Posted on December 12, 2020
Since my last week-in-my-life post didn’t include any time ‘at’ university, I thought I’d write another one this semester, one that included uni time and all that that entails.
After three really bad mental health days, I was a bit wary about the week ahead – starting it feeling so depleted. It ended up being a very mixed week, as they’ve all been recently. Maybe it’s an end of term thing: I start off strong but then I hit a wall somewhere in the middle and it doesn’t always take much. I’ve worked hard this semester so hopefully I’ll be able to finish all of my assessment stuff fairly quickly – it’s mostly just polishing now – and get some proper holiday time. Last year, I had to work every day of the Christmas break, only taking Christmas Day off. So some time off would be really nice.
The week in this post began on Monday 30th November and ended on Sunday 6th December 2020.
I slept badly so I took my time getting up and having a shower. I had some breakfast (and ALL of my pills – there’s so many at the moment, what with my normal medication, extra supplements, and some antibiotics) and then I got myself sorted for my session with Richard.
We spent about three hours on the call, working on the production for a new song I’d written, and then just chilling out together, chatting about our uni work, the various projects we’re working on, the tv shows we’re watching, and so on… We’re always texting and we have our Zoom sessions but we haven’t hung out together in months and I really miss that.
When we finally hung up, I was exhausted and what started as an episode of The Split while I recovered turned into finishing the second series. It was really, really good – even better than the first series. Nicola Walker and Stephen Mangan were particularly fantastic. I love Nicola Walker; she was incredible in Spooks, Scott & Bailey, River, and now in Unforgotten and The Split. Her performances throughout this second series have been breathtaking and the ending had me in floods of tears. She blows me away every time.
I spent what was left of the afternoon and early evening working on my assessment essay. Then Mum and I had dinner together before starting a rewatch of Unforgotten (yes, we’re on a bit of a Nicola Walker kick at the moment), while I did some diary writing. I’m so far behind, what with everything I’ve been dealing with healthwise and doing for uni. My anxiety over it is so high but so is my anxiety over my uni work so the two are constantly pushing against one another. I never have any respite from it and it’s exhausting.
I managed to go to bed reasonably early, which was an achievement, especially since I had to get up early the next morning for uni.
Again, I slept restlessly but with disturbing dreams that I couldn’t quite remember when I woke up; it just left me feeling kind of uneasy for most of the day, which wasn’t fun. I swear, I’ve had as many nightmares or disturbing dreams since the pandemic began than in my whole life up to that point. It’s horrible; I really feel for anyone who deals with this generally, independent of the pandemic.
I got up, got showered and dressed, had breakfast and pills before logging into my first class of the day. I could only stay an hour of the two (pre-arranged with my tutor) but we spent that hour identifying and discussing different kinds of hooks and how they’re used in songs. Then I had to sign off for a call about my rheumatology referral. It seriously cannot come quickly enough; the pain in my arm, hand, back and legs is only getting worse as time passes.
Before I got down to work, I checked my Spotify stats and saw that the Honest EP has surpassed 30,000 streams. It’s a weird feeling, knowing that so many people have heard these songs. A good feeling, but a weird feeling. I can’t really describe it.
I spent several hours working on my essay, all but finishing the first draft. So that was a good bit of work done – more than I can usually manage between classes. I had some lunch, some time to dedicate to my diary writing, and then I was signing back into class.
The afternoon’s workshop was a productive one. We got through a lot of songs and we had some really good discussions, despite only having an hour. Everyone was really lovely about my song, which meant a lot since it was such a personal one. I also had questions about the grading criteria and learning outcomes because I find the language very unclear and that lead to a good conversation about the assessment as well as inclusivity and accessibility of the course. So it felt like a really positive class, in all sorts of ways.
When my class finished, my Mum and I FaceTimed with my Granny for her birthday and I also got to see my aunt (they’re in a bubble together), which was really lovely. I don’t think I’ve seen either of them in person since Christmas, which has been hard, even knowing that it’s the right, responsible thing to do. It a weird world – a difficult world – when the best way to love someone is to stay away from them.
I also FaceTimed with one of my parents who’d had a particularly rough day. So it was a very social day! It was good to do but I definitely felt drained afterwards.
I was having some downtime, doing some blog writing and watching TV, when another of my other parents called me and told me to change channel to a very cute programme about puppies. It was indeed very cute and it did make me wish for a puppy again, not that we intend to get one in the foreseeable future – we don’t have enough time to properly devote to one so it wouldn’t be fair. But I’m always up for any puppy time I can get.
