Posted on March 29, 2021
And World Autism Awareness Week is here again!
Over this week, I’ll be sharing a series of posts focussed on Autism and my experiences with it, as well as resources from various organisations that may be useful for those of you who are autistic or support someone who is autistic.
Here are some great organisations that provide support and/or information:
On this blog, I’ve written multiple posts about or including various aspects of my experience with Autism and so, to begin this week, I thought I’d collate them in one post so that they’re easily accessible…
I hope this post is an interesting and useful start to the week and I look forward to sharing the rest of the posts I have planned for this week in the coming days. I hope you’re all staying safe and looking out for each other!
Posted on December 31, 2020
What the fuck was this year? I don’t even know. To think I ended 2019 with the phrase: ‘2020, please be kind.‘ I really don’t know how to write about this year. Time has become a bit of a nebulous concept and after a lot of thought, the only way I could divide up this year was by separating it into three ‘chapters’: pre-pandemic, lockdown-into-summer, and semester three of my Masters. It’s a bit of a weird system but then, is there anything about this year that hasn’t been weird?
So, here we go. This is my review of 2020, a year I’m sure none of us will ever forget.
The beginning of the year, the two and a half-ish months before the pandemic became less about ‘wash your hands’ and more ‘we’re going into national lockdown’ (in the UK anyway), feel impossibly long ago and kind of frighteningly busy. Looking back through my photos, it’s so odd to think that that version of me – of all those people in the pictures – had no idea what was coming. And now we’re entirely different people. I mean, I know I’m a completely different person because of the last nine months. I’m only speaking for myself but I imagine that a lot of people can relate to that feeling. I look at photos of myself from January, February, March and I almost don’t recognise myself…
Anyway, on with the review.
I wrote up January at the time because it was such a busy, emotional month. I had a frantic Christmas break, preparing for my January assessments (due to a misunderstanding about the assessment, a lot of my research wasn’t helpful and so I had to redo it so I got almost no free time during that holiday). That was incredibly stressful, as was the presentation, and I was beyond exhausted afterwards. And between the second single of the Honest EP, ‘Clarity,’ coming out and the very distressing DSA assessment in the following week, I didn’t really get any rest between the first and second semesters. And to top it off, I was pretty upset about the grade I received and by the time I felt coherent enough to appeal it, the deadline had passed. But in hindsight, it was the first grade of the Masters with a very new approach to working and grading so it’s probably not that surprising, especially as an autistic student.
The new module I was studying, Musicology (“the scholarly analysis and research-based study of music”), was really interesting and for the most part, the lectures were really engaging, something that was definitely aided by how passionate my tutor was about the subject. I’ve known him since my BA and he’s so knowledgeable; he’s a really great teacher and he’s a big part of why I did so well in the module. Not that my tutor in the first module wasn’t great – she’s truly awesome and so inspiring and I learned so much from her – but I learned a lot about how the Masters worked in that first semester that I was able to put into practice for the second semester, making it easier on my mental health and helping me to work more effectively, which did result in a much better grade. I found the songwriting classes less inspiring but since I was challenging myself with FAWM (February Album Writing Month) for a big part of the module, that wasn’t too big an issue.
I got to spend some really good time with my friends, both in and out of uni. A couple of them came down from London to visit me, which was really nice. Others I spent time with at uni or around London. I also had lots of writing sessions with people, which was really, really fun. I love my uni friends so much – I love my non-uni friends as well, of course, but during the semester, I rarely get to see them because I’m so busy – and there are a solid handful of people I’ve met during my time at BA and MA that I know I’ll be friends with for a really long time. I feel like I learned a lot about friendship this year, as I mentioned in my grateful post, and I just feel so lucky to have met these people; they are so wonderful and I’ve found it really hard to be separated from them for so long. I’m so looking forward to seeing them again and being able to spend time with them in real life whenever that will be.
(I haven’t got photos with all of my friends from this year and I do like to use photos from the year I’m writing about but don’t worry, you’re most certainly not forgotten.)
As well as writing A LOT, I was releasing music and got to play several really, really fun shows but I want to keep the music stuff together so I’ll come back to those.
One sadness of that time was that my favourite place to eat in Brighton closed, first temporarily and then permanently. That was very sad and I know a lot of people were upset by it. They made amazing Belgian fries with loads of homemade sauces and drinks – that I LOVE – that I’ve only ever had when I’ve travelled to and around the Netherlands where I have family. And the staff were absolutely lovely and it was always such an enjoyable experience; I always took friends there when they visited Brighton. So that was a shock. With everything going on this year, I probably wouldn’t have been able to go (and I’m not sure it would’ve survived as an independent business) but I have missed it. It was a true Brighton gem for the time it existed.
