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.

January 2020

January was tough. A lot of difficult things happened. Normally, I wouldn’t do a monthly round up but there were several things this month that I didn’t think would get properly acknowledged (in my yearly review or otherwise) if I didn’t. So here’s January 2020 and it’s highs and lows…

  • Assessments and meltdowns – I began the year working frantically and anxiously on assessments for the module I’d just finished. And as soon as I’d finished the essay, it was onto preparing the presentation, which absolutely terrified me. All of the work with no rest and all of the anxiety caused so, so many meltdowns. So it was a very stressful start to the year.
  • Presentation – My final presentation was very stressful. I worked ridiculously hard on a powerpoint presentation and script that described my progress throughout the semester with snippets of the songs I’d written and I thought I’d done okay but I was and am upset with my grade, mainly because the ‘good’ and ‘bad’ feedback I got seems to contradict each other. There’s this thing we have called Results Counselling (or something similar) where we can go and discuss it all, which I’m gonna do as soon as I can get through it without crying (not just about the grades – it’ll come up later). Whether that will change the grade or not, I don’t know.
  • Choosing my timetable and beginning the new semester – My uni are really helpful about working with me to find a timetable that was best for my health, mental and physical. I really appreciate that they do that. I know that, as a disabled student, they have certain obligations to help me but this is something that causes me a lot of anxiety so I do really appreciate it. Special thanks to Ivy and Aislin for their help. And then the semester began. I’ve swung from overwhelming anxiety to calm and back again so many times that I’m dizzy. Right now, I’m okay. I think.
  • ‘Clarity’ came out! – The second track from my EP, Honest, was released on the 10th and for what is essentially a second single from an independent artist, it’s done really well. It was added to several playlists with lots of followers and it’s been played on a handful of independent radio stations, including Get In Her Ears, which I’ve followed for a long time. So that was really cool. It’s also had quite a lot of airplay on a couple of local independent radio stations, which feels very special even if bigger stations are ‘better’ for my career – their support means a lot to me. It’s been a lot less stressful and a lot more exciting than the release of ‘Bad Night’ (although that was probably because it was the first one and so all new and unknown). Having said that, there’s still a lot more to come…
  • My First DSA Assessment – As you probably remember from this post, it was a bit of a disaster. It was incredibly upsetting and we were basically told I would get no support as a disabled student. Things have changed a bit since then but I don’t want to talk about it until I actually know what’s happening, until it’s more than just speculation and hope.
  • Semester B – We’re only four weeks into the new semester so we haven’t gotten that far yet but it’s definitely difficult. Much like the first semester, the content is really interesting but there’s a new challenge this semester: the academic language. A lot of the time I have no idea what the texts are saying and that’s pretty distressing. It makes me feel stupid and like I’m not smart enough to complete a Masters and ‘what the fuck was I thinking trying to do this?!’ Just as I thought I had a question for my assessment essay, I decided it was too complicated and now I’m waiting to hear from my tutor about it. I feel frozen. It’s hard to research when you don’t know what you’re supposed to be researching, a problem I had last semester although in a different scenario. I’m doing my best though and I’m doing my best not to panic. But I’m keeping up with my writing and I’ve written songs that I like so that’s keeping me grounded even though they don’t get assessed. But it reminds me why I’m doing this: to write better songs.
  • Manic by Halsey was released – I love Halsey and I was very excited for this album and (Hurray!) I absolutely love it. It’s so different from Badlands and Hopeless Fountain Kingdom but they were really different from each other; there’s progression and evolution and exploration. This one is particularly emotionally vulnerable and to me, the often acoustic production reinforces that. I love all of Halsey’s albums and I think this one is the perfect next step. I love most of the songs but my absolute favourite are ‘Ashley,’ ‘Graveyard,’ ‘You should be sad,’ ‘More,’ ‘Still Learning,’ and ‘929.’
  • Sharné visited – One of my best friends from uni came to visit me (and my cats) and we had such a lovely weekend. We went to the beach at golden hour, made cookies, watched movies, and played with the cats. It was so, so nice. I had such a good time. She’s the best.
  • University gig – The full time students on my course put on a show and it was so cool to hear the songs they’d written and it was so, so nice to see my friends play and get the recognition they deserve because they’re such talented, hardworking writers. It was such a good gig and I wish I could’ve stayed to the end but I had to get home to Brighton.

