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
Posted on November 14, 2020
While I was going to write a series of posts about the events of this week, the way all of those events played out made that much more difficult than I’d anticipated so, after a lot of thought, I decided to put them all together in one post because I still really wanted to write about all of them. It was an intense week, with some really big events and a lot of anxiety.
The week in this post started on Monday 2nd November and ended on Sunday 8th November 2020, the autumn semester’s reading week. It involved an Autism webinar, the US election, Bonfire night, as well as the beginning of England’s second national lockdown.
My Mum was visiting her Mum, masked, social distanced, and outside where possible before we all go into lockdown again. So I was all on my lonesome, which is pretty unusual these days. Apart from the cats. Once Queen Lucy realised I was awake, she was climbing all over me, very clearly telling me that it was time for breakfast. So I dragged myself out of bed and went downstairs to feed the pride.
I spent the morning doing various admin tasks like replying to emails and finishing a couple of blog posts before having a shower, getting back to my computer in time to get a ticket to Tim Minchin’s upcoming livestream for his new album, Apart Together. It’s scheduled for the end of November so that will be something really fun to look forward to during lockdown. In the description of the event, they describe him as an ‘inimitable poly-talent,’ which is absolutely true and I just can’t help thinking what it would be like to be described that way. What an awesome compliment.
That done, I settled into my little home studio space and got to work. There were a handful of songs that I had been neglecting and so I finally forced myself to stop procrastinating and prioritising other things and spent several hours recording vocals for them. It’s stupid: I don’t know why I put off recording vocals so much. I guess they make me feel anxious and insecure, like I’ll listen to myself and suddenly realise what a terrible singer I am (which, yes, I recognise is ridiculous because while I know I’m not the greatest singer out there, I know I’m not terrible). But anyway, I always put it off and then when I finally do it, I remember how much I enjoy it. As I said… ridiculous, and yet we’ve all had that experience in one way or another.
It was a challenge because it was really windy outside, so windy that the microphone was picking it up and I had to delete multiple takes because the wind noise was so obtrusive. And then, Lucy decided that she was being left out of something important. I managed to convince her to lie on my bed (instead of climbing all over me) but even her stretching and clawing the duvet was making it into the recordings. I ended up barricading myself in my bedroom for the rest of the tracks. Fortunately, she (and the others) didn’t start yowling until just as I was finishing up so I was able get everything done without the feline interruptions. I think they’ve developed a form of separation anxiety after having me at their complete disposal (by which I mean I’m available to be sat on at almost all times) since late February and the closed door was just unacceptable.
I had a short time to rest and order my thoughts (change hats, if you will) before signing into an online meeting about an upcoming conference that I’m a panelist for. Just typing that out is wild to me; this is something I’ve always wanted to do. I mean, ideally it would’ve been on a literal panel, talking directly to people, rather than through a screen, but I’m not complaining. I’m nervous but excited. The other panelists were all really nice and we had a good discussion and planning session.
I was pretty knackered after all of that so I lay down on the sofa and attempted to do some blog post writing. I didn’t get very far – I think I was just too tired – but I made progress on a couple of posts so that was something.
I had a place on a webinar in the evening about Autism in young people but as hard as I tried, I couldn’t get into it and the anxiety and frustration and confusion – likely combined with my anxiety about the pandemic, the US election, and the impending lockdown – resulted in a lot of distress. I wouldn’t call it a panic attack or a meltdown but it was a serious overload of difficult and upsetting feelings. I talked to Mum about it afterwards and she suggested emailing them to see if they had a recording I could watch since I’d paid for a ticket and then not been able to attend. So that was a job for the next morning; I was too upset and all over the place to try and write a coherent email.
Despite not attending the webinar, I ended up staying up far too late, bouncing between writing for my blog and in my diary. Lucy curled up with me and, completely exhausted, I was asleep in a matter of minutes.
I woke up with a headache that even my prescription painkillers couldn’t kick. I’d had a busy day planned out, with the US election the next day (I knew it would dramatically affect my emotions and therefore my ability to work so I’d planned to get as much done beforehand as possible). I tried to get up and get things done but I just felt so unwell that I ended up shifting my week around to give myself a lighter day. I just couldn’t do the more demanding tasks I’d planned to do.