I think it’s safe to say that the biggest part of January, the pre-pandemic part of the year, and possibly the whole year, was having to let go of our beloved Lucky, our nearly sixteen year old black Labrador who we’d first met at three days old. He was very old (most Labradors live to between ten and twelve) and had developed some very difficult health problems in the last year or so of his life. We got home one night and he didn’t get up. He didn’t lift his head. He didn’t wag his tail. He was just done. It was heartbreaking and one of the hardest decisions I’ve ever been a part of but the next morning we took him to the vet and they put him to sleep. It was awful and I still miss him everyday, even though I know it was the right thing to do. He couldn’t have been more loved, by us, by everyone he met. He was a bit of a legend. I still wish him back but, again, as I said in my Grateful post, I’m glad that he hasn’t had to live through the pandemic, the sensitive soul that he was; it would’ve been very stressful for him. And the idea that we might’ve had to have him put down during one of the lockdowns where we couldn’t be with him is unbearable, so I do take some comfort from that timing. Still, the house feels empty without him.
Life was fundamentally different after that but we kept going, day by day, and there were good moments. I got to see my course mates put on an awesome show at a local venue, Song Suffragettes announced that they were coming to the UK on tour (I’m pretty sure I dug into my savings to get a ticket for every show…), and my Mum and I celebrated Lucky’s sixteenth birthday, even though he was no longer with us. I’d been planning it and so we just decided to celebrate for ourselves. I think that, in the future, we will think of him or go on a specific walk or something to remember him, even if we don’t actually ‘celebrate’ his birthday. The date will just be an excuse to dedicate some time to thinking about him and all the years we had together.
As well as dedicating the month of February to FAWM, I also took on the #30dayfeb Challenge For Tommy’s, organised by my university tutor/friend/mentor/super inspiring person, Sophie Daniels, under her artist project name, Liberty’s Mother, to raise awareness about baby loss and money for baby loss focussed charities. The challenge involved doing something everyday for thirty days that was positive for your wellbeing; I saw a lot of people doing yoga, for example. I chose origami and made a different piece everyday. These were some of my favourites:
I was lucky enough to see several shows and concerts before everything closed down. That’s something I’ve really missed this year as they’re sort of THE thing that I spend my money on and go out to. I was going to see The Shires, Alanis Morissette, OneRepublic, The Phantom of the Opera, Hamilton, the Song Suffragettes UK Tour, Taylor Swift at Hyde Park, and Tin Pan South in Nashville – those last three cancellations in particular hit me the hardest. I’d been so looking forward to them so I was really, really upset when they were postponed and then eventually cancelled.
However, I did manage to see Halsey twice on The Manic World Tour, which was incredible. I love her, I love this album (it was one of my favourite albums of the year), and the show was just mind-blowing. It was awesome to see her get to play at The O2 Arena (her biggest headline show to date, I believe), especially on International Women’s Day. She’s an amazing performing but I also love how she speaks to the crowd; it feels like she’s speaking just to you. I wanted to run out of the arena ahead of all the crowds so that that illusion wouldn’t be broken. Both shows, but especially that show in London, felt very special.
I also got to see Sara Bareilles in Waitress The Musical several times. I’ve seen several actresses (all amazing) play Jenna but there was something really special about seeing Sara play her, as the person who’d written so many beautiful songs coming from her perspective as a character. It took a minute to stop seeing Sara as Sara and start seeing her as Jenna but once I’d gotten my head around that, I was just enthralled. She was fantastic and so special; I loved the show all the more for seeing her in the lead role. I was lucky enough to go a handful of times and of those, on several special occasions (sometimes on purpose and sometimes by accident): I saw Sara’s first show, I saw the one year anniversary of Waitress in London show, and I saw Sara’s final show, which also turned out to be Waitress’ final London show. So while I knew that show was special, I didn’t realise quite how special it was until much later. I tried my best to meet Sara (one day, I hope…) but for most of the shows, Sara was either out of the building before we could line up or we were hustled away pretty quickly. I did see her on the last night – she walked up and down the queue of people waiting and waved to everyone – but she didn’t stop to talk or take pictures or accept gifts because of the growing concern about COVID-19. That show was actually the last thing I did before we went into lockdown, not that I knew it at the time.
Everything changed very quickly. One day I was talking to my friend about plans we had later in the week and the next, she was on the plane home before the borders closed. I made the decision to start self isolating but before I would’ve had to go back to uni (or, having come to this decision, contact them about it), the classes were moved online.
