Pain. We live in a world where we are expected to hide it. It’s not ok to be not ok. Several weeks have passed now. People tend to withdraw sympathy as time moves on. Sympathy moves on and they want you to also move on. To be ok, to live and mirror their own happiness or whatever is happening for them in their lives. Whatever they want from you, your own pain needs to be put away. You need to move on from it because others tell you to, often long before we are ready. Once you show your mask, that is the version of you that they expect to show up the next day. There is no going back to the truth. I masked too hard this week. My eyes are broken from tears and fatigue. Literally. They are swollen to the extent that there’s a daily rigmarole of hot compresses, eye drops and ointments. Then, the outer world. Makeup and fake-up - a pretend smile. Pushing on, playing and pretending because it’s easier at the time. It’s easier to pretend everything is ok when we live in a world of judgement. Someone else’s pain is always going to be greater or more profound. I know where this goes. Too many of us have to hide our inner realities, be it with friends, family, in the workplace, or even on social media. There have been times this week when I’ve been awake in the night, the usual panic attacks and not-so-usual wake-up times. Writing obscure poetry and prose in an attempt to get some of this stuff out without giving it all away. Shaking and juddering through the day. Coming away from the world at the end of it completely hazed. It’s an expectation. Don’t give too much away, be professional, be normal, pretend and everything will be fine - wasn’t that what that study said yesterday? Suppress it. Pretend. Let them think that we are ok. Let's not begin to go into depth about the online world, we'd be here all day. But that's a problem also. So much emphasis upon creating a pristine digital identity, 'don't do this', 'make sure you come across like that'. It's yet another realm of life where we are being instructed to mask our raw, true selves. Sometimes, we don't want to be a carefully curated brand or a digital commodity to be 'liked', followed and engaged with. When in pain, we often just want to be real. That said, I am all for personal privacy. Someone I love deeply taught me the value of that. I truly believe that it is safer to keep some things back. But that doesn’t mean that we should all have to keep masking to this extent. Because masking this much pain, and pretending to be happy is not making us happy. It’s leaving us with one of two options. The first being speaking out, at the risk of oversharing and making ourselves more vulnerable. The second, completely burning out after weeks or more of pretending to be ok. So, then why should we blame others? After all, if we give them the signal that we are ok then what else are they to think and do. It isn't down to them, right? This is the official line, but the reality is that if we do unmask and tell the world that we are not ok, then the likelihood of being criticised, compared to more serious stories of pain, or simply being ignored becomes more likely. The truth is, we cannot unmask because there are some types of pain that we don’t want to be judged. Judge my depression, my lows and my blues, because that’s my own and I’ll fight back all of the way on it. But this time, this pain is not for others to judge. It’s too personal. I’m sure that we all know that kind of pain. I guess the parting question then, is how do we unmask in a healthy way? Somewhere between a chronic overshare, and saying nothing? Imagine that. Being able to say, I’m not ok but I don’t want to go into detail. Imagine saying that very thing and it truly being accepted? Imagine not being compared to others, just having compassion without judgement and measuring contests. Honestly, I know that I sound like a crap version of John Lennon but it’s true. How do we find that balance without the comeback? I don’t know the answer, but what I do know is that people think we’re ok because of our masks. The same veils that make us perform pseudo versions of ourselves. The masks that were given to us by the same society that attacks us without them. Masks that make people think we are ok, because it’s easier. So, that’s why I have written this today. Because if there is anywhere I can be honest, it is here on my blog. And the truth is that right now, I am not ok. I just wish that there was a greater understanding of the things that cause us to pretend that we are. Because my eyes really f**king hurt (literally), and I could do with unmasking for a while.

Do you sleep well? Sometimes, but often not. Are you tense - do you feel stressed? Yes. Most of the time. I have to do a lot to be able to relax. At night, I sleep with industrial ear plugs, blackout blinds, a mouth guard, a new …. Ok, ok. So you are stressed. What do you think is making you this way? Well, it’s just how things are. Everything. The noise, the bustle, the rush, so much expected of me. So you are under pressure right now? Well yes, but I’m talking about things generally. Ok, but what is making you this stressed? Well, erm, it’s just the way things are. Basically, the world is overwhelming. Have you had one of these conversations before? Chances are, if you’re here now reading this then you are probably someone who is like us. Someone who has at times, or often felt overwhelmed with the world. Perhaps you’re someone with a busy life, a crazy schedule or someone who is going through a lot right now. Whatever your circumstances, I want you to know that you’re not alone. The world is overwhelming, but that isn’t our fault. We live in a crazy fucking society. A society that tells us we need to be resilient when so much has gone wrong. Where people are worrying about where they are going to live, how they going to earn an income, and how they are going to care for loved ones who need support. The list goes on. With all of this external noise, the world’s problems quickly become our own. It’s not easy to detach from, because whether we like it or not, we are all a part of this world. For those of us who are different, the world is very different through our eyes. Let’s talk about autism. Imagine walking into a room today, nothing intense, maybe just your kitchen. Now imagine this. Rather than the quiet ticking of the clock greeting you, an echoing drum beats loud blasts, and a screaming fridge fan rages at you. Your kitchen lights are glaring and swimming, making you feel as though you’ve just entered some kind of rave. Your beloved dog barks for its breakfast but that bark makes you shake. It vibrates through you because sudden and unexpected loud noises are the worst. The suddenness of a door banging, the dropping of a spoon, the chattering of your family. All competing sounds that your brain gets muddled, blurring them all into one fine mess. This is before you have even ventured out into the outer wilder world. Now, imagine what being in this state does to our minds, bodies and lives over time. Imagine if every time you saw a doctor, the cause of your illness was stress. Imagine if every time you made a decision in your life, you had to first think about sensory overwhelm, the anxieties of being around people, the stress of society and its digital overload culture. We can’t change the kitchen, but the outer world influences how loud it sounds. Many people find the world overwhelming, but for those of us with autism there are extra layers to navigate. I wish that people could truly see the world through our eyes. Maybe if they did, the world would be less overwhelming. If you can relate to this blog, or you would like to discuss your own experience of trying to survive in a completely overwhelming world, feel free to join us over on the Aunty Social Forum.

Storm. Wild winds blow, moving everything to a new place. Commanding its attention, but very little given. For those of us in the centre of the storm, we have little choice but to live it out. Those outside of it, do not feel its power and perhaps only imagine its effect. Sympathy for those in the outer, distant and wilder places. Empathy for those who share the storm. When you live wild, you see the storm. Its fast-paced nature, its hungry growls. Too untamed to ever truly belong and causing destruction to find its place. Storms, however, cannot live in one place forever. Some places see more storms than others. Inhabitants of these places speak of their storms, even naming them or giving them metaphors. At times, they might be spoken of widely, but are only really known by those who live them. Storms are sites of conflict, a changing world that we believe we have little control over. Loud and unkempt, these storms appear to grow bolder with greater rage, but in some places they are commonplace. The distant, faraway places. The outsiders who are frequently spoken of but seldom understood. Wild, faraway places are perfect for storms for their vulnerability and isolation. Distanced from the rest of the world, and easy to retreat from when the finer days are spent. Fearing the reality of their rawness, yet never deserted by their people. This storm is their home. Storms in this sense, are a measure of loyalty and love. Many run far when a storm arrives, but those who stick around do so out of love.