I didn’t manage to get much done that morning. My head was pounding and I was tired and I just couldn’t concentrate enough to get as much done as I would’ve liked to. I did start the essay for this module for the Masters, working out the different sections and the elements I could talk the most about. I also managed a little bit of blog writing; I swear, just as I think I have a decent buffer of posts, they’re gone and I’m panic writing to make sure that I have something to post (not that I’m panic writing this post – I just thought I had more posts lined up than I do).
Early afternoon, I joined the the video call set up by a group from my Masters classes last year (they were the full timers who’d done the whole course in one year while, as a part timer, I’m taking two years to do all of the modules) to watch their online graduation ceremony. As far as I know, everyone was watching the ceremony but not everyone was in the video call, including one of my best friends but we were chatting via WhatsApp. When the ceremony ended, the university had organised video calls for each course and so the majority of the full timers logged on, plus a few of the part timers as well as our course leader to celebrate together. Some of the other tutors on our course also dropped in briefly to say hi. It was so nice to see them all. It feels like so long since I’ve seen most of them and I do miss them; I feel like we had a really lovely dynamic. We chatted and caught up and had a drink together and the whole thing ended up going on for about three hours. I was pretty social-ed out afterwards but it had been so nice to see everyone and celebrate their achievements.
Not long after we all hung up, my Mum took Lucy to the vet as I think the cysts she developed a few months ago have returned. They were back within the hour and the vet had confirmed my theory. The recurrence has also confirmed where they’re coming from and so she’s booked in for surgery on the 12th to remove the cysts and hopefully fix the problem. Apparently it’s not much more complicated than the previous surgery and she’s a very healthy cat so there’s no reason to worry unduly. He’s a great vet: we haven’t known him long at all and yet he already takes my high levels of anxiety into account when giving explanations and laying out the options. I really, really appreciate that.
Lucy has never seemed distressed by going to the vet but she’s always very pleased to be home. She often comes and cuddles up with me if possible though. I don’t know if she feels in need of affection, if she was trying to get rid of the unfamiliar smell of the vet, or whatever but it was very cute.
We weren’t confident about the support bubble rules going into the second lockdown so one of my other parents (who we’re in a support bubble with) came over for the evening and we hung out, had dinner, and watched some TV together. It was really nice and I think we all needed it.
Throughout the afternoon and evening, I’d been working on a personal essay to go out as part of the campaign for my recent single, ‘Honest,’ and I finished it at around eleven. I could barely keep my eyes open by that point but I thought it was at the very least decent, as did my Mum when she proofed it for me – I’ve had much more positive feedback since, which has been good for my confidence as I was feeling quite insecure about it. But anyway, given how tired I was, I decided to leave it as it was and have another look at it in the morning before sending it off.
I’d been doing my best not to think about the US election all day, avoiding social media as much as possible, but when I went to bed, all the anxiety rushed in. I was so terrified of Trump getting in again; I was almost overwhelmed by the dread of waking up to that as the result. As hard as I tried, I couldn’t relax enough to sleep and ended up taking both my anti-anxiety medication and a sleeping pill.
While I think we all felt that it was unlikely we’d wake up to an official result, it was nonetheless tough to wake up and see that it still wasn’t over. But worse, was that it could still go either way when I checked the news first thing. I saw this meme making the rounds on social media and it felt very relevant; I’m pretty sure that this was how my face looked.
It ended up being a long, anxious day of refreshing the various news sites, waiting for updates and not getting much done. I did manage to edit the personal essay and send it off but other than that, I just bounced between writing blog posts and working on my Masters essay without making much progress in either. I was just so anxious; I felt like I couldn’t breathe. I may not be American nor do I live in the US but I have friends and family who do and the political decisions made there have the potential to ripple so far out, affecting so many countries and so many people. So to say I was stressing would be a massive understatement.
Slowly though, the numbers did start to shift in favour of Biden more and more. It wasn’t a done deal by any means but it was going in the right direction. I was refreshing my phone relentlessly; I could barely concentrate for five minutes without having to check to see if there was an update.
