It’s been three years since the first COVID-19 lockdown took force and completely changed our lives. The dominant message around lockdowns and this period more broadly is the negative impact it had on people's lives, businesses, relationships and overall wellbeing. It’s this same message that saturates the media, research papers, academic discussions and everyday discourses surrounding what we felt, which continues into the present day. We’ve heard the harrowing stories of people separated from their loved ones until it was too late, or the struggles faced by families with unprecedented demands placed on them to simultaneously work, care and facilitate homeschooling. We’ve read the stories of those in disadvantaged positions, those who were isolated, living out the fears and uncertainty of this time completely alone. Then there are the stories of those on the frontline, NHS staff, public service workers, carers, and those who could not shut the door and isolate because life needed to carry on, they needed to be there for those most in need.
All of these stories are so important, but there is one story missing from all of this. One which potentially represents a vast number of neurodivergent people, those with mental illnesses and those living with social anxiety. This week is World Autism Acceptance Week and I think it’s time to tell it from our perspective. Because many of us struggled with lockdown life at times, but for some of us it was a period of escape and a break from the pressures to conform.
For those of us with social anxiety, living in a noisy and demanding neurotypical world every single day is completely overwhelming. Having to mask and pretend to be ‘normal’, having to do smiles and pretend to laugh at jokes that we don’t really understand is overwhelming. As Pete Wharmby has recently discussed in his book ‘Un-typical’ (which is probably about the clearest insight into life as an autistic person at present), people don’t understand the complexity of what happens in our minds.
We don’t just say a brief hello to someone and then move on with our day. We think and overthink, and then ruminate for hours, days and sometimes weeks over a single interaction. Being autistic in a neurotypical world is exhausting, and personally, when lockdown life struck it was a relief from all of this. A time when everything moved online, a time when I didn’t need to speak to other people in person, a time when I could unmask. From speaking with mental health and autism professionals as well as other autistic people, I know that this story isn’t just my own. It’s a shared story that has largely been hidden from the public domain. Because the world was determined that it was returning to normal, and our perspectives were ignored.
Autism Acceptance Week
For Autism Acceptance Week, we feel that rather than just raising awareness about autism or gaining acceptance from wider communities, it’s time to step forward and present new and practical ways of changing things. Amidst the COVID-19 pandemic, so much of the everyday changed dramatically. Things that we took for granted, and would never have believed would ever change. Yet they did and that’s why it’s important to recognise that things can be different. Many autistic people have to 'mask' who they are in order to fit in and find some form of acceptance which evidentally is not really acceptance. Life shouldn’t just be about us masking in discomfort, surely the world can bend for us a little too?
So here are five things that could create a more inclusive world, going beyond just accepting autistic people to actually creating changes that are representative of our voices and experiences. For the first time on our blog, I’ve brought Jon in as a second voice. I think it’s important that both of us have a say as two minds are better than one!
1. Shop layout
When it comes to shopping, ‘click and collect’ and online ordering is my go-to. Quick, convenient and an absolute minimum of people. Sometimes though, I have no other option but to venture into an actual physical shop. A warren of crowded aisles, ear-piercing noise and smells that not even an FFP3 mask can disguise. I don’t think anyone truly enjoys shuffling around Tesco in search of their overpriced tins of baked beans, but for autistic folk, the chaos of the supermarket truly is an overwhelming hellscape.
So, thinking back to those early days of the pandemic, what can we learn from that time when the supermarket was one of the few destinations deemed ‘essential’ and still open for business? For me, lockdown created order in the supermarket. A neatness and sense of direction that could easily be understood. Yes, the bright lights were still there and I don’t think any natural disaster could dampen the bleeps that seem to blast from every corner of the shop. What did happen though was the placement direction arrows pointing you gently through one-way systems and useful spots on the floor to ensure everyone queued correctly. No more pushing and shoving. No more trying to avoid eye contact with the chatty shopper heading straight towards you. It wasn’t perfect, but it was certainly an improvement.
Recently I visited a sports shop. It was small and cramped but with all of the pitfalls of a larger supermarket. I dashed in, picked up what I needed and headed straight to the checkout. Disaster. There was absolutely no clue as to which way people needed to queue. A complete free for all. People trying to push in and awkward glances everywhere. Some kind soul offered to let me go first but how could I explain that I would rather wait until it quietens down? Tuts and niceties come from all directions. This sort of thing has happened to me a few times now and it’s completely overwhelming every time.