It’s been a while since we’ve done one of these. Following a bright and breezy June where we spent most if not all of our free time outside, now the summer months are here and social life is roaring. Summer has arrived and with it, the land of the living, the crowds of chaos, the filled to the brim walking spots and the eager faces popping up over hedges crowing hellos at us as we attempt to escape. If this sounds familiar, you’re probably on the same sort of page as us right now. So let’s use this very page to talk about social anxiety during summer, and alternative ways to enjoy it. Firstly, we all know that summer is busy. The schools are out, the holidaymakers are arriving in our coastal towns and all of our usual quiet places are suddenly out of bounds. Booking a holiday or even a short break somewhere else is out of the question. Too expensive, too crowded and too noisy. For the next six weeks at least, external life is packed out. It can feel as though there is no escaping it. For this reason, it requires a lot of creativity to find an alternative way to enjoy summer. You think you’ve mastered it but then it seems that everyone else has the same idea so it’s back to the drawing board. That is something that people often don’t understand about what those of us with social anxiety have to do. When everywhere is busy it isn’t just about avoidance for us, it means that we have to be adept at working out what the alternatives are. But, contrary to the belief that people with social anxiety stay indoors, hibernating until it’s all over, the truth is that we can get out and about and there are alternative ways to enjoy summer. So, here are five ways that we do it as well as some common things that happen in these situations. 1) Geocaching Download the app, put on your walking shoes and get outdoors. It’s pretty much that simple. But, in case you don’t already know, Geocaching is like a real-world treasure hunt where you use GPS coordinates to find hidden containers. Believe it or not, these are hidden EVERYWHERE. You will be surprised just how many are tucked away in your local area. Hidden behind trees, under bushes and magnetically attached to roadsigns in random lay-bys. You can even hide some of your own. The great thing about Geocaching is that it gets you outdoors, and usually to places you would never consider going. Over the years we’ve found abandoned ruins, hidden beaches and even an old railway cart on an overgrown bridleway. These unusual, and most importantly quiet places, have been a lifesaver for us during the busy summer months. Things to consider Geocaching is great for quiet outdoor adventures, but as previously mentioned, the caches can be found pretty much everywhere. And as those of us are all too aware, people can be found pretty much everywhere too. That being the case, we can’t promise you will always find yourself all on your own when out on a treasure hunt. As with any outdoor activity, there is always the risk of bumping into a fellow hiker or over-enthusiastic holidaymaker intent on chatting about the weather. That being said, when planned carefully, many geocaching locations are usually much quieter than your usual tourist hotspots and busy town centres. It’s also worth noting that rummaging through the bushes or climbing up trees can draw a bit of attention. Who wouldn’t be curious about someone who is neck-deep in the overgrowth with their hand stuck down a hole in the ground? People are bound to ask questions! Fortunately, everyone we’ve come across has been very friendly and are keen to learn more about Geocaching. Someone even tried to help find an elusive container. Our advice would be to use the app to find those more remote locations, enjoy yourself and just be prepared for brief interactions with curious passers-bys. 2. Cycling Cycling gets a lot of flack, but I promise you, it’s worth trying. Life on two wheels has been absolutely transformational for our mental health. Many of us have those fond memories of childhoods spent out on our bikes, whether it was learning to ride or as a means of seeing friends. The problem today is that cycling is all too often perceived as dangerous, frightening or if you see the posts on social media, subject to aggression from other road users. Whilst these things do exist, there are ways to enjoy cycling in a safe way. We started riding back in 2020, not so much for fitness but because we wanted to find a way to enjoy the outdoors without having to speak to people. With so many out and about walking and hiking during that time (it felt as though our entire village were walking the very same lane!), that is one of the greatest things about cycling. See someone on a walk, they may collar you for a chat - see someone on a ride, however, and at most, it’s a fly-by ‘Hi’ as you ride past. If you don’t have a bike already it truly is a buyer's market right now to pick one up second-hand. We paid around £90 each for our trusty old hybrids back in 2020 - now the same type of bikes are for sale at just £30-40 - sometimes even less. If you decide cycling isn’t for you by the end of summer, it hasn’t cost you the earth and there will always be someone, somewhere who will be willing to take it off your hands or a place where you can donate it. Once you’ve got your bike, you might be looking to build your confidence. For this, we’d suggest taking your first rides in familiar locations and an absolute must is to watch GCN videos on YouTube. They are absolutely brilliant and cover pretty much everything you need to know starting from the basics (they are entertaining too - see the epic rides, especially the overnight ones). Things to consider When first starting out with cycling, don’t assume that cycle paths are the quietest places to ride. They may be called a ‘cycle’ path but really they are for everyone, often frequented by both dog walkers and general walkers. With them being so narrow we have been ‘brake checked’ on them more than any other place we've ridden. The most frequent risk we come across on cycle paths is dogs off leads. Ring your bell when approaching a human and quite often they appreciate that, but our furry friends don’t understand and if they don’t have a cautious human taking care of them, they’re probably going to inspect our shiny wheels out of curiosity. So from our perspective, road riding is the way forward. Especially quiet country lanes. Fewer people, less interaction and honestly, we find that cars mostly just want to get past and be on their way. When we have had people show interest when stopped somewhere with our bikes, they are usually very friendly - but it tends to be manageable. If they are starting a conversation about your bikes, chances are they understand cycling. If they don’t, there is always the excuse to leave with fitness activities - staying in those zones is important! Secondly, another thing to know about cycling is that you can cover more ground at a quicker pace taking you to the quietest of places. Even if you start out from your home town or village, it won’t take long until you are away from the crowds and people on their walks. On a bike, you can move faster, get away from the places you don’t want to be in and enjoy the spaces that help you recharge. Places that are out of the way, often inaccessible on foot or by car. 3. Visit the city Ok, stay with us on this one. As introverts, and people with social anxiety, thinking about walking into a busy urban space is not an ideal thought. For those of us who live rural, such spaces are completely out of our comfort zones - filled with strange sounds, smells and so different to our usual haunts. But honestly, there is a lot to be said for anonymity in a crowd. Whenever we visit a city, as this is often so far away from home - there is less chance of seeing someone we know, something that is a great source of anxiety for both of us. We also find that cities or busy towns have less scope for the awkwardness that comes from unwanted conversation. It’s a very different crowd. Where we live in rural Pembrokeshire - a place that is highly sought after during the summer, a simple trip to the beach or walk along the coastal path can result in so many people trying to make cheery conversation, one after another. Saying a quick hello once or twice isn’t so much a problem, but when we get