In the evening, Mum and I had dinner and then went for one last swim before lockdown closed all the gyms. We tried to make it as safe as possible, going close to their closing time when it’s always quiet. Plus they keep all the doors open to help with the ventilation. I still almost fell apart in the changing room because the experience was so stressful – whether it would’ve been a meltdown or an anxiety attack, I don’t know. But the staff helped us out and the few people swimming were very obliging about making it possible to put as much distance between all of us as possible.
We had a really good swim, including some of the new hydrotherapy exercises, and by the time we got home, Biden only needed six electoral votes to win and Trump needed fifty six. I was so excited; I actually felt like I might throw up from the anticipation. Again, I found it very difficult to sleep.
And so begins Lockdown 2.0…
I slept long and deep and when I did finally wake up, I didn’t get up for quite a while, going through the election coverage. The numbers hadn’t moved and it was making me edgy.
I got up, had breakfast and a shower, and got down to working on my essay. I’d only been working on it for about half an hour though when a friend called and we ended up talking for over an hour. It might not have been the way I’d planned my morning but it was really good to have that chat; I felt better for it.
When we hung up, I managed to do a bit more work on my essay before getting myself made up to do some filming. It’s getting dark so early now that I couldn’t wait any longer or I’d lose the light. I set up my little corner (I’d love to have a more permanent space at some point) and filmed some bits and pieces for the ‘Honest’ single campaign. It was a bit of a struggle – cold and uncomfortable and the cats wouldn’t leave me alone – but eventually I got them all done, which was an important job to have ticked off my list.
That done, I went back to my uni work. I spent most of the afternoon working on one of my song assignments: a reimagination of one of my own songs. It’s weirdly hard: you spend so much time trying to make a song perfect and then you have to turn around and create something entirely new from it, bring out a different emotion or try it out in a different genre. I took this really big, fiesty pop song that had this whole ‘I don’t need you’ vibe and turned it into this quiet piano song that was based on the moment of that realisation when it’s still fragile and tentative. I worked on changing the chords and then recorded them but they were still just one chord per bar; I planned to take it to a friend who is a much better piano player than me to help me expand on it, breaking up the chords and changing it a little for each section to keep it engaging since it was just going to be piano and vocal.
I was just finishing and stretching out on the sofa to relax when the fireworks started going off. I hate Bonfire Night. If you’ve read this post, you’ll know why but the short version is that, not only do fireworks massively trigger the noise sensitivity associated with my ASD, I had a firework thrown at me when I was at the cinema as a teenager. So fireworks make me very anxious and the more there are, the more anxious I get.
I was doing okay: I’d done some blog writing, Mum and I had had dinner in front of Legally Blonde (a friend of mine has been trying to get me to watch it for ages, ever since I’d said that I’d never seen it), but then excruciatingly loud fireworks (that we later found out were being let off a few gardens down from ours) started going off. It could’ve been machine gun fire. The sound triggered one of the worst meltdowns I’ve ever had: I was shaking, hyperventilating, sobbing, screaming (apparently I was screaming ‘stop’ over and over but I never really remember meltdowns afterwards), pulling out my hair to the extent that I was drawing blood… I have no idea how long it went on for but it felt like it could’ve been an hour. Eventually it stopped but meltdowns – my meltdowns at least (I don’t want to speak for anyone else’s experience) – often take a while to settle. I’d barely started to relax when a few minutes later, it all stared again and re-triggered the meltdown. Even after they did finally stop, it was still a long time before I was responsive again, able to interact with my surroundings, able to talk again. It was horrific. It was absolutely horrific.
I have no idea how much time that ate up, just that I was absolutely drained afterwards and barely able to sit up on the sofa. We finished the movie (I liked it for the most part but there’s a really problematic scene where one of the lawyers tricks a gay man into outing himself in public, which is just not okay – I get that it was almost twenty years ago but that doesn’t make it comfortable to watch) and headed for bed. The one thing I will say about it being Bonfire Night was that one of my cats, Sooty (pictured below), stayed with me all evening, snuggled up nice and close. I don’t know if she understood my distress or whether she, herself, needed some comfort but it was very nice to have her with me all evening. Nothing really helps with the meltdowns but it did help before when it was the odd bang and after when I was a collapsed on the sofa. She was an excellent little companion.
