says.
Many of us will also spend time awaiting calls; ensuring our technology is working; and that there are minimal distractions. This can add layers of anticipatory anxiety and stress to an already energy sapping process.
According to Andrew Hines, assistant professor at Dublin University, and PhD candidate Phoebe Sun; we can improve our video call experience by scheduling shorter meetings. A lot of what determines how fatigued we become is based on what we are listening to.
The voices transmitted through the internet in real time are unedited and therefore crude to our ears. That is why we can wile away an hour listening to a podcast interview but feel drained after a video meeting – even if we didn’t have to contribute.
Their article describes how subtle sounds such as key tapping and swallowing sounds will be captured and amplified through our laptops or other video call making equipment. Squeaky chairs, eating crunchy snacks and slurping coffee can sound to the listeners as if you are chewing in their ears. Our brains respond to annoying, unnatural and unexpected sounds and force us to focus on them. The ability to filter out information is significantly reduced due to the lack of spatial cues and the loss of our ability to recognise the direction of a noise.
Network delays can cause speech; gestures; and meta-communication – all those “Mmmm”, “Uh-huh” and nods of agreement, to become out of synch. Again, this adds to the video call experience being exhausting.
So what has this got to do with autism?
I enjoy writing about shared human experiences. From my very first blog back in March, I recognised the parallels the social impact of the Covid-19 pandemic may have with some autistic people’s everyday experiences.
I am sure that those of us taking part in frequent conference calls will understand the phenomenon of “Zoom Fatigue”. Those of us who are also autistic may well draw analogies with our usual face-to-face social interactions. I’d like to share my personal reflections on this to offer an insight into a world you may not have considered…
When I am in a face-to-face meeting I experience all the same challenges as many people do on a video call:
- I cannot filter out background noise or recognise spatial cues.
- My hypersensitive hearing causes me to focus on all those annoying breathing noises, the slurping of drinks, and the screeching of moving chairs – with equal intensity.
- Awaiting meetings is stressful. This anticipatory anxiety boosts my already high levels of sensitivity even higher.
- Eye contact feels overwhelming and painful. But unlike a video call, I can’t slap a post-it note across someone’s face to avoid looking at them!
- My brain processes visual and auditory information at different speeds which can cause difficulties and a lag in my understanding.
- Knowing when it is my turn to speak takes effort.
Is it any wonder that I am so exhausted after ‘normal’ social interactions? My challenges aren’t because I dislike people, or I don’t understand the rules of conversation. They are processing issues.
What helps is the same courtesy and good humour we have on conference calls. And an awareness that this may feel as clunky, awkward and never-ending to me as many of those video calls do!
Learning to drive…
Remember your first driving lesson.
“OK, put your hand on the gear stick, press the clutch down with your foot, engage first gear, slowly lift the clutch and release the handbrake and press the accelerator with your other foot all at the same time” – you’re off.
Easy, isn’t it?!
I find that the analogy of learning to drive is useful for describing how social communication frequently feels for me. Most of us who have been driving for years can do it automatically and even hold conversations with passengers and listen to music whilst taking in the road conditions and anticipating any risks or changing road conditions up ahead.
I’m one of those people. I can get in my car or on my motorcycle, intuitively find the controls and I’m off!
In fact, driving – and riding motorbikes and bicycles – are things I find extremely enjoyable. They are in the very small group of physical activities I can do without needing to consciously think about what to do with my body.
Social communication on the other hand is something that has never become automatic, and I assume that after 47 years of trying, it possibly never will. In a conversation I often feel like that learner driver I once was – awkward, painfully self-aware, and a bit clunky on the controls. I might get the order right, and use the controls appropriately, and get from A to B, but my knuckles are white from gripping the mental steering wheel inside my head so hard!
From a communication perspective I can ‘drive’ well enough to pass my test. Like many learners, I possibly have fewer bad habits than some experienced drivers. I probably know the rules of conversation better than many people – I try to be conscientious, thoughtful and considerate. But just like understanding the highway code off by heart – it’s not necessarily the way people “actually” drive. All those rules you’re meant to break – all those things that we know aren’t “real driving”… These things pass me by, and in communication situations, I often feel like a very competent learner who has passed their driving test with no major faults – but is actually not representative of most road users!
Being a mechanic doesn’t help much with driving either. My understanding of people is good, as is my knowledge of vehicles. I know more than the average person about how engines work, the sounds they make when something isn’t quite right, and the way other people drive. I can competently fix someone else’s puncture or service my own bike adequately – much as I have a good understanding of people and can help other people with their communication skills. This doesn’t help me be a better driver though; either in a vehicle or out there socialising.
When I am on familiar social roads I can begin to take in the scenery and enjoy the journey, but if you were to send me across the channel to where they drive on the other side of the road I’d be floundering. Put me in a social situation I’m unsure of and I struggle. I can do what I do, well. A bit like when I moved from Bristol to West Wales – my pulling away from junctions and roundabouts was far faster than needed and fortunately didn’t result in me rear-ending any of the local, laid back drivers that are used to having plenty of time for manoeuvres.
I can navigate the roads of social communication, but the effort is huge because I’m usually having to consciously work out what to do unless the road is one I have travelled down many times before. I prefer to keep my social journeys close to home and not venture out at busy times or in bad weather. We all find it helpful when other road users use their indicators properly – who hasn’t felt frustrated by someone indicating left that then turns right?! Why can’t people communicate accurately too and say what they mean and mean what they say?
I’ve been able to talk for over 4 decades and don’t fancy highlighting my social struggles with the equivalent of L Plates. I’d rather other people were courteous and gave me space and time to work out how to navigate through social situations safely and at my own pace, on my own route and under my own control. I wish that interacting with people was as straightforward as driving and I wonder why I have never got from that learner driver feeling of everything being conscious and clunky, to where I can just jump in and enjoy the ride?