to our tenth it can be overwhelming. From our own experience, this doesn’t tend to happen so much in more urban spaces - it’s an entirely different culture. Of course, if you are someone who already lives in a city then you might want to visit an alternative to the place where you live. But whatever the case, the great thing about being in a city as a visitor is that even if it does become too much, there are always plenty of alternative activities to choose from, as well as the option to go home at the end of them. Things to consider Obviously, visiting a city doesn’t come without its challenges when it comes to social anxiety. If you are someone who lives in a quieter location, the noise as well as having less personal space is probably one of the first things you will notice. Simple things like crossing a road, with greater volumes of people doing the same, you’ll likely end up shoulder to shoulder with someone and that can feel very uncomfortable. To help with this, it’s worth checking out exactly where you are going to be to avoid the overcrowded areas, as well as visiting at quieter times of the day. Whenever we visit a city, we often have a full alphabet of plans set out, because being autistic and living with social anxiety, I know that quite often plans don’t work out. You can visit a place with all the best intentions only to arrive and it’s completely different to how you envisaged it to be. Venturing into the unknown isn’t easy, so for that reason, it’s definitely a good idea to check out places beyond the official visitor guides - check social media, look at what other people have experienced in these places. It’s not going to be the same for everyone of course, but it’s always good to have a general idea and if you are doing something specific, ring ahead. Many places are happy to accommodate people with sensory and disability needs (shout out to Castell Coch here for their amazing team). So, don’t be afraid to make that call or send an email - even if it is just to say “I have social anxiety, when is the best time to come?”. We know that there’s still a long way to go with society accepting us socially awkward folk, but honestly, we are moving in the right direction and there is greater understanding than there used to be. Castell Coch 4. Rainy day activities Summer may be wet and wild in the UK this year, but rainy days don’t have to keep us from enjoying ourselves. Firstly, rainfall generally results in fewer people so if you do want to go to that place, those days are probably the best time to visit. We recently did a trip to one of our favourite nature places on a windy, grey and wet Saturday. Arriving in the car park it was like winter. Half occupied, no cosy parkers, and those who did venture out didn’t tend to stay long. It allowed us to fully relax into the place without feeling on edge and needing to move on every few minutes. It was nice. If the weather is too wild to the extent of danger then obviously indoors is the way to go. It goes without saying that public indoor activities are going to be extremely busy on these days - so approach these with caution or perhaps opt to do them on sunshine-filled days when everyone else is outdoors. If you decide to stay home, then these summer rainfall days are great for starting something new for you. It might be the perfect time to start a new online course outside of your usual area - or pick up a book by that author you’ve always wanted to read but never had the time. You might even enjoy trying an alternative approach to online socialising, stepping back from social media and taking a slower pace through an online forum such as The ASW Forum (shameless plug)... Things to consider These are just a few suggestions, but the main thing to consider with out-in-public rainy day activities is firstly, how many others will be doing the same? For this reason, it’s good to think outside of the box, thinking less about what is the ideal thing to do to keep dry and more about ‘What are people not going to be doing today?’. The answer to that question will usually bring you closer to a peaceful day - as long as it isn’t a dangerous activity of course! Secondly, another thing to think about is that following a rainy day when many people have been stuck indoors, the first thing we all want to do is get outside, take in the sun, and fill our lungs with fresh air. We are only human after all. But that also means that outdoor places are perhaps going to be exceptionally busier after lots of people have been cooped up inside, especially if they are on holiday and want to get the most out of their time away. So it might be worth planning any outdoor activities with this in mind and utilising those rainy days for their quieter essence. You might get drenched but you won’t have to do as much peopling, and sometimes, it is those days that are exactly what we need. 5. Watch the sunrise Here’s a quick and simple one. Get up early, make yourself a flask and find a nice quiet spot to watch the sun come up. It’s a small thing, but it’s worth the early start. Nothing beats the sight of the sun slowly rising above the horizon while the birds wake up all around you. What’s more, watching the sunrise is often a much calmer and more relaxing experience than going out to watch the sunset. People like to gather when the sun goes down, but during sunrise, most folk are still tucked up in bed. We make an effort to do this a few times each summer and never regret it. We recommend you try it too. Things to consider First of all, we need to recognise that not all views are created equal. If you live rural or by the coast, I’m sure you can think of plenty of stunning places to watch the sun come up. But if you live in a town or city, your options might be more limited. Don’t let this put you off though. Even just being outside in the park, your garden or even just sitting inside looking out the window can be a rewarding experience. Those first moments of sunlight are magical, no matter where you are. Secondly, if you do venture off somewhere quiet, just be aware that you may not have the place entirely to yourself. Dog walkers often take advantage of those early quiet moments when no one else is around. In our experience though most people aren’t up for much interaction. Chances are if they are out that early in the morning, they aren’t looking for a social. Most will say a friendly ‘good morning’ and then be on their way. Finally, keep an eye on the sunrise times. At this time of year, sunrise is very early (about 5:30am for us), and it usually starts getting light about 45 minutes before the stated time. If you would prefer to get an extra hour in bed, wait until later in the summer for when the sun comes up at a much more manageable time. For those of us with social anxiety, it’s good to have a few ideas to be able to plan an alternative summer. Because it isn’t always easy and it can be difficult planning things away from the norm, and away from the crowd. These are just a few suggestions but we hope that this can help you to enjoy your summer in a way that works for you. Feel free to add your own suggestions over on our forum…

Sometimes, there are songs that resonate with you on so many levels. We both love this band, and we love living beside the ocean. So, we made a little video - hope you like it... Do you have a favourite song? What does music mean to you? Let us know over on the Aunty Social Forum.

When someone has touched our lives, it doesn’t matter how long it has been since you were last in contact. Hearing that they have passed will hurt. When we move through time, we move further away from the moments that we cherished and the people we care for who are no longer here. But we have to live in the here and now. We cannot spend time wishing the past was different, and we cannot make up stories in our minds about what that different would look like. Because it never existed and it never will. We have to cherish what we had then that went well, and learn from the things that went wrong. We will have regrets, but dwelling on them only removes us from the time we have now. The past is gone, there isn’t an alternative. One day, this day now will become a distant day of the past, whether we remember it or not depends on what came of it. Life is the here and now. Embrace the time that you have.

