Autistic Students: Coping With Change – Speaking at A Conference!

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.

Mourning A Public Figure

Last week was the two year anniversary of Claire Wineland’s death. She was a twenty one year old activist, raising awareness around Cystic Fibrosis and founding Claire’s Place Foundation to support children with Cystic Fibrosis and their families. She spoke at many conferences (including TEDx and the International Respiratory Convention and Exhibition) and posted multiple videos on YouTube, talking about her illness but also her life and her thoughts on various subjects.

In 2018, she went into hospital for a double lung transplant. I remember watching the Instagram Live where she announced that she’d received the call as she dashed around her home, gathering everything she needed. It was so exciting and I was so happy for her. She had the surgery and everything seemed to be going well. But then she had a stroke and a week later, according to her advanced directive, was taken off life support. She died on the 2nd September 2018 at the age of twenty one. I wrote several posts about her, including one in remembrance.

I was deeply upset at the news of Claire’s death. When I discovered her YouTube videos in mid-2017, I instantly fell in love with her personality, her eloquence, her thoughtfulness. I really felt a lot of the ideas she expressed and despite the fact that we’d had very different life experiences, it felt like we had something in common, something in the way we thought and felt. And despite only having a few interactions on Twitter, I felt a connection to her – obviously not the same connection as the ones I have with my friends, for example, but a connection nonetheless. She had a big impact on my life and when she died, I felt like I could feel the edges of the space in which she’d previously existed, like there was a hole where she’d been. It was a very distressing feeling.

Two years later and I still feel her loss. She was so full of life. You know how some people just seem bigger than others, have minds somehow more infinite, have something extra special about them? That was always the way Claire felt to me. I’d felt so sure that I’d watch her go on to do even more great things. Her death felt so unfair and it still does. It still hurts. The documentary about her, CLAIRE, came out on the first anniversary of her death and as much as I want to watch it, I haven’t been able to. It’s just felt too hard. One day, I will but I just haven’t felt ready.

Over the last few years, I’ve had several similar experiences. The first, I believe, was Cory Monteith in 2013. I was still watching Glee at the time and he was so young; his death was so sudden. Then there was David Bowie, who has always been incredibly important to my brother, and Alan Rickman, who had been a consistent presence in my life through his role in the Harry Potter films. If you’ve read previous posts of mine, you’ll know how important Harry Potter has been throughout my life. And more recently, there have been the deaths of Cady Groves, a singer I’ve been a fan of for a decade, and Naya Rivera, another Glee alumni.

I struggled with each of these deaths, all of these people having had an impact on my life. But I think the only death that has had as dramatic an effect on me as Claire Wineland’s was that of Christina Grimmie. I’d been following Christina on YouTube for years; I just fell in love with her voice and her piano playing, how unapologetically herself she was. She was about my age and pursuing music so it’s not surprising that I related to her. But with managing both my mental health and university, I’d fallen behind on a lot of people in my social media bubble, Christina included. Then I woke up one day and she was gone; I still remember the moment I found out. I was stuck in a state of paralysed shock for days and I had nightmares that went on for months. Much like with Claire, I felt like there was a hole in the fabric of the universe where Christina had been, should still be. Even now, I still think of her often.

Grieving for a celebrity or public figure can feel like a bit of a minefield, I think. There’s the internal conflict: you didn’t know them personally but the feelings are still very powerful. Plus there are always people ready to tell you that you don’t have the right to mourn someone you never actually knew and because you didn’t know them, whatever you’re feeling can’t be grief. But personally, I don’t agree.

Grief is an incredibly complex emotion. I don’t think anyone truly understands it. Personally, I wouldn’t classify it as a single emotion; I see it more as an umbrella term, a checklist of things you may experience although you won’t necessarily experience all of them. I don’t think there’s a big enough word to describe what we go through when we’re grieving. It’s a natural disaster, an emotional natural disaster. It’s so complicated and having lived through both the losses of people in my life and public figures I cared (and still care) about, it’s my experience that the two are definitely different (having said that, we could have a whole other conversation about how the grief for each person is completely different) but that they’re both real and they’re both profound.

I definitely want to write more posts about grief but I want to keep this one to the grieving of a public figure. As I said, it is, of course, different to losing a person who is physically in your life but if you feel a connection to someone, it is inevitable that their death will be painful. As far as I’m concerned, that connection is the key. Whether they’re an actor, singer, writer, activist… they’re all reaching out, with their stories, their songs, their words. They’re reaching out with the intention of creating a connection with another person, a person who finds meaning in what they have to say. And I think it’s fair to say that – often – the deepest connections are the ones that are built from the most personal places (for example, their presence or their work has gotten you through a difficult time, you relate strongly to something they’ve said or created, etc). So of course we would feel the loss that connection. Of course it would be painful and distressing and maybe even traumatic.