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(Luce Barka performing ‘Be More Kind’ – a very beautiful, meaningful song.)

  • Richard visitedRichard came down to visit me (and, again, the cats – I’m sensing a theme) and we did some writing and production, which was really fun, especially given that I was trying some new things. We also worked on some stuff for the rest of the ‘Clarity’ release cycle and for the release of the next song. Ooooh…
  • BeFries closed – My favourite restaurant in Brighton closed this month temporarily and then permanently and I’m absolutely gutted. I loved that place, I loved the food, and I loved the people. I’m so, so sad that it’s gone and I genuinely don’t know where my new meeting spot will be because that’s where I took everyone.

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  • Announced ‘Clarity’ music video – I announced via social media (I’m having major problems updating my website for some reason) that the ‘Clarity’ music video would be coming out in early February! I’m so excited for everyone to see it! (It will have gone up by the time I post this but this is where I am right now…)

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“I’m so, so excited to announce that the music video for ‘Clarity’ will be coming out Friday 7th February! @rsandersonphoto and I had such so much fun shooting this and there’s a pretty cool surprise in there so we hope you love it as much as we do!” (x)

  • Cheer – This might seem small compared to some of the other things on this list but I watched it after hearing all the good press about it and it absolutely held up. It was shot beautifully and the pacing was really good. The stories of all the cheerleaders had me so invested in each of them and their places in the series, and in their futures. I cried in almost every episode.
  • The Grammys 2020 – I have many, many  opinions about The Grammys, about who should’ve won which awards (*cough* Taylor Swift for Song of the Year with ‘Lover’ *cough*) but mainly I’m just super happy that Natalie Hemby and Sara Bareilles won their first Grammys. I can’t believe that this is a first for both of them, given how freaking talented they are and how successful they’ve been but regardless of that, this is amazing news and I’m so happy for both of them.
  • Waitress with Sara Bareilles – The best moment of the month was seeing Sara Bareilles on her first night as Jenna in Waitress the Musical in London. She was incredible. The whole show was amazing but she was a magic all of her own. When she sang ‘She Used To Be Mine,’ (which I know is a special song to her and is a special song to me too) the standing ovation went on for so long that eventually the only way to stop us was to continue with the show and therefore force us to sit down. She was truly awesome and I felt so lucky to be there. I’m fortunate enough to get to see her again before her run finishes and I’m so, so excited.

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  • Track of the Day – In the interval of Waitress, I discovered that ‘Clarity’ was going to be Track of the Day for BBC Introducing in the South and played on the radio, on a show I haven’t been played on before. So that was massively exciting (apart from some confusion about the date). Fortunately, I wasn’t in class when they played it so I could listen and enjoy the feeling! Hearing yourself on the radio, hearing people introduce you and your song and spread the message you’re trying to spread is so special.

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  • Lucky – If you follow my social media, you’ll know that we had to have our family dog put to sleep in the last days of January. We first met him when he was a couple of days old and he would’ve been sixteen on the 9th February, so he lived a long and happy life (I hope he was happy – he seemed happy and we did everything to make sure he was). But saying goodbye to him was agonising and there’s been a massive hole in my life ever since. I miss him desperately. I want to write more about him – it just feels like the right thing to do – but I’m just not ready yet.

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  • #30dayfeb – My tutor, mentor, friend, and super inspiring person, Sophie Daniels, is running a challenge throughout February (1st February – 1st March) under her artist project name, Liberty’s Mother (the name comes from the name of her daughter, Liberty, who tragically died the day before she was born), to raise awareness about baby loss and money for the baby loss charity, Tommy’s. The challenge is all about doing something positive for your wellbeing everyday for 30 days. I know a lot of people are going to the gym everyday, doing yoga, and so on but given my chronic fatigue and chronic pain, I can’t do those things so I’ve decided to focus on relaxing my brain: mindfulness essentially but in a slightly less traditional fashion. I’m going to try and make a piece of origami every day because I can’t think or stress about anything when I’m doing it because I have to concentrate so hard. And I could do with some of that. You can sponsor me to do this, to try and do this everyday. Here are some of my attempts so far.