The UK officially went into national lockdown on the 24th March. I’d already been self isolating for eleven days, as had my Mum, apart from necessary trips out (food shopping and business related stuff that had to be done in person). I had two weeks of online classes plus my assessment essay, which I was already working on. It’s strange: at the time, I wasn’t really aware of the outside world because I was a hundred percent focussed on my essay (and it was probably the most difficult, research heavy essay I’ve ever had to write). Maybe I was channeling all of my anxiety into that so that I didn’t have to engage with my paralysing anxiety about the pandemic. But then the essay was done and submitted and it all came flooding in.
Between the inevitable post semester and assessment period crash and the pandemic anxiety hitting me full force, I just went to pieces. I was either having meltdowns or staring blankly at old tv shows, too overwhelmed by fear to function. That went on for weeks and to be honest, it’s kind of a blur. I think I was in some sort of checked out, survival mode haze. I just could not cope. In hindsight (and in the few moments of coherent thought I had at the time) I was and am so grateful that I had that summer semester off. Many of my friends on the Masters were having to work on their final projects during one of the toughest periods of our lives (and created incredible work in spite of it) and I just could not have done it. My mental health was in tatters. Even now that I’m in a better, more stable place, I still feel deeply traumatised by the events of the last nine months: by the constant fear and paralysing anxiety, by the sheer overwhelming grief that so many people have experienced and are experiencing, by the confusion and frustration and outright horror at how the government – the people we depend on to lead us and take charge during extreme situations – have behaved. I mean, how do you cope with completely losing faith in your country’s leaders? Who are you supposed to turn to? Anyway. That could easily turn into a rant and that’s not what this post is about.
I’m not really sure when I started to come out of that because it was such a gradual process. But slowly, with LOTS of ups and downs, I started to feel more able to engage – if only with the people directly around me and the things that I enjoyed doing. Thank god for the cats (and Mum – I’ve talked about how grateful I am for her in my Grateful post – but we both agree that the cats were a lifesaver during the lockdown). They’ve been so good for my mental health this year. It’s so mindful to watch them; you can’t help but feel calmer, watching them play or snuggle and so on. Especially without Lucky, their cuteness and cuddles have been vital and the ridiculous playful moments have made me laugh even when it felt impossible. I’m so, so glad to have had them around during this time and they certainly seem to enjoy our constant presence at home; a day rarely goes by without one cat or another draping themselves over me. As I said, they’ve been a lifesaver. I don’t know how I would’ve made it through without them.
I had online therapy sessions but I struggled with them and often ended up cancelling at the last minute because they just felt too overwhelming. All I could think about was the pandemic and my fears around it; I didn’t want to dig into that even more and it felt impossible to talk about anything else. So my sessions were fairly sporadic throughout the lockdown and most of the year really. I think, in hindsight, therapy just felt too big, too overwhelming to be helpful while all of my emotions felt so incredibly heightened and raw. I was just focussing on getting from one day to the next. The cats were a big help; I started escaping into the worlds of new films and TV shows, like Absentia and Away; and I lived for the livestreams that a handful of people were doing in place of live shows. My favourites were Kalie Shorr’s, both because I love her and because she did so many of them. She did interviews with both interesting and entertaining questions, played covers, and played her own songs, released and unreleased. I’m so grateful to Kalie for doing all of that; they really helped me keep going, helped me get through the darkest of my pandemic-induced depression.
As I said, towards the end of the first UK lockdown, I became a bit more functional, although it was like balancing on a tightrope: one little knock and I was plunging back into overwhelming anxiety and depression. And it happened a lot. But I also had better, more productive moments. I managed to write a couple of songs (which is pretty monumental what with my mental health being so bad); I had writing and production sessions with Richard; I started gentle music theory lessons in preparation for the upcoming semester with one of my parents (she’s a music teacher); I spent a lot of time playing piano (I started experiencing awful nerve pain in my left hand – as well as in my back and leg – during the first lockdown so playing guitar was basically impossible); and I stayed up until almost six am to watch Ingrid Andress’ first livestream show and chat with her in a meet and greet session afterwards. So I was doing just about okay. Probably the biggest help was that all of my family (and most of my friends) were being exceedingly careful around going out: fortunately able to work at home, they only went out for essential trips, like food shopping and picking up medication, etc. I’m so grateful to them for that. So beyond grateful.