And then there’s the moving forward to consider. There will always be things that remind you of them, such as events they would go to or public appearances they’d make. And in the case of creatives, yes, we will always have their past work but that may be difficult to consume again: the emotions and memories associated with them may be overwhelming; it may be painful because it reminds you that they’re no longer here; if they helped you through difficult times, it may be difficult knowing that they won’t be there to help you through any future hard times; knowing that they’ll never create or release anything new may be distressing, especially when the release of new work was a big occasion in your life.

I think that the only way to truly move through an event like this is to talk about it or, at the very least, express your emotions:

  • Hopefully your loved ones will understand what you’re going through, especially if you’ve mentioned this person before or they’ve seen or heard you consuming their content, whether that’s listening to their music, watching their videos, or reading their works. If you can talk to someone close to you and at least get your emotions out of your body; sometimes I think that keeping the emotions stored inside your body only makes them harder to shift further down the road. (If someone you don’t feel comfortable telling the whole truth asks you why you’re upset, you can always tell them that a friend or someone you know has died – that will explain your mood and they’re unlikely to ask too many questions.)
  • You can express your feelings on social media, if you feel comfortable sharing with an unknown audience. Sometimes that can be too scary but sometimes it can be cathartic to put your thoughts out into the world, not knowing where they’ll go or who they’ll reach.
  • You can write a letter to the person who has died. I’ve always found writing to be a good way of getting my emotions out. If you want to, you could post it online if you keep a blog or something similar, or you could simply keep it for yourself as a reminder of what they meant to you and everything you felt at that particular moment in time. When it comes to such an emotionally charged moment, in the future you may want to remember everything about the experience. You may not, of course, but you can’t know that in the present moment.
  • I’ve always found journaling to be very helpful in coping with and managing the ebb and flow of my emotions. Since it’s just for me, I can feel and say whatever I like without fear of judgement, which I think allows me to move through each emotion with less friction. Putting words to what I’m feeling somehow makes it all easier to process and work through. It doesn’t necessarily mean those feelings go away, but the strength of them does become easier to cope with. And then at some point, they simply become a part of you, a piece in your mosaic.

I’m sure there’s more to say. When it comes to grief, there always is. But I think I’ll leave it there. I hope you leave this post knowing that whoever or whatever you grieve for, your grief is valid and I hope that, if you’re going through any kind of grief, that you’ve found some way to manage it and/or that you have people to support you. I’m not sure if it ever goes away but it does change. Life goes on, even if it feels unbearably unfair. So carry with you the gifts they gave you and try to do some of the good that they would be doing were they still here.

The Second Semester of My Masters

So, that’s it. I’ve finished the second semester of my Masters Degree. That’s a very weird thought. I kind of can’t believe I made it. But I did. And I wanted to write about it, like I wrote about the first semester because all of this is weird and wonderful and difficult and part of the journey.

This semester, the module I studied was called Musicology (“the scholarly analysis and research-based study of music”) and my classes were split into two different blocks. The first was a series of lectures, each based around a different artist/songwriter and a specific element of their career, like David Bowie and identity, Prince and authenticity, and Max Martin and his use of melodic math (not all of them were men – these are just the ones that are coming to mind as I write this). I’d expected it to be based more around elements affecting music and it’s creation and consumption, like the history of certain genres, feminism, the constant evolution of technology and social media, rather than specific artists but maybe that was a misinterpretation on my part or simply a different approach that could’ve been taken. I don’t know. It was interesting and I learned a lot but a lot of the reading was very academic which I struggled with, given that I’m having  some trouble with what you’d probably call my cognitive processing. Having said that, we had a great tutor who is really passionate about the module, which made it so much more enjoyable and engaging than a lecture heavy module could’ve been.

The group was larger than I was used to but there were a lot of familiar faces, including my two closest friends on the course. That was definitely a positive, both because I love them and because it helped me to adjust to all the changes. But it was also nice to meet some new people and get to know better the ones that I sort of knew and wanted to know better. So that was really nice, even if it took me a while to adjust to the new group dynamic. I’ve made some good friends from that class, even though it was cut short by the lockdown (I’ll get onto that in a bit).