Until I wrote openly about Twitter addiction and completely stepped away from the platform, I didn’t realise the extent of what it was doing to my mental health. At the time I knew it was a problem, but whilst I was there still using the platform, I didn’t realise how much stress it was causing and how that was spilling over into other areas of my life. Since stepping away there has been a big difference. That’s not to say that I am living in a utopia, but living away from an audience and sharing all of my deepest struggles is soothing. I don’t wake in the night right now feeling dread surrounding what I’ve said online. It’s calming to wake with a blank slate each day, eased from the pressure of digital life. There is a lot of pushback towards speaking about social media and other behavioural addictions relating to the online world. I think that a huge part of the problem is that many of us don’t want to admit we have a problem, perhaps through fear of being mocked, invalidated or otherwise. When you admit to having a problem with compulsion it’s perceived as a sign of weakness or self-indulgence. Rarely do we ever consider the wider, systematic causes of these problems, nor the reasons people have for defending the likes of Twitter and other platforms. Where there are people who have carved careers out of the online world, or situated within one of the many ivory institutions that hold the authoritative voice on these spaces, it’s little wonder that we live in a culture of silence around this issue. So it is this that is the problem. If the discourse remains punitive against individuals, and research conducted around digital addiction is situated in a context of silence and denial, then it is feasible to see why we don’t acknowledge the problems caused by social media and what it does to us. As some may know, I write a lot about the attention economy. It is a specific area of interest for me because having experienced the profound negative effects it has had on my own life, I can see how this affects others too. I can see how it consumes us, how we become different people, at times losing ourselves and sharing every little thing about ourselves to please algorithms and audiences. The question raised from this is, who or what can we really trust in a world that fixates us solely on being seen and raising our own status? I wrote an article earlier this year about attention being survival, now I am not so sure whether that is the case. Do we truly need attention to survive if that attention is potentially harming us and leading us to do and say things that only make us more vulnerable? The attention economy is a side effect of something bigger though, it’s only part of a world where user-generated content is the pathway to profit. And it isn’t just constrained to the addictions and compulsions that some of us have as a result of these platforms. It’s what they turn us into, collectively. Only this week, as a lost submarine vessel takes headlines around the world with five people held captive, within not more than a few hours another garish meme appears and goes viral, making parallels to Titanic the film, and mocking the situation of these people and their families. A few years ago, such type of content might have appeared in the wake and aftermath of such an event, but now it’s a rapid race not only to find these people beneath grave circumstances, but also a digital race for virality. At the time of writing this article, these people are not yet found, but the memes trivialising their circumstances and what could very likely end in lives lost have been created and shared within minutes... These very memes are the very metaphor for where we are today. A travesty happens in the world, yet online where attention and visibility is everything it’s simply another performance prop, another prompt for content, another event to make a joke out of. Because it is this content that goes viral. We are breeding a culture that diminishes any form of collectivism and community, because on platforms such as Twitter the only community to be found is that which is focused on individual gain, status and piggybacking off others who are already prominent. 'Friendships' formed around who has liked our content, or who gives us the most exposure. It may appear a dismal outlook, yet it is an important perspective to have to be able to understand why social media platforms are exploiting us and turning us into people who laugh at travesties, or use world events to do little other than say something in a performative quest for attention. It’s neoliberal capitalism at its loudest, but no one is talking about it. Perhaps because we’ve reached a point where too many of us have become dependent on it. Its greatest protection is its culture of silence, denial and disinhibition. The solutions to these problems are actually clearer than we might expect. At an individual level, we first need to acknowledge this world we are a part of, and not blame ourselves by recognising that social media is a profit-based endeavour that shapes who we are. It is not realistic to say that we should all stop using social media, but greater awareness of its harms is needed. Awareness that goes beyond the usual ‘safe base’ harms associated with social media such as trolling, cyberbullying, or even simplistic attributions such as ‘it’s all Elon Musk’. Because there are other deeper problems also, such as those I have raised above. If we can do that, we might begin to start carving out a more promising outlook for a digital world that helps us to feel better about ourselves. One that allows for discussion beyond theatrics and emphasis on followers. We can all insulate ourselves by switching off or telling ourselves that these things are not about us, I know this well. But social media platforms are all about us because as users of these spaces, every time we create and share content we are working for attention, giving ourselves up to a world that we feel that we cannot change. Yet the truth is that it can be changed, starting with us changing how we use social media. By giving it less content, stepping back from the unhealthy attention-orientated behaviours that it promotes and starting to focus more on what it is actually doing to us - the anxiety, the worry over engagement being lower than usual, the questioning over something you may have shared. It’s all of these small things that are symptoms of who we are as digital citizens in a world that doesn’t work for us. We are the ones who work tirelessly for it to continue existing in this sorry state. Once we begin to recognise this and challenge it, maybe this will be the start of the recovery from our collective disinhibition and denial of the problems it causes. Join the discussion about this over on our forum.

I’ll be honest, after starting this project I realised that it was going to be more difficult than I initially envisaged. For a start, talking about Twitter communities isn’t exactly enticing, as well as that many of us don’t feel like we belong to one. We tend to just go online, speak with the people we know and at times perhaps speak with those we don’t know. It seems that hardly any of us really, truly believe that we are part of a community. Perhaps that’s why seeing such terms or phrases turns us off straight away. Because Twitter doesn’t feel like a community - it feels more like a place where we go to shout off or share, but do we really belong? I know that I don’t feel the same sense of community that there used to be, and maybe that’s because things are different now. Maybe as Elon Musk has made changes, people are walking away more and more, or changing how they interact now. Maybe it’s the world. As life has moved away from lockdowns and we’ve begun to spend less time online once again, perhaps those groups we were once a part of now no longer feel as important. Maybe social media isn’t really a place for community at all, after all, things move on so fast, how can we truly come together and stay together when there’s so much at play? So many different metrics and morals to navigate, not to mention the algorithms. Everything is changing by the day. I’m writing this post with Janis. We both have very different experiences and perspectives of how Twitter has changed as well as how we have each used it. Yet both of us have felt the dangers of online spaces. Both of us have faced online misogyny. Both of us have encountered harassment, and unwanted attention, events that so many women have endured yet so few have found support for other than changing our own behaviours and identities. In this sense, community is very real, because without the solidarity and support of groups that we identify with, maybe we wouldn’t still be online today. Whether you believe that a community is something that resonates with you or not, chances are you have been a part of one and still are today. Because as boring and abstract as they may seem as a topic, online communities are real. And the things that happen within these spaces are very real too. About Janis "I am a retired teacher. We have an autistic son in his late thirties who is now in supported living, but who has had a rough ride from the care system. He wasn't even diagnosed till he was 27 when we first mentioned the possibility to doctors when he was six months. I also cared for both my parents with dementia until they died recently, my mother in law and as is the way of things, acquired people along the way! I get very vehement and angry about the ways things have gone for our son and us. It's difficult to contain my fury that we have fought a system that in theory should be supporting us and him. When a child is born, you make it promises to care for and ensure a good life. We've done our best and it's currently not going badly, but we can't even relax and think that what we have achieved now after years of heartbreak is actually how it will be next year. Social Care is too precarious. Those with power care too little and our lives are too short now we are in our seventies." Like me, Janis doesn’t feel like an active part of any community but feels some groups are supportive… Janis: I don't feel that I belong to many online communities as such. I contribute odd things to debates about particular or even random issues such as autism, Brexit, caring or social care. I like the ones that carers put up because they are generally so supportive and kind. Political ones make me cross and I am angry with the consequences of Brexit and the amount of corruption and incompetence in our recent government. Twitter was a lifeline during Covid when we were locked up with our son who was made very angry and anxious by the lockdown. The only way to keep him calm was to nurse him, as you do with a sick toddler, so we were