The lockdown began to loosen and more and more people were out, which I found terrifying. The silence outside had been weird at first but suddenly every little sound turned me into an anxious mess. Hearing people converse outside the shop we live above, for example, caused so many panic attacks (for fear that those people were spreading the virus). It was awful. For most of the summer, I kept the windows and curtains closed, enclosing myself in my own protective little bubble. It was the only way I could find to protect my mental health. With the gyms opening, I was desperate to swim again (as I’ve previously mentioned, it’s the only exercise I can do) – both for my physical and mental health – but I just didn’t feel safe at my usual pool. Their precautions just didn’t feel tight enough. On the plus side, after various COVID tests, I finally got to see my brother for the first time in months – longer than I think we’ve ever gone without seeing each other. We were still careful but it was so, so wonderful to see him.
Meanwhile, music stuff (mostly to do with the Honest EP) was still happening. Again, I want to keep most of this together (I’ll probably put it all in one paragraph towards the end) but I think this particular day is important beyond the musical context. I’d spent a lot of time worrying about the music video for ‘Back To Life,’ the next single due to be released at the time because my original idea wasn’t going to be possible during the pandemic, even with the lockdown restrictions having been loosened. Richard and I spent a long time discussing it and eventually came up with a plan…
The filming of the video was a big deal for me. I found it very difficult and very stressful being out for so long (even though our planning meant that, of the videos we shot for the EP, this one took the least time) and just being near people caused me a lot of anxiety, even down on the beach at the water’s edge. We were incredibly careful and I did manage to enjoy it to a certain extent but I’m grateful not to have to do another music video under such conditions. It took everything out of me; I spent the next three days on the sofa, barely able to move from the exhaustion. I have no idea how I managed to look so relaxed and even happy in the video. But, as I said, I’ll talk more about it when I talk about the whole EP process this year.
The rest of the summer was pretty gentle. I was trying really hard to improve and manage my mental health. It still wasn’t great but I was coping better than I had been earlier in the pandemic. So I spent a lot of time doing things that have proven to be good for my mental health: I listened to the Taylor Swift’s new album, folklore, on repeat; I played a lot of piano; I wrote songs when I could; I had video calls and online movie nights with my friends; I kept writing for the blog. I took part in research projects involving Autism Spectrum Disorder, Chronic Fatigue Syndrome, Depression, and Anxiety; helping out with these always gives me a mental and emotional boost because it feels like some good is coming out of my difficulties, even if they don’t improve my experience directly. I also watched the final season of Agents of Shield, my favourite TV show ever. That was a very emotional experience because the show, and the character of Daisy Johnson, have been a really important part of my life over the last few years and the emotional processing of stuff from my childhood.
And I continued to work on my music theory as the module was based on these concepts and I wanted to be as prepared as possible but I found the idea of going back to university very stressful. I really didn’t want to defer so I spent a lot of time thinking about what I wanted to do in terms of the new semester, what I felt safe doing. I’d originally thought that I’d much rather defer than do online or blended classes but now that the semester was almost upon me, I felt a lot less sure. After a lot of thought and discussion with my family and course mates, I decided to go back as an online student. It wasn’t ideal because of the lack of social interaction and how much harder it made cowriting sessions but I didn’t feel safe commuting to London to be in a building full of people from all over for just two hours a week. It just felt like too much anxiety for not enough reward. Online seemed like the most productive way forward. But even with that choice made, the process of going back to university, getting clear information, the correct timetable, etc, was incredibly stressful, causing meltdown after meltdown after meltdown. I really wasn’t at all sure whether I was going to be able manage university classes during a pandemic.
SEMESTER THREE OF MY MASTERS
The beginning of the semester was a bit rocky as the university tried to make blended classes (the online and onsite groups combined as one using Microsoft Teams) but in the end, it was simply easier and a more productive use of the time to split the onsite and online groups. My groups were great and everyone was really supportive and encouraging, tutors and students alike. Plus it was fun to work regularly with Richard again. The work was hard and the songwriting briefs difficult since musical language isn’t my strong point but after really positive meetings with both of my tutors, I never felt like I couldn’t ask for help or miss a brief if I needed to. As long as we was experimenting with our music – with the use of melody, harmony, arrangement, etc – and turned in the assessment work, everyone was pretty relaxed about what we were working on.
Despite a pretty heavy workload, I managed to get up to quite a lot during the semester. I celebrated my 26th birthday with the family I could and had a couple of socially distanced meet ups with friends; it was simple and quiet but I’m not really into big celebrations anyway. It would’ve been nice to see more of my family though.
I saw a lot of really awesome live-streamed shows, including Ingrid Andress at The Bluebird Cafe, various shows throughout the virtual Country Music Week and Nashville’s Tin Pan South Festival (I’m so grateful that we didn’t lose out on them entirely because of the pandemic), Halsey’s poetry book release day livestream, Maren Morris’ livestream concert, and Kalie Shorr’s charity StageIt show. But my personal highlights were Sugarland’s livestream show, Kalie’s ‘Unabridged For The First Time’ show (even though technical difficulties meant I missed bits of it), several of the Tin Pan South shows, and Tim Minchin’s ‘Apart Together’ livestream show.