Despite being so exhausted by the meltdown, I couldn’t sleep, no matter what I did. Maybe it was adrenaline, maybe it was fight or flight… I don’t know. But I couldn’t fully relax for hours, even with the help of a sleeping pill. I think I eventually went to sleep at some point between two thirty and three.
I struggled up the next morning and after a while, decided to post about the experience. I’d seen #banthefireworks and similar hashtags trending on Twitter the night before, mainly to do with how traumatising they are for pets and for wildlife. It was, however, the first time I’d seen people with sensory issues and Autism mentioned as well though, which felt like quite a big deal. I’d been too out of it the night before to write anything at all but with my head a little clearer, I thought that maybe it could be a good idea and maybe raise some awareness about what the experience of Bonfire Night (and fireworks in general) is like as an autistic person. So I posted this on Twitter and on my Instagram stories:
I actually got a really lovely response with a handful of likes and kind, supportive comments.
I got up and got myself ready for the day and settled down to do some blog post writing. I was feeling very fragile after the meltdown(s) the night before so I put on one of the movies that I discovered during the first lockdown and ended up watching a lot because it just feels good. It’s called ‘Isn’t It Romantic’ with Rebel Wilson. I’m generally not a rom-com fan and I hadn’t seen Rebel Wilson in a role that didn’t make me cringe so I was initially wary when my friend recommended it but I ended up loving it. It’s just the ultimate feel good movie. So I had that on in the background as I tried to write (my thoughts always feel kind of fuzzy and not quite connected after a meltdown, sometimes for a few hours and sometimes for days – it can get really upsetting if I spend too much time thinking about it; feeling like your brain doesn’t work just feels so horrible and scary).
Mid afternoon, I had a session with my therapist. I haven’t ‘seen’ her for a while so we had quite a bit of catching up to do. We talked in depth about the night before, as I usually need to after an experience like that. I feel pretty lucky that I had a therapy session within less than twenty four hours, even if it was still very raw. But better that than in a week or two. The other main thing we talked about was how I’m struggling more than usual with my OCD: with the new semester of uni and the promotion of ‘Honest,’ it’s been really hard to find the time and emotional energy to keep up with my diary (for those unfamiliar, my OCD manifests as a compulsive need to write everything down. The overwhelming anxiety and pressure to keep up and do well in my Masters and what is effectively my job seems to be the only thing that can overpower my compulsive writing but then the anxiety around that only builds and builds until I feel like I can’t breathe, like my mind is coming apart and I’m no longer able to form coherent thought processes. We spent a while talking about that and about starting to tackle it as an issue, something we haven’t done because the pandemic has had such an impact on my mental health. It was an exhausting session but it was good to see her and hopefully, in therapy at least, I’m moving out of the frozen state I’ve been in since the pandemic hit the UK. I’m reluctant to commit to that as a statement but I’m cautiously optimistic.
I was pretty much done after that; I didn’t have any energy left. I posted a video to remind people about the new single but that was pretty much all I could manage for the rest of the day.
Since I was too tired to do anything, I ended up watching a new film, Inheritance. The trailer had looked good and while it wasn’t the best film ever, I thought the acting – especially the scenes that involved just Lily Collins and Simon Pegg in a room – was really good and I enjoyed the twists and turns. It was very dark though so I can definitely see it appealing to some and really not to others.
While the fireworks weren’t anywhere near as bad as the night before, people were still setting them off throughout the evening, which really heightened my anxiety. I could barely eat; it felt like my throat was closing up and swallowing was actively uncomfortable.
I spent the evening bouncing between trying to write blog posts and trying to write my diary, not achieving much with either. Again, I think I was just too tired. But it was still a bit too early to go to bed and I wanted to try and do something, even if it wasn’t much.
