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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.

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!

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Level Up!

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.

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Why some days I am tired of being autistic…

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.

We are not on a level playing field.

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.

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Zoom Fatigue

A new expression has entered our vocabulary since so many of us have been working from home.

“Zoom Fatigue”

The BBC shared some thoughts on what this is, and why it happens in a recent article:

https://www.bbc.com/worklife/article/20200421-why-zoom-video-chats-are-so-exhausting

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.

https://theconversation.com/zoom-fatigue-how-to-make-video-calls-less-tiring-137861

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!

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5 minute read social communication

Autism and the road to communication

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?