I also attended several webinars and conferences about ASD and mental health, as well as actually speaking at one. That was a really special experience, being invited to speak on a panel and share my experience about being autistic. I felt like I was really able to use my experience to help other people and several of the attendees confirmed how useful my contributions had been. So that felt like a really significant moment.
Even though I was still on the course, many of my friends did the Masters in one year rather than two. They had a virtual graduation ceremony, which I attended in support. They all created such incredible work and under such difficult circumstances; I’m so proud of them and can’t wait to see what they go on to do. Some of them have already released really cool and interesting work and I know that many more are working on really cool projects. We had a celebratory drink via video call afterwards, which was good fun. I hadn’t seen a lot of them since March so I really enjoyed that.
I finally found somewhere to swim that actually felt safe, or as safe as possible: they had really strict safety measures. So I finally got to swim again and it was awesome. Each session gave me such a mental boost and it felt so good to exercise and really stretch my muscles again. I couldn’t get there as often as I would’ve liked (they spread the bookings out to keep the numbers low) but it was absolutely wonderful to be going again. It was erratic, especially with the second lockdown and most of the country now in Tier 4, but I enjoyed every second of it while I had it and I will again when the pool reopens.
The swimming was also good for the nerve pain in my back and leg. A few months earlier, I’d been diagnosed with hypermobility (very common with autistic individuals) and referred for hydrotherapy, which I’m unlikely to get for a while, but the swimming and basic exercises I’d been given did help. Or they seemed to anyway. I’ve also been referred to Rheumatology, Occupational Therapy, Pain Management, and had an MRI just to rule out anything unrelated to being hypermobile. It’s been a very slow process but I feel like we are starting to make progress, which feels really good.
The US Election was obviously a massive deal and not just in the US. I’m really glad that it fell during my reading week because there’s no way I would’ve been able to concentrate on classes. I’m honestly surprised by how much work I got done that week, given how much time I spent checking the news outlets for updates. In the end, it was Richard who texted me that the result was in. I shrieked, I laughed, and then I cried. I was so relieved.
Apart from swimming, the second lockdown didn’t change much for me. I was spending most of my time at my laptop, working on uni stuff. I had to turn in a portfolio of songs and an essay on the 4th January and, determined to get an actual break this year (unlike last year), I worked super hard: I wanted to have all of the work done before Christmas. So the end of the semester was intense and suddenly it was the last week, the session with Richard, and then the Christmas holidays. I worked every day from the end of the semester to Christmas Eve but I did manage to get all of the work done, which I was very proud of.
Christmas was weird. We obviously couldn’t see our larger family but then we couldn’t even see my brother because London went into Tier 4 (and then we went into Tier 4 on Boxing Day). I’d been prepared for a very different Christmas but it didn’t really emotionally hit me until a few days before and then I found it pretty difficult. We tried to embrace the difference: we decorated our tree with origami creations rather than our usual decorations; we structured our day differently… we kept it as different as we could so that the forced differences (like the lack of my brother) didn’t stick out so much. But we still managed to have a good day, I think. My brother and his partner had made a really great quiz, which we all had so much fun doing. That was definitely the high point for me. We were all together, laughing our heads off, and that felt really good.
I also just want to throw in here that there were some really great albums released in the fourth quarter of the year, which definitely boosted my spirits and inspired me a lot. There was Taylor Swift’s folklore: long pond studio sessions, which was both incredible and a fascinating look into the stories and emotions explored throughout the album; Kalie Shorr released the deluxe version of Open Book, Open Book: Unabridged, which included four new tracks, all of them as stunning as the original album tracks, if not even better – ugh, can you tell I love this album? And then, as if folklore wasn’t a big enough surprise, Taylor Swift released a second surprise album, evermore, which was another amazing album. The three of these, plus Manic by Halsey, were the musical highlights of my year. I love them all and I learned so much from them as a songwriter.
We’ve had a quiet few days up to new year, which is good. It’s been nice to have a bit more space to breathe, if that makes sense; there’s a bit less pressure in my life at the moment. Having said that, being in Tier 4 with a spike in COVID cases, has caused my anxiety to rise again.