I FaceTimed with one of my parents before going to bed, which was really nice and then, during the call, I got an email saying that I’d got a ticket to Halsey’s upcoming livestream for the launch of her new poetry book, I Would Leave Me If I Could, which was really, really excited. And when I went to bed around eleven, Biden was very close to winning. So that was a good mental state to be going to bed with.
I struggled up at nine thirty and got straight to work, recording vocals for the reimagination of my song before my session with Richard. That went pretty quickly and smoothly because I was fairly solid in the new melody. I think it’s pretty good, although I was a bit concerned that the rhythm of the melody wasn’t that different from the original. I didn’t have the time to rework it so I thought I’d take that to class and ask for advice, both in terms of whether they thought it was a problem and how I should go about changing it if it was.
That done, I had a shower and breakfast, published my blog post about going back to the gym (pre this new lockdown), and then logged into Zoom for my session with Richard. We spent the next three hours working on the reimagination of my song and of the cover song. I found it quite frustrating since it was mainly arrangement and production based, so all I could do was offer direction and suggestions but Richard had to do all of the physical work, considering the Logic project was on his screen. This is one of the things I find hardest about collaboration via programs like Zoom: you can’t just take over from one another, swap chairs or instruments, or even point to things on the screen. Sometimes I end up finding it hard to engage and sometimes I just end up wanting to scream because I feel so limited. Most of the time it’s fine and I’ll gratefully accept the fact that we can work long distance at all but every now and then, the frustration just gets too much.
After hanging up, I put Friends on for background noise and spent a few hours working on upcoming blog posts.
I wasn’t refreshing the news as obsessively anymore so I didn’t discover it for myself. I got a text from Richard at 4:28pm with a screenshot of the BBC News announcement. I actually shrieked and shouted to Mum to tell her. I was positively giddy with relief: I laughed hysterically and then I just started crying because I was just so overwhelmed with so many emotions. It was like I could breathe again. And considering that’s how I felt when it isn’t my country or government, I can only imagine how everyone in America – those who had worked so hard to get Trump out and Biden in – were feeling.
The majority of people that I was seeing on social media were hysterical with joy and it being such a historic moment, I felt that I really wanted to add my own to mark the occasion…
We were just finishing dinner when the fireworks started going off. They weren’t bad enough to trigger a meltdown but they did make me anxious, cause me to flinch and lose my train of thought. I was going to be very pleased when those few nights of fireworks were over.
We had a quiet evening of TV (me and Mum are currently rewatching Hustle – it’s easy to watch but still such a good show) and I tried to do some gentle work on my Masters essay but I ended up in a state about all the musical theory language that I was supposed to be using but didn’t understand, being a self taught musician rather than having had lots of lessons or doing grades. So that was very stressful and I got very upset so I emailed my tutors to ask for some guidance.
I was still buzzing about the election news but it had been somewhat dampened (temporarily) by my uni anxiety so I went to bed just feeling like a complete mess. I was exhausted and overwhelmed and anxious and it was all just too much. By that point, I needed the emotional fresh start a new day would give me.
It wasn’t easy but I managed to wake up around eight thirty. I got distracted from getting up when I checked my social media though, looking through all of the posts about Biden getting in. There were a few negative posts but on the whole, my feed was mostly filled with positive ones, which was a nice way to start the day. Obviously our social media isn’t an objective view of any subject so I wasn’t going to base my knowledge of the election outcome on the reactions I was seeing but seeing so much positivity and joy on my timeline was a real lift in a very difficult week.
Eventually I tore myself away, had a shower and breakfast, and got down to work. I spent the morning working on blog posts and doing some Christmas present planning and shopping. And then I dedicated the afternoon to preparing for the conference. It’s a conference about University and the Covid-19 pandemic and I’m on a panel discussing autistic students and coping with change. So I wrote down all my thoughts, organised and input them into the powerpoint we would be displaying. It took a couple of hours but I was pleased with the work I’d done. Now I just have to pull together my notes for when it’s my turn to speak but I didn’t want to do that until we’d all met again and signed off on the powerpoint as a group.
I had some chill time before one of my other parents arrived for our weekly evening together (she’s in our bubble and it seems that bubbles – those that bring a household and a single person together anyway – are still permitted during this lockdown). We’d decided, given that we were already in a bubble and none of us do anything out but the essentials, that we felt safe to continuing seeing each other.