But the best bit was how one of my cats, Mouse, reacted to it. She was fascinated by the puppies, even patting the screen, trying to touch them. It was utterly adorable. She sat patiently through the advert break and was just as absorbed by the puppies when they returned to the screen. She watched intently for the rest of the programme and then, when the credits rolled, she got up and walked away. It was the funniest thing.
So that was very adorable.
Mum and I had dinner with another few episodes of Unforgotten and I finished my essay. Well, the first draft anyway. It needed a read through and a tidy up before I sent it off but what I’d wanted done for my tutorial session was essentially done. A productive day’s work and in bed before eleven: not bad at all.
So Lockdown 2.0 has ended, not that it felt like much of a lockdown. If you’re going to call it a lockdown, then you have to do what you did in the first lockdown and shut everything down. Otherwise it’s not going to make a difference, people are going to have even less faith in it as a safety measure, and they’ll flaunt the rules because they don’t think it matters. It’s been driving me up the wall. I’m so frustrated: with the government, with the people ignoring the rules (and boasting about it), anyone who is putting casual convenience over the safety of others… Yes, that’s a generalised statement. I’m aware that there are important and necessary reasons to go out but there just seem to be so many people who just don’t care that we’re still in a pandemic and I find that incredibly distressing.
I woke up at eight and intended to get up but then suddenly it was quarter past nine so I must’ve accidentally gone back to sleep. I did manage to get up then and headed straight for my desk to record the vocals for the song I’d been working on with Richard. Even though I love it, for some reason, I find it really hard to motivate myself to start recording so it seems that the easiest way is to just get up and do it before I can get into a procrastinating mindset.
That done, I had breakfast and a shower, leaving me with just enough time to tidy up my essay and send it to my tutor before heading out to have a blood test. I had one a month or so ago and it showed dangerously low Vitamin D levels so I’ve been on a high dose Vitamin D supplement to try and build them up again. This blood test should tell us whether they’ve helped and what the next steps are.
It was almost dark by the time we got home so we settled down in the living room, lit a fire (one of my favourite things about this time of year and about this house – the fireplace) and continued watching Unforgotten. I also kept working on my Lockdown 2.0 blog post. I’d been keeping the list updated throughout the lockdown so it was just a case of tidying it up, adding all the right links, and writing an introduction and conclusion.
I had to stop in the middle to sign in to my tutorial. I had a really good session with my tutor. He was complimentary about what I’d already done and had some really good feedback so I feel pretty good about my next steps. I know what I need to do and now I just need to do it. Then I get one more tutorial before the holidays for any final feedback or guidance. The deadline is in sight, which is more than a bit scary. I just really, really want to do well.
I was exhausted afterwards but I still managed to finish and post the Lockdown 2.0 blog. So I guess it was a pretty productive day.
That done, I had a quick scroll through social media and saw that people had started to post their Spotify stats of the year, both as listeners and as artists. I always find this difficult, regardless of any rational talking to I give myself, regardless of whatever I’ve personally gone through or achieved that year; it just taps into my lifelong insecurity of not doing well enough, not being ‘good enough.’ So it’s not easy. This year should’ve been different, with four of the five tracks from my EP being released since January, but Spotify doesn’t count anything after 31st October and with ‘Honest‘ coming out on 30th October, only one day of its streams were counted. So my most successful song wasn’t a part of my Spotify Wrapped, making it completely inaccurate. So I haven’t shared it – haven’t wanted to – and I feel a little bit robbed of that. I have included the percentage increases here but in reality, they’re a good bit higher since ‘Honest’ did so well.
Hopefully next year, or whenever it is that I release more music, the figures will be more accurate and I’ll feel confident in sharing them. This ‘comparison anxiety,’ as my friend called it, was something I really wanted to work on in therapy this year but even when I’ve felt able to ‘go’ to therapy, it’s been difficult to get much further than damage control around the pandemic. That’s been really difficult – a real frustration – this year. I’ve just felt completely stuck at therapy: while I want to move forward, I’ve only felt able to maintain the fragile balancing act I’ve managed to create. And I haven’t even been able to do that a lot of the time.
Early evening, my Mum and I FaceTimed with my Granny before having fish and chips with one of my other parents. We watched the new episode of His Dark Materials (Series 2 Episode 4) and it was so good. Oh my god, that cliffhanger!