And that’s the year…
So it’s time to talk about the music. With more content coming, I don’t want to go into too much detail; I kind of want to save the real round up for when everything is done, but I do want to do a quick review of my musical year because I think this is the first year where I’ve really felt like a professional singersongwriter. Of the five tracks on the Honest EP, all but one were released this year (the first single, ‘Bad Night,’ came out late last year). The second single, ‘Clarity,’ came out in early January with an accompanying music video; it did even better than ‘Bad Night’ and was even selected as BBC Sussex & BBC Surrey’s BBC Introducing Track of the Day. That was very cool!
I got to play a handful of gigs, all of which were so much fun. I headlined one of Indigo Eve’s nights, where people both waved their phone lights to a song and sang along to another. It was one of best gigs I’ve done and one of the best nights of the year. I played as part of my university’s songwriters’ circles, which is probably my favourite uni event; it was particularly special because it was the LGBTQ+ History Month special. That meant a lot to me and it was a great round. All of the performers were fantastic and the atmosphere was so positive. Looking back at my Instagram post about the show, I said, “I’m just on a joy train!” That was very accurate; it was a wonderful night. I was also invited to perform in the foyer of The Brighton Dome for their Access Open Day event; it was so much fun and I was giddy about the fact that I was performing there again when it was the first place I publicly performed. And before the lockdown started, I even managed a day in the studio, recording a fun project with some friends.
Everything slowed down when lockdown began but with a lot of help from Richard, we did eventually get the EP cycle moving again, starting with the release of ‘Clarity (Academic Remix)‘. A month or so later, the third single of the EP, ‘Sounds Like Hope,’ came out, followed by a music video beautifully animated by the lovely Lois de Silva. This one didn’t do as well as the previous two but it was a much slower, less radio friendly song so that wasn’t surprising. Having said that, it got some of the highest praise of the EP so although it didn’t reach as many people as the others, it seemed to really resonate with the people who did hear it.
The summer was a very exciting time, in terms of the EP. I got to ‘perform’ in the virtual Disability Pride Brighton Festival: they played the ‘Invisible‘ music video and it was streamed online and on TV! That was very cool: seeing myself on the television for the first time! Then, as I described earlier, Richard and I planned and filmed the music video for ‘Back To Life.’ I was very anxious about putting this one out, given its upbeat sound and title during the pandemic. But in the end, I decided that to leave it out would be to release an incomplete body of work, as the song is an important part of the EP. So I announced it with this message: “Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.” (x) I released the song in August, hoping that people would understand that the title was metaphorical, rather than literal. It didn’t do quite as well as the others had but given everything, I wasn’t surprised. It may have done better in a world without the pandemic but then we’ll never know, will we? Richard edited the video – with my feedback at various stages – and despite it not being what I’d originally imagined, I absolutely loved it. I’m really proud of it, especially given the circumstances and stress under which it was made.
And then, in October, I released the fifth and final single of the Honest EP, the title track, ‘Honest.’ It’s my favourite song on the EP and putting the last of our budget into promoting it, it did really, really well – the best of the EP. I’m so proud of it: the song means so much to me. It felt fitting to have the music video show some of the weird and wonderful ‘behind the scenes’ of this EP process…
As I said, the project isn’t over yet so I don’t want to write anything that sounds like too much of a conclusion but I’ve learned so much from it, from this year. I’ve learned a lot, dealt with enough stress that it’s probably taken years off my life, and never been so proud of anything I’ve done. I can’t wait to share the rest in 2021…
This blog post spiralled into something much bigger than I thought it would. But then, given that ‘normal life’ sort of evaporated around us and everything was constantly changing, maybe it’s not that surprising. I guess, there were a lot of things I felt I couldn’t leave to assumption so I included them just to be sure. Hopefully it’s made sense and got you thinking (or not thinking) about your experience of this year. It’s weird, isn’t it: we’ve all gone through this massive, world-encompassing event together and yet our years will look quite different. It reminds me of a quote I saw on social media (that I will have to paraphrase, unable as I am now to find it): “We’re all on the same sea but we’re all in different boats.” So, yes, we all experienced a global pandemic but our personal situations created a spectrum of experiences, with either end looking nothing alike. But I think we can all say that we’ll always remember this year. I know I will.
Although I spent a lot of the year feeling very negative, feeling depressed or anxious or frustrated or angry, I’m actually finishing the year feeling overwhelmed by gratitude. Yes, I’m anxious about being in Tier 4 and the rising COVID numbers – I think it would be ignorant not to be – but I’m just so grateful for all the positive moments and experiences that I’ve had this year. And, of course, the people in my life. I could not have gotten through this year without them.
