"It Is Exhausting": My experience as an autistic and disabled student during the pandemic
Featured image by Graehawk via Pixabay

As an autistic person, I thrive off routine, reject change and have a tendency to over analyse. So, take that and add a global pandemic into the mix- the results are not so good. I was in 2nd year of university when the pandemic hit. I remember hearing of COVID when I was in a lecture in early 2020 and I am ashamed to say I brushed it off.

However, as cases began to build, and talk of a national lockdown began to stir, I was greeted with the most nauseating sense of anxiety. A lockdown would mean a change in everything I knew. I just wanted to pass my second year and I truly believed that leaving my study space and being plucked up and put back home would mean I couldn’t. 

The day I knew it was all changing

One morning, my mum came to visit, seeing the state of anxiety I was in, took me straight home. We packed up my room in a day. I woke up in the morning thinking I’d be seeing my mum and then coming back to uni in the evening, but I’d moved out by 4 pm.

Like me, my university took a while to adapt. To be honest it took the rest of the second year. I had no online lectures, and my deadlines were just moved back  – but only slightly. I would like to add however, the lecturers really helped me through and were always at the end of an email. It certainly made it easier.

The first lockdown

There was something about the first lockdown that made it a little more bearable than the rest. I was at home, so my environment hadn’t changed to unfamiliar territory. There was also a feeling of newness that I would normally shy away from, but I tried to lean into it and make the best of a bad situation. By the third lockdown, I think we can all agree that that feeling had worn off. This is the case, whether you’re autistic or not.

Despite the brave face- I put on it all very much fell apart. I associate university with work and home with relaxing. So although I knew I still had work to do I barely managed to complete any of it. It just didn’t feel right working from home and it’s something I am still not adapted to, months down the line.

We had mitigating circumstances put in place, but even with those, I didn’t achieve the grades I wanted so badly. The second and third year count on my course and it was heartbreaking knowing I could do so much better with the right support. 

For me personally, the right support would look like: financial support so I wasn’t having to work harder to pay rent for a place I couldn’t live in, financial support in paying for a course I wasn’t having any lectures in, and basic care and kindness from a government who seemingly turned a blind eye.When an autistic person is stressed they often begin to shut down, in my case, the stress often leads to a meltdown. This looks like a violent temper tantrum but it truly isn’t. The only way I can describe it is a slow build-up of anxiety, which fills my whole body until there is nowhere for it to go. Due to my autism, I struggle to communicate how I feel verbally, so with no way to say how I was feeling the meltdown would burst out of me. It drains me completely until all I can do is sleep. This is no state to be in to complete university-level work.

It’s hard to admit, but the anxiety levels I experienced meant I often had to take medications to calm myself. They would leave me exhausted, but calm. I definitely wouldn’t be able to focus on these, however, so the work got left undone.

Reflecting on the positives

I am definitely one of the luckier students, I had access to a mentor who often guided me through my worries even if it was over the phone. My autism makes it difficult to communicate over a video call or phone call as I cannot properly read facial expressions. So although these calls helped, the lack of face-to-face contact made my support rather inaccessible. I do understand that there was likely nothing to be done about this issue, but it caused stress and worry nonetheless.

I also have parents who really do try to support me and take the time to learn to speak my language. However hard the situation may have been it is important to reflect on the positives. I managed to scrape by in all my assignments, even if a few film projects got delayed into the third year! I have to tell you producing a film is hard enough before you add COVID into the mix.

Third-year, second lockdown

We then entered the third year. I moved into my new university house in July, excited for independence after relying on my parents for too long!

Honestly, summer was bliss. I started to build a new routine, one where I was able to access my support network and doctors again, and I had contact with my partner who assists me from time to time. Whilst life was still so restricted, I had little pockets of joy because I truly appreciated the simple things.

Then the third year began. I was lucky, most of my lectures were completed in person, but I know I am in the minority of students. For the most part, this was fantastic, but masks were compulsory which sometimes did cause little sensory overload. However, as a vulnerable disabled person, who is susceptible to COVID, I much preferred wearing a filter mask to the alternative.

Speaking of ill-health, my physical disability (Ehlers Danlos) began to flare up again. I am quite certain this isn’t helped by stress. As we were in person, we had no automatic mitigating circumstances for deadlines. Slowly but surely, despite having in-person lectures, the stress of a final year, couples with the pandemic and my autism caused me to return to the state I was in during the first lockdown. I had face-to-face access to my mentor again which helped, but with masks in the way, I found it just as hard to communicate as I also read lips to process language. I became aware I was competing for high grades alongside students that may not have been as affected by certain parts of the pandemic as me. Of course, most students sadly now are experiencing ill-mental health due to neglect from both government and university.

During the second lockdown, I coped better than the first. I think this may have been due to the fact university was still open. I still had my routine, and that helped keep me sane. As an introvert, I wasn’t too affected by the lack of socializing, although I dearly miss my friends.

One other issue that has seemed to develop in the last few months was the need to over plan and hyper-fixate on the future. As much as I think this issue wasn’t helped by my autism, I think all of us, especially students have experienced this as a result of ‘pandemic trauma’. I have lost count of the number of times I have been told to look to the ‘brighter’ future for comfort. Taking comfort from the hope of the future is fantastic but -when you have an obsessive personality like me looking to the future became all I could think of. Overplanning and then being crushed when things don’t work out. I hate changes of plans in the best of time, but during a pandemic, its effect is magnified.

Third lockdown

Then the third lockdown came around. This time, no in-person university, back to completely online and inaccessible support and a cold winter to top it off. I truly believe this may be the worst point of my university journey. I am a third-year student looking down the barrel of likely canceled graduation.

Throughout this pandemic, I have been paying rent for a house I’m not meant to live in, completing a practical course that has to be done entirely online and accumulating a mounting debt that just doesn’t seem worth it. Yet, every plea seems to fall upon deaf ears, seemingly the only time students have been mentioned is to blame us for the spread of COVID. I could be wrong, but it does often make us students feel like we are here to support a business, not get an education.

No matter what I may feel, my mental health – which is already overly sensitive due to my autism – has declined. The main reason I believe for this is now I am not only having to advocate for myself as a disabled person, but as a student as well. It is exhausting.

On reflection, so much has changed throughout this pandemic but my autism hasn’t. I may be able to cope with change a little better, but now I am affected by the state of emergency we find ourselves in hasn’t. The only reason I really highlight this is to hopefully help you see we are facing two pandemics, mental health and COVID – and both are as deadly as the other.

So, when you next want to go and meet someone illegally, or just pop into a shop without a mask, think of the students who just want to graduate. Think of the disabled who rely on care from others, whether they have COVID or not. Think of those with autism scared stiff of this new and constantly changing world. Think of others, as cheesy as that may sound.

I don’t want to end this on a negative note. I hope my story has helped those who may be in a similar position. You will be OK, it may take a while, but in time things will improve. Until then, focus on tiny positives if you can. For example, I am going to do a master’s degree in September as I refuse to let this pandemic get in the way of the learning I love.

To other autistic students like me, look back, you are still here despite living in a time of huge change. You’re doing so well.