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So that was January. Yeah, 2020 – the new decade – began on a very stressful and sad note. I’m thankful for the moments of light.

The First Semester of my Masters Degree

Now that I’ve finished my assessments, I thought it might be an interesting idea to sit down and write about my experience of the first semester of my Masters Degree. Because I’m doing it part time (mainly to protect my mental health), I’m only doing one module rather than two, which is what the full-timers do. The module I did was called ‘Creative Process’ and it was four hours of uni time, a two hour seminar where we talked about different areas of the creative process and then a two hour workshop where we played the songs we’d written based on the ideas and concepts we’d talked about the week before. It was a really interesting module and I wish my mental health had been better so that I could’ve focussed and enjoyed it more.

I feel really lucky when it came to my group and my tutor.

My group was only about nine people (when the other groups were much larger as far as I know) and they were all absolutely lovely. We were all really different, both musically and life experience wise (but I guess that’s what happens when you get to Masters level), which was really interesting when it came to writing and socialising and… just everything. It was a completely new experience and one that I’m really grateful for. Up until now, I’ve mostly been surrounded by people my own age with similar experiences.

Everyone was so, so good, all in their own way. They all had their own style (some had particularly beautiful musical signatures, some wrote from interesting perspectives with thoughtful lyrics, and so on) and it was so interesting and exciting to see how they developed over the semester. We were and I know will continue to be so supportive of each other’s music and development as songwriters. It always felt safe to bring in something I felt unsure or insecure about and the feedback was always constructive and because the person wanted you to get better; I never once felt like someone was being mean or looking down on me. It was such a supportive atmosphere and I’m so grateful because I think that was a huge part of what helped me to grow so much as a writer.

I made two really good friends in particular, both of whom I’m still in the same group with to my absolute delight. They’re truly beautiful souls. One of them, Luce Barka, wrote this amazing song during the semester and has said she’s happy for me to share it with you guys. I really, really recommend it…

I also had a fantastic tutor, Isobel. She’s a really cool, independent singersongwriter, which I think made her an especially good teacher because she’s very immersed in the industry we’re all trying to get into, in her own, distinctive way. She’s also dealt with serious health problems (which she has talked about publicly so I’m not breaking her confidence or anything) so I felt like she was a really good tutor, especially for me. She understood, or had a kind of understanding, of what I deal with. She was a really, really great tutor, in discussions and when giving and guiding feedback. But for me personally – and this is my blog after all – she was incredible when it came to helping me manage the course against all of my issues. When my anxiety was overwhelming, she helped me adjust the tasks to make them easier while still allowing me to do the task and learn the skills. I am massively appreciative of how accommodating and generous and kind she was, even before  she received the Student Support Agreement (the document with all my information and recommendations).

Anyway, she was amazing. I learned so much, obviously from the course but also from the way she delivered it and the feedback she gave me. I feel like I’ve grown so much as a writer and I feel like she’s a really big part of that. Plus, I’ve never had a teacher who was so understanding, who helped without hesitation, with just my word to guide her. I can’t properly express how much I appreciate that. It’s never happened to me before and it felt so wonderful to be treated as if it was something you just do, rather than being made to feel like a burden or an obstacle to be manoeuvred. So, as much as I learned (and I learned a lot), that is what I’m most grateful for and one of the things that I will always remember about this semester.

The first few weeks were really, really tough. After my massive meltdown in Victoria station, I was having meltdowns every day (as I wrote about here), which was having a big impact on my mental and emotional health, also leaving me physically exhausted. That significant meltdown was triggered by an email from the Disability Coordinator (who was also an Autism Specialist), suggesting a very last minute change of plan for our scheduled meeting which still leaves me bewildered. As an autistic person, sudden changes of plan are known to be highly problematic. That, plus my existing anxiety, caused a massive meltdown that took a very long time to recover from. And it left me feeling less than confident in her ability to support me even though we had had a positive first meeting and I had left feeling cautiously optimistic that this time it might be different. It then didn’t improve as actions promised at that meeting didn’t get done, leading to more meltdowns. So that was a real complication and painful part of the semester.