“I don’t even know how to fully sum up this last year. If I thought 2019 was difficult, 2020 was on a whole new level of emotional chaos. I’ve been in survival mode for most of it, just trying to wade through waters that kept rising and rising, and every time I thought I’d found my balance, another strong wave appeared to knock me down. It’s easily been the hardest year of my life and one I know I won’t ever forget. But as painful and terrifying and exhausting as this year has been, there have been some amazing moments too: pre-pandemic gigs, releasing my EP, the contact with my friends and family, time with my cats, the awesome music, movies, and TV shows I’ve discovered this year, the chances to swim… So despite all the negative emotions I’ve experienced this year (and continue to experience), I’m overwhelmed with gratitude for the good in my life. // There’s a blog post with all my ramblings via the link in my bio 💜” (x)
Category: about me, animals, anxiety, autism, chronic fatigue, covid-19 pandemic, death, depression, diagnosis, emotions, event, favourites, holidays, identity, meltdowns, mental health, music, therapy, treatment, university, video, writing Tagged: 2020, 2020 in review, 30dayfeb, agents of shield, albums, anxiety, anxiety disorder, asd, assessment, assessments, autism, autism research, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, autistic student, baby loss, baby loss awareness, back to life, back to life music video, bad night, bbc introducing, bbc introducing south, befries, behind the scenes, black labrador, brighton, brighton dome, cat, cats, chloe bennet, christmas, christmas day, christmas holiday, christmas quiz, clarity, clarity academic remix, clarity music video, clarity remix, concert, conference, coronavirus, country music week, country music week 2020, covid-19, cowriting, daisy johnson, debut ep, depressed, depression, disability pride brighton, dsa assessment, evermore, family, family of cats, fawm, fawm 2020, february album writing month, film, films, folklore, folklore album, folklore: the long pond studio sessions, friends, grief, grieving, halsey, honest, honest ep, honest music video, honest single, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, i would leave me if i could, identity, ingrid andress, invisible, invisible music video, joe biden, kalie shorr, labrador, lectures, lgbtq+ history month, liberty's mother, live music, livestream, livestream concerts, livestream shows, lockdown, lockdown 2.0, lockdown 2020, lois de silva, loss, loss of a pet, lucky, manic, manic tour, manic tour dublin, manic tour london, manic world tour, maren morris, masters degree, masters degree in songwriting, masters degree year one, masters degree year two, mental health, mental illness, movie, movies, mri, music, music theory, music video, music video shoot, musical language, musicology, my cats, my dog, nerve pain, new years eve, occupational therapy referral, old dog, online classes, online learning, online therapy, online university, open book: unabridged, origami, pain management referral, pandemic, pandemic 2020, pandemic anxiety, part time masters student, part time student, performing, pet loss, piano, poetry, poetry book, reflecting, reflection, research study, research volunteer, rheumatology referral, richard marc music, richard sanderson, richard sanderson photography, sara bareilles, sensory overload, singer, singersongwriter, singersongwriter life, songwriter, songwriters circle, songwriting, songwriting assignment, sounds like hope, sounds like hope music video, sugarland, swimming, taylor swift, therapy, tim minchin, tin pan south, tin pan south 2020, trauma, traumatised, tv show, tv shows, universitiesuk, university, us election, us election 2020, waitress the musical, waitress the musical uk, year in review, zoom
Posted on December 6, 2020
A couple of weeks ago, I got to speak on a panel at a conference run by UniversitiesUK about how COVID-19 is affecting the mental health of students in higher education and it was a really cool experience. So, now that the whole process and experience is over, I thought I’d write up what happened and why it felt like such a special experience.
A few months ago now, someone from UniversitiesUK contacted me after reading this blog, specifically the post I wrote about my first week back at university and doing it in the middle of a pandemic. She asked me if I would be interested in being part of the conference and speak on a panel about how to support autistic students in coping with all the changes to their education experience, drawing from both my experience of doing a BA pre-pandemic and doing an MA during the pandemic. I said yes straight away; I was excited by the idea that my experiences as an autistic person could help others, both autistic people and those in universities trying their best to support autistic students. So often – at this point in my life anyway – it feels like my Autism hinders my life, so it always feels like a big deal when it’s the cause of something good or provides me with an opportunity to have a positive impact.
Before the conference, there were a handful of online meetings where, first and foremost, I got to meet the other panelists: Jonathan Vincent (Senior Lecturer at York St John University and Autism Researcher), Eilidh Cage (Lecturer at University of Stirling and Autism Researcher), and Marc Fabri (Senior Lecturer at Leeds Beckett University, Autism Researcher, and Project Lead for IMAGE). They were all really lovely and working with them was a really positive experience for me. It was a bit of a challenge to figure out how we were going to deliver all of the information we felt was important to share without overwhelming the attendees. Between our meetings we collaborated on a powerpoint presentation and then met up again (online obviously) to refine things and make sure we weren’t missing anything.
