Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.

Grateful 2019

This year has been a weird year, something I don’t really want to get into until I do my end of year review. But it has been a weird year and with all the medication changes and mental health issues, it’s only the last three months that are really clear in my memory. I’m very aware of being grateful – there’s so much to be grateful for – but having had such a fuzzy brain, I feel sure that I’m forgetting things, something that’s causing me a lot of anxiety. Pieces of the year are just missing from my memory, whether blurry or plain misfiled, and so I worry that there are moments in there that I should and would be grateful for if only I could get a grasp on them. But I can’t. So this is the best I can do. Please forgive me if I’m leaving things out.

My Mum – I always list (or shout out) my Mum because she is the person that I am most, most grateful for. Being the person I am with the disabilities I have, I couldn’t survive in any way without her and for that, for her presence, I am so grateful. She goes above and beyond to help me through the bad days and achieve on the good days and I’m just in awe of her. She is the most caring person I know.

Richard (my best friend and writing partner) – During the first part of the year, Richard and I planned an EP that we were both so, so excited about. And then suddenly, overnight it felt like, that excitement disappeared for me. It was replaced by paralysing anxiety, so bad that I couldn’t even talk about the project. It was awful. But we got through it and the EP – Honest – is now slowly being released, all of which is largely because of Richard, both practically and emotionally. And that’s just our working relationship. He’s always there to text me shitty jokes, to help me write songs when I’m banging my head against the wall, to eat sweets and watch The Good Place with. I don’t know what I’d do without him.

My Family and Friends – I often give a specific shout out to Mum and Richard because they seem to be the ones who most commonly see and help me with my bad days and my anxieties but the rest of my family have also been amazing this year. They’ve always been there when I’ve needed them. I haven’t seen many of my friends as much as I would’ve liked to this year. Between the depression, the trying of different drugs, and starting the Masters, it’s been a messy and complicated year that I will write about more in my end of year review. Hopefully I’ll get to see them more next year.

The animals in my life – We started the year with our dog, Lucky, and three cats, Lucy and her kittens, Mouse and Tiger. We’d dabbled with the idea of Mouse having kittens, just to do the kittens experience one more time, but just as I changed my mind – it was too much change and I needed everything to stay the same – we came home and Mouse was having kittens, despite the vet telling us the week before that she wasn’t pregnant. And now we have two kittens in the house, two black furballs called Sooty and Sweep. They’re gorgeous and them, plus the rest of the animals, have really helped me with my anxiety (which has been overwhelming) over the last three months and that has been so, so important.

My Masters Degree group – Starting a new course or a new anything is always scary and for me, the scariest part tends to be the new people. Fortunately, I’m doing my Masters course at the same uni I did my BA so that was really the only new thing. But I got really lucky: I ended up in a really small group and they’re all really lovely people. It feels like we’ve gotten to know each other pretty well and we’re all so supportive of each other. The groups are going to change somewhat after Christmas but it became a really safe environment, creatively and personally, and I’ll really miss it. I know I’ll still see them and our friendships won’t suddenly end but I’ll miss our little pocket in space and time.

My benefits being renewed – Given how scary the political climate in the UK has become and continues to become, I am so, so grateful that my benefits were renewed before the election and will last until just before the next election, regardless of what happens in the next few years. That was such a relief to learn. I don’t know what will happen after that but for now, I feel like I can breathe a little bit easier.

Red Bull – The major side effect of my current medication is this overwhelming sleepiness. When I told my psychiatrist about it, he said that it should wear off but that it could take months. I’d been drinking Red Bull to help me stay awake and help me concentrate; we discussed the fact that it’s not massively healthy but it’s his opinion that the sleepiness will wear off, hopefully within a few months and then I can give up my Red Bull habit. So we’re keeping an eye on it and in the meantime, Red Bull is my best friend.

Fanfiction – In times of great anxiety, I’ve reverted to a major hobby of my early teenage years. I read stories from every film and TV show I loved and wrote reams of the stuff. I’m not writing it this time around but reading it and getting lost in new stories from familiar worlds has been a very effective calming strategy. It’s made me feel safe. And it’s kept my creativity (always stifled by my anxiety) burning low, in the background, for when I’m ready for it.

His Dark Materials – I have been in love with this show from the first episode. I honestly can’t remember the last time I was so impressed by and excited about a TV show currently airing (I’ve fallen in love with shows after they’ve ended, for example). Daphne Keen is an incredible Lyra and Ruth Wilson blows me away every episode as Mrs Coulter. The sets, the CGI, the characters’ relationships with their daemons, the complexity of the characters, even the introduction sequence are absolutely extraordinary. I’m so gutted that the series is over but I can’t wait for the next one.

Taylor Swift – I’m pretty sure I’ve always mentioned Taylor Swift but I probably always will. Her songwriting is incredible, she’s one of the hardest working people in the music industry, she’s generous, she’s intelligent, and she’s exceptionally kind. She’s one of my favourite singersongwriters and her recent album, Lover, is so, so good: one of my favourite albums of the year, possibly one of my favourite albums ever. It’s beautiful and vulnerable and special. She’s also been saying some very smart and very important things during her recent press cycle:

  • “I’m a woman, I’m not a coat hanger. I need to feel healthy in my life and I need to take pleasure in food and I need to not use my body as an exercise of control when I feel out of control in my life.”
  • “Do not let anything stop you from making art. Just makes things. Do not get so caught up in this that it stops you from making art or if you need to, make art about this. But never stop making things.”
  • “You’re not always going to be inspired and that’s okay.”
  • “If someone’s gonna take your hand, they’d better take your hand, scars and all.”
  • “I guess what I’m trying to say is that all any of the artists, or really anyone in this room wants, is to create something that will last, whatever it is in life. And the fact that this is an award that celebrates a decade of hard work, of art, and of fun and memories, all that matters to me is the memories that I had with you, the fans, over the years. We’ve had fun, incredible, exhilarating, extraordinary times together, and may it continue! Thank you for being the reason why I am on this stage, from the first day of my career until tonight.”
  • “I think that artists deserve to own their work. I just feel very passionately about that.”

And lastly, she’s fearlessly standing up for artists and their right to own their music. It’s a big, hard fight but she’s using her platform and her power in the industry (“as your resident loud person”) to try and change that. Of course, she’s personally affected by it but she could handle it in private. Except she’s not: she’s speaking out and working to create change. And as a new artist, I really appreciate that she’s trying to make the industry I’m entering fairer and less discriminatory.

I think I’ll stop there. I’ve got my Christmas wrapping to do and a Christmas tree to guard from some very inquisitive cats. I hope you all have a safe, happy, and healthy Christmas where you feel as special and beautiful as you are.

EDIT: Honourable mentions to Nashville and the lovely people there, Agents of Shield, and fairy lights. But if I keep going here, we’ll be here until 2020.

2018 in Review

This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.

The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.

I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.

I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.

And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.

Having said all of that, there have been good days, as well as good experiences on bad days.

By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.

I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.

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I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.

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There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.

And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.

I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.

Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.

So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.

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“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)