I was just getting ready for bed when I felt the pain in my back. It had been aching all afternoon but that’s not unusual right now but then it started to get worse, sharper and higher. It came on so suddenly that I couldn’t get from the bathroom to the bedroom without Mum’s help and then, when I collapsed on the bed, I couldn’t move because the pain was so bad. It seems to come in waves: there’s the pain and then it surges like a series of electric shocks before finally (FINALLY) receding back to the original pain level. And I never know how long it will go on for; sometimes painkillers seem to make a difference and sometimes it seems to go on for ages regardless. I’m not entirely sure how long this one went on for but it was at least half an hour. And then it always takes quite a long time for me to get my body to relax afterwards, my muscles having been so tense while the electric shock pain was so bad. So even though I was exhausted, it took me a long time to get comfortable and drift off.
It took me a long time to get up because I was so stiff and sore. The rheumatology appointment can’t come soon enough. I struggled through breakfast and a shower and then had a Zoom production session with Richard, continuing to work on the song we’d started on the Monday. Considering how out of our normal styles the song was, I think we did a good job, especially for a demo and I’m definitely interested to hear what my class have to say when they hear it.
We also had some chill time, just chatting and hanging out, almost like we would if we were actually together, which was really nice. We’re coping with remote sessions but I cannot wait to hang out again properly, have face-to-face writing sessions, and actually do things together. Or not do things together but do that together in the same room, if you know what I mean.
When we finished, I did a couple of FaceTime calls with family and then collapsed on the sofa. I was completely exhausted. Me and Mum watched the last episode of Unforgotten Series 3 and oh my god, it gets me every time (if you know, you know – I’m not going to spoil it but the acting is incredible). Nicola Walker does not get the credit she deserves, although from what I’ve read in interviews, she seems to be pretty happy just buckling down on great projects and not doing the whole spotlight thing. (I’m so annoyed with myself that I missed seeing her in The Curious Incident of the Dog in the Night-Time – I would love to see her on stage and it’s such a great book.)
Mum and I were having a relatively chilled evening until I asked her about her call with my doctor. There had been multiple things to update her on and ask about but some of the advice she’d given was just really triggering and upsetting. I will talk about it at some point because I think it’s an important thing to have conversations about but it’s not something I’m personally ready to talk about yet. But it really upset me and just killed the warm, cozy mood of the evening.
And then, to make matters worse, Mouse (the cat) brought in a dead mouse, which is something that almost always sets off a meltdown (fortunately Mum understands this and is okay with dealing with it while I do my best to avoid said meltdown). I managed to remove myself quickly enough that I didn’t have one but it was just the final straw on what I could handle that evening so even though it was still quite early, I went to bed. It was all just too much.
I slept for about twelve hours but I still woke up feeling exhausted, depressed, and miserable. I feel like I spent most of the first lockdown working really hard to get my mental health into some sort of box so I felt like I wasn’t constantly overwhelmed but most days, it still feels like I’m walking on a tightrope and it takes so little to knock me off and back into that suffocating depression. And that’s exactly what the night before did.
I really struggled all day. I just felt completely unmotivated and so, so tired. I was also having to deal with side effects of my antibiotics – they left me with a disgusting taste in my mouth all the time – which was just an extra strain. I only had one day left so I tried to focus on that but it just felt so much harder than it would’ve had I not already been feeling so awful. I did manage to finish and post the blog post about What’s Next for the Honest EP so that was good to do and helpful for my mental state – ticking stuff off my list always gives me at least a bit of a boost.