Having said all of that, I loved the classes. We learned about songcraft, collaborating, imposter syndrome, professional practice, perfectionism, and so much more. It was fascinating and fun and the briefs, while often stressful (with only a week to write the song), were interesting and challenging. I wrote some songs that I’m really proud of and I feel like my songwriting grew a lot because the briefs were challenging.

We watched this video in one of the classes and I thought it was really good so I thought I’d share it:

I loved it – loved getting better at songwriting – even the bits that pushed me and made me feel uncomfortable.

However, out of class was another matter. We were expected to do research that would later become the foundations of our assessment essay and presentation. Except whenever I asked, they wouldn’t tell me what the assessment entailed and just said it was ‘self directed learning’ so I didn’t know what I was actually researching, which caused me terrible anxiety. I created a reading list of books, articles, and interviews about creativity and songwriting but as hard as I tried to do the work, my OCD – my need to write everything down – battled against it. And usually won. So if I wasn’t writing, I was reading. I had no downtime. I was constantly anxious, like, end-of-the-world-anxious. And I felt like I was failing.

They explained the essay and presentation in the last couple of weeks but I still didn’t really understand. The language was complicated and vague and while I understood the general idea, the grading criteria was pretty ambiguous. I didn’t know what I had to do specifically to get good grades. I need clarity. It was incredibly stressful.

It took a couple of last minute meetings with my module leader to really understand what was expected of me but I was now facing a myriad of problems. The research I had been doing had little relevance to the subject I was writing about so I’d have to redo all of that, as well as actually write the essay and prepare the presentation. Plus we were in the final two weeks of the semester and the university would soon be closed for the Christmas holidays so I would have no way of contacting anyone for any support. I was wound so tight I felt like my spine might snap. I felt like I couldn’t breathe. I’m really grateful for those meetings but I just wish the assessment had been clearer earlier in the module so the research I was doing could’ve been more focussed. With all the problems associated with Autism, like chronic fatigue and chronic pain, time is something I have to be incredibly thoughtful about.

I worked every day of the entire holiday (apart from Christmas Day, which I spent with my family – something I don’t often get to do) but the assessments were always in my head so I felt like I couldn’t take a break or have any time to rest and recharge. I still didn’t feel sure that I was doing it right but still, I worked hard on it and gave it everything I had. I finished both the essay and the presentation with time to spare, allowing myself time to redraft and prepare, giving myself the best chance of doing well. I submitted the essay, despite big technical problems with the system, and I did my presentation to the best of my ability, despite finding presentations incredibly difficult. Now I just have to wait for the marks.

Now, having run through the whole semester (and having reflected a lot on the difficulties), I just wanted to share a couple of specific, positive experiences:

  • For one of the early seminars, we had a guest tutor, who works primarily as an expert in Personal Transformation, come and talk to us. Because we were such a small group, he was able to really talk to each of us about our lives and our creative struggles. Considering how little we knew each other at the time, it was amazing how open everyone was and I think it’s part of the reason we became so close and supportive as a group. It was a real bonding experience to hear all of these personal stories and I personally felt really honoured to be part of it, to have been trusted with those stories.
  • One week I brought in a song that I was really proud of. It had a repeated line in it – “it’ll get easier” – and everyone picked it up really quickly, singing along and harmonising. It was beautiful and emotional and it was one of the most special moments of the semester for me.
  • During my research, I found a quote by Paul Gardner that I’m endlessly inspired and intrigued and excited by: “A painting is never finished – it simply stops in interesting places.” There are so many things that could mean. What do you think it means? Or what does it mean to you about a particular thing in your life?

Overall, it was a very mixed bag. The good moments were great and made me feel amazing. I got a lot out of it. But I spent a lot – A LOT – of the semester in crippling anxiety and I had a lot of meltdowns. It was fucking hard. And the marks haven’t even come back yet. I’m terrified that I’ve done horribly. But I’m trying not to think about it. I’m just trying to get through this new semester. Which may be even more stressful than the last.