static and lonely. Going onto Twitter and looking for familiar voices meant that I could feel we were not alone in this challenging time even though we did appear to have been abandoned by the government and by social services. Laura: I agree with Janis, that before I was into photography and started to take part in sharing photos online, I found political discussions increasingly hostile. Like Janis, I also found the groups I was a part of supportive during the lockdowns, but I now wonder how much of that collectivism was real. Especially during difficult situations caused by other people in the same circles, it was difficult to speak out then and even more so now. I’ve retained my identity online (despite being advised by friends to opt for a pseudonym) but I know that this can make us more vulnerable too. This is what happened to Janis… Janis I reserved my identity, not particularly well, under a user name given to me by my son at the turn of the century and that freedom gave me the chance to express myself, perhaps with more anger than I would with my name open to the public. There's something about being restricted in words that mean that comments will be direct and not everyone reads the correct meaning so the protection of a false identity was useful. Even quite innocuous statements can bring out the nutters and sexists in full attack mode and that's not pleasant. I try to be polite even if a bit vehement, but people who respond are often anything but. I also used a moniker because I had experienced being harassed online with FB. I put up a swimming pool picture of me and my granddaughter and I was wearing a modest one-piece costume. Nevertheless, lots of random men began pestering and sending me personal pictures and it's difficult to feel safe when that happens. Nevertheless even doing that and using a neutral image of a candle didn't prevent all the nasty stuff. A well-known 90s comedian objected to my view that the song Delilah was misogynistic and went through my Twitter account finding irrelevant carer comments and posting nasty things about me. It was weird and frightening. Twitter has never felt entirely safe. Laura: Janis isn’t alone in this experience of harassment. I too have encountered online harassment, at times from people who followed me. Those I’d previously had friendly interactions with and who I thought I could trust. This has led me to disable comments on my tweets, as since these experiences I’ve always been on edge, worrying that it might happen again. When I did speak out I was initially met with silence, until others began to share their own experiences with me privately. This shows that it isn’t just an individual problem, but something that many of us are experiencing widely - and also within our communities too. Perhaps this is why we don’t identify as being part of a community when these spaces don’t feel safe? Janis also agrees that she feels that Twitter has changed recently. Janis: I used to value Twitter because I was able to put comments on the posts of accounts like the Welsh Government responding to their posts. Normally they don't respond or listen, but a popular Twitter post is difficult to entirely ignore, so I think that politicking in that manner is helpful for people who are campaigning.  It was nice to make friends with some carers too. One thing I have noticed recently is the number of very right-wing posts that appear in my timelines despite my disliking them. Random Conservative politicians are always appearing, but I have privately thought that one well-known Conservative politician is a dangerous and deluded man for a very long time. The reluctance of Twitter to address obvious lies is unpleasant. Free speech should not include racist, sexist or hate speech. The recent Golliwog debate is all over my timeline currently and it's infuriating as random inaccuracies are given the status of facts to 'prove' Golliwogs are not racist. I don't want to block because it is important to understand other people's arguments if you wish to understand other points of view. Nevertheless, some of the twaddle that appears is very triggering. Laura Janis also feels that some of the recent changes have left her feeling vulnerable, and at times angered surrounding discrimination that she has encountered on Twitter. Janis: Under my own name, I am attracting followers who really aren't interested in what I think or who I am. They are clearly bots; apparently young women with limited clothing as their image and lots of retweets about football. I block each one but sometimes four or five will try and follow at a time. It's difficult to keep on top of it. it's happening far more recently, and I wonder how many have slipped through the net and are hanging about gathering data. The other point is that many people who police sites that use offensive racist material are then perfectly happy to refer to racists as 'imbeciles' or 'cretins'. When I and others point to just how deeply offensive this is they refuse to acknowledge there is a problem with their language and dig down harder accusing us of being rude. It seems that for many, Twitter isn't about exchange or learning, but a convenient soapbox for people to air their prejudices, often at the expense of the very vulnerable. I never allowed my children to use terms like 'gay' as terms of abuse and to see well-respected liberals calling each other and me 'idiots' and 'morons' even when the issue is pointed out leaves me feeling that learning disability remains an acceptable prejudice. So, Twitter has definitely changed for me. I found it won't let me use my neutral identity and I am now online under my own name. My birthday was added to the identity, despite the fact I don't share it with anyone. Some of my favourite sites disappeared from my timeline as well. I found I had been unfollowed and also that the sites I follow no longer recognise me so I have had to go back and re-follow. I am not really that concerned to attract followers and don't understand that side of Twitter, but I was really miffed to find some of my favourite sites unfollowed by me. Laura: I admire Janis for not being drawn into the engagement aspect of Twitter. This is something that I really struggle with personally, which has caused me a lot of problems and paranoia. But it seems that something else is happening here too, changes in the algorithm and potentially being shown completely irrelevant content. This makes me wonder if we are really seeing those alike any more. Ok, it is important to not reside within an echo chamber but still, is this one of the things that is keeping us apart and making us feel more and more alone? Could that be why we are not feeling that communities are real? Towards the end of our chat, I asked Janis the following question; ‘What do you think is important for Twitter communities to stay connected in the future?’ Janis Twitter communities need to stay together because we learn by sharing experiences. The best advice I have been given has always been from other carers who understand how it is and don't make one feel awful for having negative thoughts. I'm not entirely sure I understand the intent of the third question, but private and public spaces are needed for the free exchange of ideas. Just police the bullying and hate speech with more care. Use tighter restrictions over the worst and if someone feels they are being bullied, then let them send the evidence and boot the pest offline.  We need powerful voices to speak for us and we need to band together to become that powerful voice. Laura: Janis’s final statement is so powerful. To overcome the issues raised here, we need to find each other again. The first step is understanding that online communities are very real and that we are all a part of them in some way. How do you feel about online communities? Are they important to you or something to be avoided? Feel free to let us know in the comments below or connect with us over on Twitter.

It’s the May bank holiday weekend. Like many people with social anxiety, bank holiday weekends are a hive of activity and a marathon attempt at trying to find things that provide us with space, quiet and some calm away from the crowds. So we often stay home, a place of privacy and at times sanctuary away from wider society. So here I am this morning, sitting at my kitchen table eating my breakfast with J, both of us still in our PJs and taking a gentle start to the day until I catch a glimpse of something from the corner of my eye. I looked up and couldn't believe it, there was literally a man standing there peering at us through the window. My first reaction was shock, after all, seeing a stranger at the window isn’t something we often expect outside of horror films. What’s more is that we had no idea what was happening and not being fully dressed neither of us felt comfortable to go outside and ask. After a curious call to the landlord, it transpired that it wasn’t someone coming to attack us, but a man cleaning the house. To many people, this may seem to be quite an usual thing, but we had no idea it was happening. For many of us with autism, unexpected social encounters are extremely difficult, but when one happens in the comfort and expected privacy of your own home it raises the question about privacy and how important this is. It’s now 10am, the man is still here and I’ve made him a cuppa. I have no animosity towards anyone trying to do their jobs and after all, this chap has given up his bank holiday to be here today. The issue here isn’t the task he’s doing, his sudden appearance or the noise it is creating but ultimately we weren’t told and that’s the key problem here. When we are in our homes, we often encounter unwanted sounds, smells and interruptions that we don’t expect but what is often not considered is how distressing this is for those of us who are autistic. Most of the time we are expected to put up with the world and its wants, our own needs rarely understood and in the case of today, not respected. Many people have a need for privacy, for many different reasons but for those of us who are autistic as well as living with social anxiety, this isn’t just a matter of privilege and luxury. It’s survival, away from the overwhelm of a noisy world that isn’t set up for us. So on a bank holiday weekend, when many people would have the option to get in the car and head out if an unexpected visitor arrived to carry out work on the house, those of us with social anxiety are trapped. Trapped between facing an outside world that is too busy or our home being invaded by the outside. The problem is that how we experience the world and its challenges remains misunderstood. All too often we are perceived as overly needy or difficult, our voices shut down. So from this experience that is happening here today, here are three reasons why privacy is so important for those of us with autism, and why we often have so little of it. 1. We often rent or live with family Firstly, without bringing in vast stats or figures, we know that people with disabilities often live precarious lives, facing difficult choices between economic security and protecting our health. For this reason, it is often the case that many of us with severe social anxiety are unable to hold down jobs, relationships and access to a home often contingent upon what support is available to us. Whilst some of us may live in quiet locations, many of us rent or live with family and friends. Of course, there is generally nothing wrong with either of these options, but for those of us with complex sensory needs, our sense of privacy and sanctuary can be blown apart by factors outside of our control. It can be as simple as a window cleaner turning up unannounced, or friends of your parents popping around for tea. These examples may sound fairly benign, but for those of us who are autistic and live with the menace of social anxiety, they can be disastrous. 