The good news of the day was that Kalie Shorr had re-released (I guess) her debut album, Open Book (which I wrote about here), but as Open Book: Unabridged, the original album plus four more songs. ‘My Voice’ and ‘Lying To Myself’ had already been released as singles and she’d played ‘Eighteen’ during her livestream concert but ‘Out Of It’ was completely new, which was really cool. They’re all stunning songs and all in their own way. ‘My Voice’ is empowering and unapologetic, as well as a very effective middle finger at the Country labels in Nashville. ‘Lying To Myself’ paints an aching authentic picture of insecurity after a break up with incredible lyrics like, “I picked out all my favourite things you said, then like a delusional architect, I built you up like a house of cards” and “You liked it up on that pedestal ’cause damn, you looked incredible, but coming down’s inevitable.” ‘Eighteen’ is a brutally honest, heartbreaking song about looking back at a relationship that really wasn’t okay, where you were all in but you were only ever treated badly. And ‘Out Of It’ is similar to a previous Kalie song, ‘Awake,’ but this time, she’s saying ‘no’ and isn’t going to get pulled into the bullshit; this time, she’s cutting the cord between herself and the other person. And because I’m a lyric nerd, here is my favourite (or one of my favourites) from each song:
My Voice: “Too rock for country, too country for punk / But who said I had to pick either one / Tattoos at the Opry / I could cover em up but it’s not me”
Lying To Myself: “I’m a little out of touch with reality, it’s never been that nice to me / I like the pictures I paint the best”
Eighteen: “I see you out with younger versions of me / While I’m trying to find who I used to be / I’m terrified that you and I will always be chasing eighteen”
Out Of It: “Your mom and dad put you through hell / You tell your secrets ’til you scare yourself / It’s a big dramatic entrance then you leave / And now I’m the girl I said I’d never be”
Late afternoon saw me dragging myself through some preparation for a mental health assessment that I have coming up, which was another thing I needed to do. But I was so tired that it took forever and I spent a lot of the time it took with my head on my arms, just trying to think. It was just a really bad mental health day. There was no way around it so I just tried to get through it. I was too tired to do anything really but I still tried to write my blog post about the UniversitiesUK Conference. I find it so hard to just do nothing; it causes me a lot of anxiety so even when I’m exhausted, I’m still desperately trying to do something.
By necessity, it was a quiet evening and I went to bed early, all too aware of how soon I had to wake up again to watch Maren Morris’ livestream concert.
After MANY alarms, I struggled up at 2am to watch Maren Morris’ livestream concert. It felt very strange to not be a part of the crowd, singing (or screaming) along with her but it was so good to see her perform and hear her gorgeous voice again. It was very comforting, like a reminder that some things don’t change. The world might’ve turned upside down but Maren Morris is still Maren Morris, an exceptional songwriter, singer, and performer. So I was really grateful that she and her team put together this show for us.
I didn’t get back to sleep until about five and couldn’t be roused for anything. I eventually woke up at twelve and then I felt so tired and heavy that I could barely get out of bed. I spent several hours unable to do anything but lie on the sofa and watch TV. Disrupting my sleep patterns always throws me for six and with the depressive feelings still very overwhelming, I was really struggling.
Eventually I managed a shower, which completely exhausted me. It also makes me feel sick and dizzy to stand up for the amount of time it takes to sort the shower, have the shower, and then get dried and dressed. One more thing on the list of things being investigated.
Back in the living room, I put on Lucifer and attempted to do something productive. Mostly I ended up jumping between this and my diary, writing a few sentences here and there before switching back, just too tired to think enough to write anything decent. So that was frustrating, plus I had the nerve pain in my leg again – not the electric shock version but the bit that always comes before that (even if it doesn’t turn into said electric shock feeling) where it aches deeper than feels physically possible. So that didn’t help.
Mum and I had an early dinner and then she went for a swim. I really wanted to go and felt like I should – I’d been looking forward to it ever since the pool closed for lockdown – but I just had absolutely no energy. So she went and hopefully I’ll feel able to go next time. I got some good writing done though, so at least the time didn’t go to waste.
Having gotten up so late, I ended up going to bed too late, which was a bit of a pain. My sleep schedule is so easily knocked off course and then so difficult to correct. It was worth it though. Seeing Maren Morris perform is always good for my soul.
I slept restlessly and struggled up around ten. I still felt incredibly depressed and it took a huge amount of effort to just get out of bed, into the shower, and up into the living room. I had a quiet day, not that that I think I could’ve managed anything else. I managed to finish and post my blog post about speaking at the UniversitiesUK Conference. I also finished all the paperwork for the upcoming mental health assessment and worked on the interview questions my university had sent me about doing the conference (that interview has since been posted). So, considering how awful I felt, I did manage to get something out of the way and check some things off the ongoing list, which – as I think I’ve said – at least helps me to keep my mental state from sinking lower. Having said that, I don’t want to promote the idea that being constantly productive is essential for your mental health; I’ve just found that, if I can tick something off of my to do list, even if it’s something tiny, then that can help me to keep moving forward, help me not to get stuck in my depression. It doesn’t always work; sometimes I just have to surrender to a bad day and hope that the next one will be better. But trying , even if not succeeding, does seem to do something positive.
