A Day In My Life (University With Autism Spectrum Disorder)

As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.


THE NIGHT BEFORE

Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me –  so that I can get as much out of that session as possible.

So it was one of those days where I barely had time to think.

On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.

I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.

So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.

I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.


THE DAY ITSELF

I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).

My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.

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I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.

My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).

I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.

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That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.

I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.

I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.

During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.

I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.

It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we  were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.


THE NEXT MORNING

I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.

Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.


So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.

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.