2. Privacy comes at a cost It goes without saying, privacy is expensive, we all know that. Whether it’s housing or other things in life such as where we can go on holiday or how we can travel, if we want to do any of these things with privacy we have to pay for it, and often through the roof. For this reason, many of us with social anxiety end up not being able to do anything as we can’t afford to. Going on holiday becomes an array of additional costs to avoid noisy neighbours or the sensory overwhelm of being in a loud and busy place with nowhere quiet to retreat to. We cannot just put up with a bit of discomfort to be able to travel, and we often cannot afford to upgrade to first-class or premium spaces to be able to avoid the crowds. Many of us face these disadvantages, true enough, but for those of us with sensory needs, we cannot simply put up with the discomfort of the budget option. Our only choice is to spend big or stay home. More often than not it’s the latter, meaning that many of us who are autistic with sensory needs become excluded from living. 3. People don’t understand that our need for privacy is not about privilege As I write this final section, I am staring at my screen with a loud conversation happening right next to me at the window. Right now I have no privacy, and I know that I cannot just go outside to escape it. Although I know it will come to an end, I don’t have the privilege or the power to be able to talk to my landlord and ask them to inform me next time this is going to happen. That would make things too awkward, too uncomfortable with us all living on the same site, and I've lived here for so long, it’s just not a risk I can take. What many people don’t understand about the need for privacy is that for those of us with social anxiety, it is not about privilege. We don’t need to live in a big manor house, or holiday in isolated villas away from everything. Those things are luxuries, and whilst they are nice, it’s not what we crave. We just want to be able to live quietly in a way that doesn’t cause us shock, distress and the need to continuously run away and avoid everything. If someone was to ask me what privacy would look like for me, I would honestly say that just a simple understanding of our sensory needs would go a long way. Had my landlords understood and respected the full extent of sensory overwhelm caused by a man appearing at my window today, perhaps small things could have improved this situation. Perhaps they could have asked the man to knock on the door first, or perhaps they could have called or messaged me to let me know that this was going to be happening? Outside of my own situation, maybe understanding what autism is and how social anxiety affects people would create a society where privilege isn’t such an aspiration, because people could learn to respect the needs of others in a way where privacy comes more naturally, without a price tag affixed. The point being, is that as autistic people, we aren’t looking for status or to have something up on others, we just want to be able to live our lives in a society that is more open to who we are. One that respects the need for quiet, the need for less social interaction and overall privacy as a need and not a privilege. Do you have your own story where your privacy hasn't been respected? If so what did you do? Feel free to share your comments below or connect with us on Twitter.

Twitter is changing, and so are its communities. In this series of articles, we talk to those who know the platform best. Its users. From carers to photographers, and artists to disability rights campaigners, there is usually a Twitter crowd for everyone. But what happens when this breaks down? What happens when algorithmic anarchy shatters the communities we once held dear? This week we talk to Matt, an artist, introvert and good friend of Aunty Social World. Matt has been a Twitter user for just over 10 years, and more recently has played an active role in Twitter's arts and small business communities. As an amateur artist, Matt has recently started to branch out into selling his artwork through his own brand, Where the Dark Things Are. Matt has had a varied working life; from being a children's nurse, a museum officer, an education support lead (work experience and foster children), and a Bereavement/Coroner's officer -so has developed a great understanding of supporting people from various backgrounds, including those who are neurodivergent and those who are part of the LGBTQ+ community. Despite all this, Matt says that he still has no idea what he wants to be when he grows up. With his insider knowledge and wealth of experience, we were keen to hear Matt's thoughts on the recent changes at Twitter and the effects this has had on its communities. Over to you, Matt... The interview - Matt James What do online communities on Twitter mean to you? The online communities that I take part in the most are the art communities in all honesty. Art 'moots' (mutual followers) and also small businesses with USPs that appeal to me. The art community has always been very welcoming and supportive, and as an introvert and someone who doesn't deal well with face-to-face communication, I think I have made some friends that I can lean on when I am down, but also understand when I am not as engaging. In regard to the small business community, I feel good about supporting people who are trying to live out their dreams, even if it is the odd like, retweet or discussion about their work. This gives me a sense of purpose aside from my own personal work and employment, which helps me separate from that when imposter syndrome kicks in (which it does a lot). Has your experience of online communities on Twitter changed? If so, what do you think has caused this? Unfortunately, the development of ad-driven threads (ads not just in the basic timeline, but also in personal conversation threads) I do NOT like this. Also, the AI art discussions and the difficulties in general that artists have experienced in sharing their work in order to market and promote themselves have led to many of my art 'moots' leaving Twitter, or not posting as much as usual. This has also led to a drop-off in engagement. I had a lot of interaction and have a decent Twitter following (over 500), but how many of these people are now fully active is not as much as it used to be. The algorithms are certainly not helpful in this regard. The various attempts by the new owner of Twitter to 'improve' the basic site have not been successful, or encouraging for creatives. What do you think is important for Twitter communities to stay connected in the future? I fully believe that the ability to share (art and creative news) and a small summary is a very good and successful approach to running social media, and being able to link, follow, and share, is superior to other 'socials'. Instagram is basically a photo album (sharing what I like is a trial), and while Tik Tok has its benefits, is very narcissistic. Tumblr had a resurgence due to the problems Twitter has had but seems to have lost its integrity as a way to communicate effectively. I honestly feel the Twitter base model has a better way of engaging a community in a positive way than other social media platforms, and if you can sift out the rubbish, it will shine. However, saying that, the ability for trolls to remain on the site is something that needs to be looked into. Moderators for chat forums were a thing in the past, and I wonder if it needs to be looked into once again for a site like this, which has various fan groups, and creative communities, that can feed abusive engagement and victimisation. Twitter communities need to support the individual more, perhaps with moderators that are nominated by the communities, and offer better engagement without prioritising monetisation. IMHO Do you still see yourself using Twitter in twelve months' time? I will likely be using Twitter in 12 months' time. I enjoy the no fuss interaction (I can involve myself as much or as little as I want), the shared creative energy, and support. The only reason I can see for lack of use is if the communities I interact with are unable to share as they used to, and the people who are attempting to market their businesses are forced to use a different platform, or changes made by the CEO would mean a subscription fee. My hope is common sense prevails, but if not, I would undoubtedly find other ways to support my Twitter moots, and stay in touch. After all, despite challenges, humanity always finds a way to communicate, for better or worse. There's plenty of pigeons in the back garden. Matt is not alone in thinking that Twitter has changed. We've noticed it. People we talk to every day are noticing it too. Engagement seems to be at an all-time low and once-familiar faces are nowhere to be seen. For those of us who are left, it can feel isolating and frustrating that the communities that once thrived now feel like empty shells. But as Matt points out, where else do we go? Even this new version of Twitter is still miles ahead of other platforms when it comes to actually connecting to like-minded folk. How do you feel about the changes at Twitter? Is Twitter now broken beyond repair, or is there still hope for the future? Is it the platform itself that is to blame, or are people themselves changing? We would love to hear from you. Share your thoughts in the comments below or connect with us on Twitter (we haven't given up on it yet!). Finally, we want to say a big thank you to Matt for taking part and giving us his honest opinions about Twitter. You can follow Matt on Twitter or visit his Red Bubble shop here.