All of this could have been avoided if we simply had our little islands of safety printed in bright, easy to read instructions stuck to the floor. ‘Please queue here. 2 meters apart’. Simple. So, if you own or run a shop or supermarket, please think again before tearing up these signs in a race to the ‘return to normal’. Sometimes, ‘normal’ just doesn’t work. Sometimes a point in the right direction can be a good thing and sometimes it may just save someone from an awkward encounter that may ruin their day.
2. Restaurant booths
It’s been so long since we’ve been able to go out for food and sit in a restaurant, cafe or pub. Even whilst in Scotland a few weeks back, we sat outside the restaurant in our coats and scarves to eat which caused some head scratching from others, but honestly, I just can’t eat in front of people. It spikes my social anxiety to the extreme and I’ve lost count of the times I’ve had to leave a meal because a group of people decide that they want the table next to us.
One thing that was really good during the pandemic period, was how these spaces were adapted to separate people out with the use of booths. Booths are a huge help towards reducing social anxiety. Firstly, being seated in a booth gives you the privacy to eat without someone gawping at what you’re having when it comes out, as well as when you’re actually eating it. Secondly, it allows privacy to talk as well as a sense of an enclosed and private space. I’m sure this may resonate with many other neurodivergent people, but one thing we don’t need when experiencing a sensory meltdown is an audience. A meltdown can still happen in a booth if everything else is overwhelming such as music blaring out or loud people seated nearby. But it is far less likely to happen if we are just allowed a little more space and privacy rather than being in an open seated environment or worst of all, shared tables.
So, it might seem a big ask, but restaurant owners, a vast number of the population are autistic people. These are your customers just as much as those who are neurotypical. Personally, I don’t tend to go out for food myself because it’s too stressful, but if booths or more private tables were more of a norm in restaurants I’d be far more likely to come along and eat your entire menu. Not only that, many of us who are autistic are loyal to what we know - give us the ability to enjoy a meal without overwhelm and you’re probably going to see us again.
3. Booking systems
As an autistic person, certainty is king. There is nothing worse than turning up to your favourite venue only to discover it is packed with visitors with no room to spare. I have lost count of the number of times we have driven somewhere, filled with excitement for what the day will bring, only for everything to be ruined by an overflowing car park and a queue of eager customers seemingly oblivious to the overcrowded nightmare that must surely await them inside. We don’t bother joining the queue. We don’t even stop the car. A quick turnaround and it’s on to plan B. As a couple with extreme social anxiety, there always needs to be a secret quiet place to retreat to when a plan goes out the window. For this reason, it can take hours to plan a simple day out before we've even left the house.
In late 2020, during a brief period when COVID infections were seemingly dropping off, a few tourist attractions began to reopen their doors. This was certainly the case in Wales anyway. It was limited to mostly outdoor attractions such as castles or wildlife centres. However, strict rules still applied. As well as the usual social distancing, hand-washing and mask mandates, pre-booking booking was an absolute requirement. There were a limited number of spaces with time slots throughout the day. It was brilliant. We could buy our tickets safely in the knowledge that there would only be a handful of people there at a time. If the tickets were sold out, we didn’t need to waste a journey. It provided safety, comfort and certainty.
Fast forward to the present day and most of these innovations have disappeared just like every other COVID ‘restriction’. Of course, online or telephone booking systems still exist. Just as they did before the pandemic. But the time slots and limited spaces have given way to an attitude that seems to relish ramming as many people as possible into a tight space. I understand that limiting customer numbers comes at a financial cost and many businesses simply cannot afford to turn customers away. Maybe though, there are some lessons here. If governments across the world can grant huge financial support packages to keep businesses operating through a global health crisis, then surely as a society we can come up with equally creative solutions to help those with disabilities who struggle daily.
4. Remote working
So, this was one is to be approached with caution as we’re aware that it’s been a hot debate for a while now. The first thing that needs to be acknowleged, is that we know that not all jobs can be done remotely. This in itself is a problem, as it tends to be the more tech-orientated roles that are set up this way - roles that are largely inaccessible for a large proportion of us. There are so many debates here, that it would take an entire series of blog posts to unpack this one fully. So for now we’re just going to focus on the basics, how remote work can be embraced to help create healthy and autism-friendly workplaces.
Firstly, the social demands of work are often the biggest stressor for those of us who are neurodivergent. Having to negotiate all of the interactions of the workplace, saying the right thing to the right person, working out who is the top dog and who has the most social capital... it’s all completely exhausting and that’s before you’ve even done any of the actual work itself. Not to mention in-person meetings. Everyone crowded into a room together where it’s presumed ‘isn’t this great’ when actually many of us can't even focus on what is being discussed because we're completely overwhelmed. All of this in-person emphasis has caused such a large amount of pressure on people with disabilities. It’s not a natural environment for us and as Pete Wharmby has recently said in his book, many of us navigate our closest relationships online. So it’s not just remote work that works for us, remote social is a thing too. The digital world allows for greater asynchronous communication, allowing more autonomy and time to navigate interactions that are often so difficult in person.