We had a really good evening. She’s a music teacher (or at least that’s one of her hats) and has been for decades so she was able to help me out with my essay: we went through the harmonic, melodic, and rhythmic elements of every section of the song and it was kind of hilarious how consistent I’d been without being aware of it: almost every element built on the idea of tension and release, except the release never comes. Non-diatonic chords, uncommon intervals, irregular time signatures, syncopation for days… The song had been an experiment in the weird and it was certainly that.
We had dinner with a movie (we missed the new episode of His Dark Materials because I got the time wrong – me and Mum made a note to watch it the next day) and while my parents were content to relax with the rest of the movie, I went back to blog writing. My brain struggles to sit still, to do one thing without getting distracted or bored. So I kept writing, with Sooty curled up between my knees. It seems to be her new favourite place.
Once it was just me and Mum again, we took our time winding down and then headed for bed. I checked my phone one last time and saw that, as promised if Biden won the election, Kalie Shorr had released a worktape of one of her unreleased songs, ‘Strawberry Blonde.’ It’s such a great song. Her lyric writing especially just blows my mind:
“…Sometimes I still get wasted
To stop thinking ‘bout the time I wasted
I started taking long walks again
And I started talking to God again
You’d hardly recognise me with my rose-coloured glasses gone
You might find it surprising I stopped taking shit from anyone
I got a new tattoo so you don’t know what I look like when my clothes are off
And I went strawberry blonde…”
I learn so much from her songs and I’d love to have the confidence she has in her writing style, in herself as an artist and as a person it seems. She is one of the people I want to write with most; I feel like it would just be so much fun and I’d learn so much. Plus I think we could write one badass song. She’s such an inspiration to me and has been ever since I met her and started following her career in 2016. I don’t know if she knows what an impact – what a positive impact – she’s had on my life.
My brain was going off like fireworks (ironic, I know, but it’s the only metaphor I’ve found that fits) after hearing that song, lyrics bursting into life behind my eyes, which of course I had to write down so as not to forget them. My brain is often at its most active and creative at night. So it took me a long time to get to sleep.
So it was a hell of a week. There was good, bad, really good, and really bad. I can’t say whether it was the week I expected or not because I had no idea what the week was going to look like, mostly due to the US election. Most of all it was exhausting. The new week felt daunting, going in so depleted, but it’s not the first time and it won’t be the last.
I hope this was interesting; I hope you enjoyed it. And I’ll see you in the next post.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, emotions, event, favourites, holidays, meltdowns, mental health, music, ocd, therapy, university, video, writing Tagged: a week in my life, alt pop, anti anxiety medication, anxiety, asd, autism, autism spectrum disorder, autism webinar, autistic, autistic adult, autistic blogger, autistic meltdown, autistic meltdowns, autistic student, best friends, blogger, blogging, bonfire night, cat, cfs, christmas, chronic fatigue, chronic fatigue syndrome, collaboration, compulsive writing, conference, coronavirus, covid-19, cowriting session, diary writing, donald trump, essay, essay writing, exhaustion, family, family of cats, fatigue, film, fireworks, graduation, graduation 2020, graduation celebration, graduation ceremony, gym, halsey, honest, honest ep, honest single, i would leave me if i could, indie pop, inheritance, inspiration, isn't it romantic, joe biden, kalie shorr, kitten, legally blonde, livestream, lockdown, lockdown 2.0, lockdown 2020, ma student, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, meltdowns, meme, music theory, musical theory, noise sensitivity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, pandemic anxiety, panel, part time masters student, personal essay, piano, poetry, poetry book, president, president biden, production, recording, reimagination, reimagined, richard marc, singersongwriter, singing, social bubble, social bubbles, social media, songwriter, songwriting, songwriting assignment, songwriting challenge, songwriting inspiration, songwriting session, strawberry blonde, support bubble, support bubbles, swimming, swimming pool, therapy, tim minchin, university, us election, us election 2020, vet, webinar, week in my life, working, writing, writing session, zoom, zoom calls, zoom writing
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.