Opening up Twitter today, there’s a lot of anger. Following the change of yesterday, blue ticks as they were may be gone but true colours are being shown right now. Journalists, celebrities, influencers, and anyone who had the former privilege of a verified account are all shouting out in anger. Their usual breezy personas and carefully crafted online identities all thrown into disarray. Because losing that tick is more than just verification, it’s status, it’s culture and it’s the well-defined line between us and them. Load up Twitter today and ranting tweets are filling up timelines with various digitally mediated attacks, mocking those who have ‘actually paid’ for a Twitter Blue subscription. There are two reasons for this, one being the official line and the other being something deeper. It's personal, it's neoliberal and it hurts the hierarchy. They had their status and now it has been taken away. The official line amidst all of this anger is that these former blue tick people are angry because they can no longer be verified, they’re worried about misinformation or being impersonated. It is perhaps these people who are the greatest critics of Twitter Blue. They don’t believe that paying for a subscription is a ‘real’ blue tick. People who do so are stereotyped as ‘stupid’ or lesser in some way. After all, by bringing everyday people into the world of blue ticks, there is no longer an aesthetic division between us. So invalidating those who pay for a blue tick is a logical tactic. It dehumanises these people, makes them appear as a bit ‘simple’ or egotistical in some way. Blur the lines between different social classes and this is what happens. Everyone had their place before, it was stable and understood. So when those positions become threatened, it's going to hit hard. Especially for those who believe that they are of greater worth than someone with a handle of followers. It's that fickle. We cannot underestimate what the blue tick symbolised before Twitter Blue subscriptions came into play. For years, the blue tick has been widely understood and normalised as the distinction between those at the heights of success and the average Joes. More so than likes, or follower counts, the blue tick is or at least was the absolute peak of Twitter success. It’s the ultimate symbol of worth in a neoliberal attention economy that saturates almost every aspect of our online lives. Hierarchies are the absolute centre of what Twitter was and remains to be today. The only difference with this change is that those who were given a high-status position just for being who they are now need to pay. Just like the rest of us. It’s not about affordability for those who have money, it’s the principle of being treated like everyone else. People who they perceive as beneath them in the class hierarchy. People who have less, people without status. On the other hand, and this is a valid argument, there is anger from everyday folk too. Those who use Twitter but maybe cannot afford to pay for Twitter Blue which is more relatable. After all, for many of us it’s costly and not just financially. I’ll be completely honest, we do have a Twitter Blue subscription for Aunty Social World's Twitter. Because right now she’s young and as we’ve seen of late, we’re in a state of algorithmic anarchy. Building a following or movement doesn’t come easy in the world of Twitter today. Yet where we are now in an era of attacks coming in from both the privileged elite, enraged at the peasantry being offered the same as them, or our allies blocking and mocking us - I think the argument missing from all of this is that for some of us, we need Twitter to survive: https://www.auntysocialworld.com/post/social-media-attention-is-survival If budgeting for a blue tick helps in the world Twitter has become today, then so be it. Because not all of us have countless options open to us, we are mired in a status-driven attention economy that doesn’t care who is disabled or who is in need. Attention isn’t always about ego, it's quite often survival. Whether you are a proponent of this change, or angered by it, what we can agree on is that Twitter is changing and for now, none of us truly understand where it is going. But coming together and resisting the urge to attack others, will help collectivism in the future. Because attention economies are already highly individualised and divisive, blue tick or not that hasn’t changed. But we can stand against this by coming together. What do you think? We would love to hear your thoughts. Comment below or come and connect with us on Twitter.

It was the start of another day. I reached over to my phone to tweet what I was feeling but then stopped myself. After doing this so many times before, I knew that it was unlikely that I'd hear back from anyone, that or I’d just end up being muted or unfollowed once again. One thing I've learnt of late is that no one really wants to read your early morning emotions. A good morning pleasantry or something equally light-hearted is fine, but not the deep stuff. That's the stuff that will keep you silenced for a week. One moment of emotional indulgence and you're out of the game. Same with humour, a lesser blow but it's so cringe sharing something that you think is funny when everyone else stands silent or says 'What do you mean?'. Story of my life. It's not just direct engagement. Since I set my account to private last year, around 300 people have unfollowed me. Some of whom I thought of as friends, others friendly acquaintances, hardly any that I can recall falling out with. I don't know why, and after all, this is Twitter. Nobody owes anyone anything. But still, it’s more noticeable when your account is private as unless you’re a rock star you don’t really get too many follow requests. There may be some who say that they don't care or notice when unfollowed, but really, deep down it can feel so personal, especially when it's someone you used to know and engage with regularly. My own experiences aside, I think many of us would agree that Twitter is a very different place now from what it used to be. Lots of people have been angered by the changes made to the platform itself, the monetisation, Twitter Blue, the new hierarchies and polarisations forming around these features. Others have become tired of seeing the same old behaviours, content and debates, or they themselves are burnt out from repeatedly sharing content that remains unseen and undervalued. I know that on some days, I wake up and think, shall I just not bother today? Because being on Twitter, giving it what it needs to get you seen can be absolutely exhausting - working for an algorithm with no pay and often no reward becomes arduous, perhaps even exploitive? For anyone reading this who doesn't use Twitter, you might be thinking 'Why bother?'. It's a good question, and honestly, I've been close to closing down my account and walking away so many times. Because sure, it is absolutely fickle at times (like many other social media platforms), but this aside it's also a place of community. When you find the right people and communities through Twitter it can be life-changing. The problem is that these communities and connections seem to be diminishing today, gone are the days when we could go online and be ourselves. In the present day, it has begun to feel that to fit into any sort of group or community on Twitter, you need to adapt yourself to be a breezy positive person, that or you need to churn out the same slogans, memes and images every single day. Anything different or even slightly 'negative' is immediately shirked, and we seem to have lost our ability to have deep conversations. Sometimes it feels like we're in the Truman Show. Whether it's Twitter changing, people changing or both, we definitely seem to be in an era of transition. An era where people are feeling more isolated, less connected and our online communities that we used to turn to seem to be fading away. This has made me think a lot and raises an important question... Are we really still together when the cracks in our communities seem to be getting so deep? This is something that I recently asked people on Twitter. The response was unanimous. People said that they felt that things have changed, and not for the better. At the centre of these responses was a theme. One which highlights how important our Twitter communities are, for friendship, wellbeing and coming together with others to share our experiences. Something so important for those of us who are otherwise isolated. For all of its flaws, it's also perhaps one of the most powerful digital spaces there is for a sense of community. The problem is, that aside from these recent changes that are potentially fracturing our communities, online communities generally remain invisible, unseen and often misunderstood. We don’t tend to talk about how they are more than just a hashtag or other visible symbol. Many of our communities on Twitter are just out there in existence, without any clear visible trace. They aren’t even formally organised or structured as they just seem to happen. People come together and friendships are formed. Another issue is that our understanding remains limited as so much research into online communities focuses on specific groups with a focus on issues such as extremism, or it depends upon the visible features such as the hashtag for ease of data collection. What is missing are the voices within these communities. The voices of everyday people living out their everyday lives. Those who may not even identify as being in a community, yet are such an important part of it. So that's what sparked this project. We want to bring a new story and narrative about what online communities really are and why they are important. Because until we understand them in this way, how can we truly keep them safe and who will care about these changes if their importance isn't more widely understood? These are just some of the reasons why we need this new story, one that comes from the people within these communities. In this series of articles, we're going to share the perspectives of others, people from diverse backgrounds each with different stories to tell about what their Twitter communities mean to them. The good and the bad. This week, me and