Secondly, I think that a huge problem with attitudes towards remote work is that it's now being used as a reward and punishment system in many workforces. This is where employers are perhaps missing a trick, because remote work isn’t something that we just want because we're being awkward or we can’t be bothered to leave the house. For those of us who are autistic, it’s often an absolute need for us to be able to work without distress, panic attacks and in the end burnout.
There’s still a long way to go with this, with many sub-debates and mythical discourses to break down such as ‘remote workers are lazy’. But for many autistic people like myself, giving us the ability to do our jobs, study, socialise or whatever else in a way that doesn’t cause us distress will have far greater results in the end. You only have to look at online neurodivergent communities to see how many people are out there right now hustling for freelance remote opportunities. This isn’t because of laziness or being undisciplined. In fact, quite the opposite. Face-to-face interaction for autistic people in this neurotypical world takes far more work than having to pitch yourself online continuously (and many of us know how tiring that can be).
So if we can put away our battle sticks and start to understand that remote work is a solution rather than a threat, this might be one pathway to true 'autism acceptance'. It might allow for more job security for autistic people, fewer people being signed off due to work-related stress and overall better productivity for everyone.
So my main suggestion here is to the employers. If you are offering remote or hybrid work that’s brilliant but please don’t use it as a punishment or reward incentive. Doing so only delegitimises the needs of many disabled people by trivialising it as a job perk. Because for many of us, it’s an absolute need, and we can only truly be productive in this way, without the sensory overwhelm of face-to-face environments.
5. Social distancing
There’s this phrase that does the rounds in introvert communities, ‘I was social distancing before it was cool’. Jokes and puns aside, we recognise that social distancing was something that many people struggled with throughout the lockdown periods and beyond. But for us autistic people, having space and distance is something that we need to deal with the noise and sensory overwhelm of the world. For many of us social distancing was a break from this noise, it provided order and a sense of security that our personal space was our own.
I think one problem with social distancing is that as the world has hurtled back to its supposed ‘normal’, social closeness has now gone far beyond what we encountered before the pandemic. We came across this recently. J and I went out for a walk the other week, there were very few people around (we have to choose our times wisely in Pembrokeshire), and then all of a sudden a couple appeared right across the other side of the field. I kid you not, this lady practically screamed a hello at us from afar - it had to be a scream as they were so far away. It really was completely over the top. It’s not just quiet locations either, busier places also feel a lot cosier than they used to. You can be in a shop or a pharmacy or wherever, and people want to get close, close and closer still. It feels like a collective pushback from being told that we couldn’t get too close to others, to people now wanting to practically sit on your lap.
Again, social closeness is also a trigger for overwhelm for those of us who are autistic. Many of us struggle to hug someone we’ve known for years and although I personally like a hug from a friend or family member, I cannot cope with any type of physical or social closeness with someone I don’t know. My suggestion here is mainly for people to consider that others may not have the same social needs as their own. What can feel like a benign ‘hello’, weather conversation, or five seconds of cosy proximity for some, can be hours of distress and sensory overwhelm for another.
We also need to stop thinking about what is polite, and consider that it’s not all about politeness. If someone doesn’t smile or say hello when passing by, they most likely have a lot more going on than people would realise. So, maybe we need to move away from these greetings, or if one isn’t reciprocated then not to force it or assume rudeness on their part. Similar to getting up close and cosy in someone’s personal space. I know that we live busy lives and we just need to get to that meal deal sandwich quickly, but really most of the time we are the ones who move out of the way when in the way. Couldn’t we meet in the middle and just give those who need it a little more space when these situations arise?
So these are just some of our suggestions. It is by no means an exhaustive list. There are many small but practical changes that could help create a more inclusive world. A world that isn’t just aware of autism or tries to placate us with token gestures of acceptance. A world that offers us a genuine opportunity to live comfortably and safely as our real selves. The COVID-19 pandemic proved that dramatic changes to our lives can be made overnight. That collective efforts for the greater good do indeed work. Of course, change is never easy, but it has been done before and it can be done again. Surely we are worth more than just mere acceptance? Surely we need more than just awareness? Surely now is the time for autistic people to finally thrive.
We have mentioned just a few of the changes that could be implemented to make our world a more inclusive and autism friendly place. If you have any suggestions of your own or would like to share your own experience of lockdown, please feel free to connect with us on Twitter or in the comments below.