On the morning of the panel, we met early for a quick technical rehearsal, since we were using a different platform than the one we’d been using for our meetings. All went smoothly but just as we were signing off, we got an email from Marc, letting us know that unfortunately he wouldn’t be able to be there. So there was a bit of a last minute scramble to figure out how best to share his contribution with the attendees, despite it being his field of expertise and not ours. I’m grateful that that didn’t fall to me, having no experience in the area of employability of autistic graduates.
I’ve never really done anything like this (the closest experience is probably being a guest at a conference where I briefly shared a project relevant to the talk that I’d worked on) so I admit I was pretty nervous when all the conference attendees started logging into our breakout room. But despite my anxiety, the whole thing went well, even though we did go over our allotted time. And that was with only the three of us!
It was really interactive so there were polls and questions for the attendees to respond to, plus the chat where they could ask questions, although we did have a Q&A set up for the end of the presentation. We went through the panels, taking turns to speak about what Autism is, the disclosure numbers in Higher Education, research into into how autistic people often struggle with uncertainty and change…
And then it was my turn (although I had spoken a bit during previous slides). My first slide was about my experience of how COVID-19 has affected me as an autistic student and the challenges I’ve been faced with. I’d put together what I felt were the most significant examples:
All of our strategies that have been built over time no longer apply and there has been no time to develop new ones.
My second slide was about what I’ve found to be helpful or what I would find helpful during this time, considering all of the uncertainty and anxiety. They’re actually all ideas that would be helpful generally but since many autistic students are struggling even more than usual, these things are all the more important.
(This wasn’t all on the slide, by the way. The headers were on the slide and the rest were my notes for expanding on those headers in order to provide as much clarity and insight as I could.)
I shared this slide with Eilidh and she described what she’d found to be helpful with autistic students, going on to share some of the research she’d done into some of the causes of autistic students dropping out of higher education (obviously done pre-COVID but still very relevant – many of those issues, such as lack of understanding, still exist regardless of the pandemic). But it was really interesting to see how much our experiences of what has been helping overlapped.
The Q&A section was a bit scary, given that I didn’t know what the questions might be and so couldn’t prepare for them. I didn’t want to say something and then realise later that it was bad advice. But it actually went okay. I got a couple of questions but there was one that really stuck out to me. One of the attendees asked me about the situation of many autistic students wanting to remain online – in environments where they were comfortable, without the anxiety of potentially confusing social interactions, not have to deal with the exhaustion that days at university can cause, and so on – even once it’s safe to return to university as normal. She wanted to know, from my experience, whether that’s a good idea. I can certainly understand that. But in the long run, personally, I don’t think it’s a good approach. Every autistic student is different, of course, and will have different needs but I think that the experience of university is a really important one. It definitely was for me. So I think it comes down to supporting these students through the process of either joining or rejoining university. Depending on the student, this could involve visits when there are as few people around as possible, one-to-one meetings with lecturers or tutors as a first step to going to classes, doing certain classes (perhaps the smaller ones) in person and doing others online in a blended set up, encouraging them to do as much as they feel able to (and depending on the student, pushing just past the point of comfort if that feels possible) but allowing them to leave if they feel it’s too much, and just slowly building up to the full experience, as the specific student feels able to. It reminds me of the Māori word, ‘Takiwātanga,’ which translates into ‘his or her own time and space’ (devised by Keri Opai). So hopefully that was a helpful answer.
It was a really, really great experience. The feedback I’ve had has been really positive and I learned a lot too; the whole experience was really rewarding. I’m so grateful to UniversitiesUK for inviting me to be a part of it. I would love to do more events like this in the future. I felt like I was actually helping people, something that’s always been important to me regardless of my Autism. And on a more personal note, having spent a lot of time feeling helpless (as well as being a person who often needs a lot of help), it was so empowering to turn something that can be so debilitating into something positive and useful.
Again, I want to extend my thanks to UniversitiesUK, Jonathan, Eilidh, and Marc (although he couldn’t be there on the day) for making my first conference such a positive experience.
Category: anxiety, autism, covid-19 pandemic, mental health, research, tips, university Tagged: asd, autism, autism research, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, change, conference, disability support, eilidh cage, jonathan vincent, lockdown, lockdown 2.0, lockdown 2020, marc fabri, online classes, online learning, online university, pandemic, pandemic 2020, pandemic anxiety, panel, support, uncertainty, universitiesuk, university, university support
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.