my good friend Mike are going to chat with you. We’ve both encountered different communities and have different life circumstances, but there are some things that we share. Mike is an unpaid carer and Unpaid Carer Representative with the Cardiff and Vale Regional Partnership Board, as well as an active voice in the carers' community on Twitter. Find out more about Mike here: https://caring-life.co.uk/home/ I myself have disabilities and I’m cared for by J, so here at ASW, we are both greatly inspired by what Mike does. Both Mike and I suffer from depression, and the communities we have been a part of are important for us both to be able to connect and feel less alone. So, here it is, the first of our stories... Interview 1: Me and Mike 1. What do online communities mean to you? Mike: During the early and darkest days of the lockdown at the beginning of the pandemic I was thrown a lifeline in the form of social media. Before I joined Twitter I often felt alone and like I was the only one facing my particular challenges, but from connecting with others I learned that although it's not exactly the same, others had similar challenges they were also facing. Those early days of Twitter saved my sanity, and I will be forever grateful for the connections I made during that time and since. I also look forward to making new connections. Laura: I sort of flit between different online communities. My earliest experience of feeling a sense of community was probably when I started out with my photography during the COVID-19 lockdowns. Before that, I’d only really used Twitter for news and politics, so when I started to share my photos I was surprised at this new world of friendship and collectivism. Since receiving my autism diagnosis I can honestly say that Twitter has been life-changing - I have learnt so much by following other people and reading their stories. It allows you the space to share your version of normal, which is usually deemed weird. But then, when you find your community and tribe, it’s completely normal. I cannot express how validating that is when you’ve been the weirdo or outcast for so long. So for me, online communities are essential for identity, belonging and creating change in the wider world. 2. What recent changes have you noticed about Twitter communities? Laura: I was on a Twitter break for a while last year, and when I came back I couldn’t believe it - everything had changed. People who I’d followed for years had vanished, I have no way of ever finding out where they went or if they are ok, as they didn’t have full name accounts. Overall, the sense of community was completely depleted. I don’t know whether this is just my experience but it seems that people don’t really want to chat like they used to - that or we’re just not seeing each other anymore. It’s quite an unsettling feeling, almost a paranoia as you see one of your previous friends on your timeline but they never interact with you these days - so you don’t want to roll in on their tweet just in case they ignore you or it makes you or them uncomfortable. Social anxiety is a thing online too! I think that going to a private account has amplified my feelings of disconnect if I’m honest, that and the changes in the algorithm. It just feels that interactions now are more chance encounters than solid friendships - it all feels very unstable. Mike: At some point last year when Elon Musk came along with his bags of money, deciding that he wanted to buy Twitter and turn it into a ‘market square of free speech’. Well, it didn’t quite turn out that way and Twitter now feels more like a place where you need to pay to gain the full advantage of Twitter. The consequence of this is that Twitter now feels more and more disjointed, and within our communities, I find it’s becoming harder and harder to connect with others. It’s beginning to feel like people or our communities that we’ve created are simply being treated as a hashtag, a part of the algorithm or a source of income for a man that already has more money than many of us could ever dream of. For some Twitter can be their main or only form of social interaction with others and a great source of comfort and support, but those interactions now appear to be dwindling away before our very eyes. I know there are other forms of social, but for many, the thought of starting over is simply unbearable, so the challenge we have now is finding a way of keeping our communities together or risking having them scattered to the four corners of the internet. To many of us, these communities are far more than just a bunch of random strangers on the internet, they are a very important and valuable way of keeping our sanity and even making new friendships. Having connected with people on Twitter I’ve also connected with some of those same people in the real world and if it hadn’t been for Twitter we may never have met and made those connections in the first place. 3. Have you needed to change any of your own behaviours? Mike: From my own perspective, I’ve had to go hunting for people that I used to see regularly on my timeline, but now unless I go searching for them, I rarely see them anymore. The amount of hatred and vitriol on Twitter has also gotten out of hand to the point where people are afraid of posting for the fear of what might happen or be said if they do. Many a time recently I’ve wanted to post something about my depression or an opinion or about something happening in my life, but after writing the post I’ve sat there with my finger or mouse cursor over the post tweet button and then decided to just delete the entire tweet because I don’t want to deal with any potential fallout. Twitter was in the past a place where people could be open about their struggles and challenges, but now it feels more like a place where we all have to conform to some set of unwritten and unseen rules or we get singled out as a troublemaker or attention seeker. It’s a real shame that one man has single-handedly managed to destroy something that in the past was so good for so many. But when you are as wealthy as Elon Musk is I suppose you can afford to buy a new toy and play with it until you’ve completely destroyed it, before discarding it and moving on to the next project. Laura: This is an interesting question. I have definitely changed my own behaviours but I think this is partly due to my own personal interests and motives transitioning. I take a very critical position on the world which isn’t generally well-received in some of the communities I’m in. I think part of the problem I have is that I’m sort of on the fringes of several very different communities which causes conflict and I can never please everyone. So I’ve stopped trying. That doesn’t mean it doesn’t hurt though when friends walk away or start ignoring you. I’ve also recently seen a huge increase in people being launched upon with stigma for speaking openly about disability or mental illness, which is just horrible. For some of us, our Twitter communities are the only place where that version of normal is accepted - because for those of us with severe health problems sadly this is our normal. Sadly, so many of us are now feeling we have to filter or restrict what we say, just because others won’t approve. It’s taught me that digital stigma is a very real problem that needs addressing. 4. What do you see as being the main barriers for our communities in the future? Mike: Polls are just one example of how Twitter is slowly going to become a ‘market square of free speech’ for those that can afford to pay only. I mean, would you pay a fee every time you went to the polls to vote for the government or to vote for your local MP or councillor? I very much doubt many would, so why should we be expected to pay for the privilege of voting in a Twitter poll? Also, if I don’t want to pay to have the privilege of seeing my Tweets in the ‘for you’ tab then give me the option to remove that tab. Laura: I think that as Mike has explained, accessibility to community spaces is going to present a problem for many people as Twitter becomes increasingly monetised. It also amplifies issues surrounding the online attention economy that we are a part of. It’s never been a level playing field in terms of being seen and gaining engagement which will potentially worsen if visibility is centred around who can afford to be seen. My concerns here are the impact this will have on our friendships within communities. How will we know who is truly interacting with us as a friend when the need for attention is so rife - and not just for aesthetics either? For many of us, we need to be seen to survive financially and otherwise. That as well as certain behaviours being restricted such as what I explained above about digital stigma - if we create a culture where self-expression is limited to pseudo-positivity and little else then what does that do for our communities? Finally though, I think it’s really important that we don’t fall into the trap of ruminating over a utopian Twitter past. Because it wasn’t great back then either and all of these same issues were a concern back then too. It’s perhaps that because things are changing and we’re feeling a bit rocky, we are now suddenly paying more attention to them rather than them being new problems. So as you can see from both Mike's and my own experiences, we feel that Twitter has changed, but whether that is due to its owner or something wider, this is complex and cannot be answered in one article. The important thing for us all to consider is what will happen to our communities if people are no longer engaging or able to be how they were previously? Will these spaces disappear or perhaps change into something different? These are just our two perspectives and there are so many more out there. Stories that show different insights on these questions, stories that come from those within these communities. Deeper insights into exactly what is happening within different Twitter communities today. For anyone else who would like to contribute towards this project - your voice matters too. If you would like to add your own story or experiences, either anonymously or otherwise, feel free to get in touch with us. We currently have a private Twitter group chat running, you are welcome to join us :)