In the evening, one of my parents came over and the three of us had a chilled evening, eating dinner in front of the fire and continuing our rewatch of Lucifer. It was gentle and undemanding and I did feel better for it. I often simplify my mood into two levels: surface and deep. And in this case, even though my deep mood was still very depressed and twisted up, my surface mood was a bit lighter. Calling it a surface mood doesn’t, to me at least, make it any less important than the deeper mood; it just means that it’s the mood that deals with the day to day stuff while the deeper mood is the one that you carry inside you and the one that sits with all the big, important stuff in your head and in your life. I guess, I see this mood as the one that’s so intricately intertwined with a person’s overall mental health. For example, in the previous few days, I was depressed on both levels (I’m not sure how good a job I’ve done of illustrating that but it’s the truth) but after the Sunday evening, my surface mood started to lift out of that depressed place. My deeper mood was still there though (and still is as I post this). But the lightening of my surface mood did make it a bit easier to face Monday and the coming week.
I tried to go to bed early but as usual, failed. I swear, I’m desperate to sleep all day and then, at about seven o’clock in the evening, my brain snaps on and starts firing wildly, almost too fast for me to keep up with my own thoughts. It’s so frustrating. It’s almost as if my brain has got day and night confused.
So there you have it: another week completely different from the last. I think I’m grateful for that – it must be better than feeling like you’re stuck in a hamster wheel surely – but it’s not without it’s difficulties. When planning is the thing that makes life easier to bear, it can be hard when each new week seems to bring something unexpected.
You guys seem to like these posts so I’ll be sure to do another one soon but probably not until the new year. Touch wood, I can get all of my coursework done in the next ten days and then I can have some time off (although I’m not exactly sure whether it will feel like time off – my brain already has an anxiety fuelled to-do list waiting for me – but I’m going to try my best.) Anyway, I hope you enjoyed reading this and I hope to see you in the next post.
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:
- Increased uncertainty and anxiety – These are common and sometimes very extreme difficulties for autistic people but they have been seriously exacerbated by both the pandemic and the changes within education, which make it much harder to function at their normal level.
- The stress of adapting to new methods of learning with no adjustment time – This, of course, will create more anxiety, potentially making it more difficult to adjust and engage.
- A new and unfamiliar approach to practical classes when online learning is the only option – Same as above.
- Communication challenges in online classes – Difficulty with eye contact may mean missing out on elements within the class and difficulty reading body language (as we are receiving a fraction of what we usually do when engaging with people) can make it difficult to interact in a learning environment or lead to misjudging situations, creating more anxiety, which will only make an autistic student withdraw more.
- Navigating communication in blended classes – Personally, I had difficulty interacting with the group onsite: the picture and sound quality made it difficult to follow what was happening; the position of the camera meant I couldn’t actually see anyone’s faces, which made it extra hard to communicate when you’re already struggling with communication difficulties, such as knowing when to speak in a discussion; I could only communicate through the chat, which only my tutor could see and she obviously couldn’t spend the lesson checking it just in case I’d said something. It can be a very tricky set up. Eventually all of the online students on my course were moved to one group to avoid those problems getting in the way of an already content heavy course.
- General lack of awareness around Autism and related difficulties heightened during this time – Autistic students are struggling much more than pre-pandemic and need more support, which often isn’t available due to a lack of understanding, while they may have been able to navigate around that pre-pandemic.
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.
- A designated point of contact – Consistency is not only important because consistency is helpful in general for autistic people but it also means an autistic student doesn’t have to keep explaining their situation. Having a specific person to reach out to for help or support (whether academic or wellbeing) can help an autistic student to feel safer in what can be a very stressful environment. (Note: it’s definitely more beneficial if the person is generally available and accessible – not just on certain days at certain times.)
- Sharing of information and change of plans with time to adjust – Processing information and change and the emotions those trigger can be time consuming and exhausting and so having advance warning allows you to prepare yourself according to your own strategies and also potentially getting in contact with anyone involved, i.e. tutors for the sake of awareness or support.
- Clearly stated expectations – This reduces anxiety and the potential for miscommunications that can cost autistic students time, energy, and grades.
- Flexibility around assessments – Where possible, the autistic student and those responsible for the assessments need to communicate and determine the student’s areas of difficulty and how to accommodate them, making sure that it really is the student’s ability that is being assessed. For example, my high anxiety results in high levels of fatigue so long exams or presentations are a struggle for me, meaning that I need breaks or the assessment is split into sections. This does, of course, depend on the type of examination.
- Regular contact with tutors – Having a good relationship with teachers or lecturers both reduces general anxiety but also means that an autistic student will feel safe to ask for help if they need it and having semi-regular check-ins pre-empts any potential problems.
- Understanding from staff – Having staff be open and willing to support you, even if neither of you know quite what that might look like, is a very powerful and reassuring thing.
(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.