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.

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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.