The second block of classes were practical classes where we discussed in further depth the techniques we’d covered in the lecture class (the technical skills and application) and then we’d go away and write a song based on those techniques. Some of the briefs were really inspiring but on the whole, I found the whole exercise frustrating and a bit of a waste of time. We’d just spent a whole semester working on our creative process and tackling our blocks and weak areas and suddenly we had no time to work on them any further because we were focussing on and trying out other people’s techniques. I just feel like I was finally making progress, particularly in my musical ability (I’ve always struggled when it comes to experimenting with different chords and chord progressions), and suddenly that progress was being curbed dramatically, making it really hard to invest myself in the songs I was writing for this class.

The assessment for this module was a single four thousand word essay on anything related to songwriting. Most people choose a songwriter and then focussed on some aspect of their songwriting or the impact of their songwriting in a certain area, like feminism or the genre they were part of, for example. I really didn’t want to go through the overwhelming stress I went through at the end of the last semester due to lack of clarity around the assignments so I spoke to my Module Leader (who was also my tutor and a tutor I’ve known since my BA) really early in the semester so that I could be as prepared as possible and when I presented the potential subjects I had in mind, he gave me some really good advice: choose the one you’ll learn most from. So I decided to investigate Taylor Swift’s use of imagery and how that links to the authenticity in her songwriting, specifically in her song, ‘All Too Well.’ I thought that would benefit my songwriting the most, since those are elements that are important in my writing and therefore knowing more about them could only strengthen my use of them. So, alongside my classes, I slowly started to gather research about those topics.

I was still researching (I readily admit with the help of my Mum because I found myself struggling so much with the academic language and with my cognitive functioning) when the Coronavirus reached the UK. Classes continued but as a course (there aren’t a huge number of us and we have a group chat on WhatsApp where we’re in constant contact with each other) we discussed the situation and came to the collective conclusion  that we didn’t feel safe travelling to and from uni, as well as being in the busy setting of a university. Our representatives contacted the senior staff and not long after, our classes were moved online. I think it was a week or so after that that the lockdown was announced.

Initially, not much changed for me, apart from the fact that I was no longer commuting to London for my classes. I attended the online classes, did my work, and researched for my essay. Determined not to go through a last week of panic writing, I got to writing as soon as I had enough material and added as I learned more. My tutor was fantastic in recommending sources when I got really stuck (there’s not as much research on imagery and authenticity in song lyrics as you’d think) and giving me some excellent feedback when I finished my first draft, still with plenty of time before the deadline. He’s been amazing throughout the whole module and I’m really grateful. I, again with my Mum’s help, went through the feedback and did the best we could to improve and strengthen the essay before submitting it just under a week before the deadline. So no last minute panicking. I think I did the best I could under the circumstances. But it wasn’t a solo effort. They’re my ideas and my words but I would NOT have been able to do it without my Mum’s support, and gentle pushing on the days where it just felt too hard. I couldn’t have gotten through the researching, the writing, or the editing without her. It is a better piece of work because of her help and I’m so incredibly grateful, both for her help on this assignment and throughout this module but also for her in general, for the ways she has supported me otherwise: helped me manage and protect my mental health, organised my life for me when it took all I had just to stumble through the days, for making sure I ate, even and probably especially on days when I didn’t want to. I’m so lucky to have her and I’m aware of that every minute of every day.

It’s been a weird semester. In a lot of ways it was smoother than the first, both because I was getting the hang of my routine as a Masters student but also because my mental health was more stable, if not necessarily better. I had some great, cherished times with my friends but then they were all suddenly ripped away without proper goodbyes by the lockdown (thank god for video calls). I got to do some really fun cowrites, which were then suddenly stalled for the same reason. They can be rearranged and done by FaceTime or Zoom but it’s not the same: I find it much harder to be creative WITH someone when we’re not actually in the same room (plus the lag time makes singing or playing together a real challenge). I’ll make it work because I love cowriting and I love the people I’m writing with but I do find it harder. I was also really enjoying the lectures and discussions we had in class and online classes just aren’t the same. So what was mostly a pretty positive semester was cut off in its prime and I do grieve the way things could’ve been.

I’m done now. The full-timers have another semester but I’m free until the end of September ish. I’ve completed the first year of my Masters Degree. That’s a very strange sentence to write out. There were many, many moments where I was sure I’d have to defer, despite the fact that the thought made me feel physically ill. But I made it. It was somewhat anti-climactic, given that we’re all in lockdown: I uploaded my assignment, clicked a button, and that was it. Year One done. I don’t think I could sum it – or the emotions I’ve experienced – up if I tried, not without writing a PhD length post. It’s been good and difficult and inspiring and more stressful than I could’ve possibly imagined. I’ve learned a lot and I’ve met some wonderful people. I guess I’ll leave it at that.

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