Issy’s 2020 experience.

We asked Issy (pictured, left) a young autistic person to share their experiences of navigating a full on 2020 with ongoing changes to everyday life as the world faced an unprecedented coronavirus pandemic.

Amaze is committed to sharing the lived experiences of autistic people and their families.  Keep an eye on our social media for opportunities to create content with/for Amaze and our online community.

 

Note: The below blog is written by an autistic person Amaze asked, and paid, to write. The views in this piece may not necessarily align with the views of Amaze or Amaze staff.

 

 

Written by Issy

We know that 2020 was an ‘unprecedented year like no other’, and a lot more combinations of over used descriptive words. It was the same for everyone, whether you’re autistic or not, but the particular challenges our community has faced have been considerably disproportionate, without any consideration for appropriate things to be put in place to support us. Having our routines entirely dismantled overnight – as well as not being seen as a priority – was traumatic.

I remember a number of times feeling completely lost and like my entire life was happening around me, completely out of my control. I remember feeling hurt and disregarded every time decisions were made about me but without me. I was in Year 12 in 2020, I worked in 2020, I was in hospital in 2020 and I moved out of home in 2020 – all whilst battling a global pandemic. It was awful and challenging and lonely. It hurt. But I know that due to the circumstances of this year,  I’ve had to make many adjustments while learning about what I need for myself going forward.I wish I hadn’t had to have these realisations and discoveries, but the stage we are at now, means I have no option but to choose to see the silver linings from this situation.

I have also become aware about some things about the world around me. Some of these things I understood deep down, but didn’t want to acknowledge. It felt like abled people, especially abled decision makers, did not care about me. Other things I only became cognisant of because of the pandemic – such as how important being out, and unrestricted in public spaces, is for neurotypical people.

As someone who lives in the Melbourne CBD, I definitely experienced the two extremes of lockdown. During the worst of COVID-19, I would see only a dozen people in total out on the large and eerily empty streets of Melbourne on my weekly grocery shopping trips. And within less than a week, after restrictions had eased, the amount of people in the city was close to twenty-fold of what it was before. While I understand the desire to get to do all the things that people weren’t able to do before and making up for lost time, it felt very challenging for those of us to whom large masses of people and routine changes are inaccessible.

Despite everyone else being able to change how they were interacting with the world seemingly overnight, it takes me a much longer time to be able to switch my brain into a new routine. This meant that my brain was stuck in the pattern where my meticulously organised and planned weekly grocery trips were structured around the low amount of people that would be out. So when I left my apartment to do my errands and was confounded and confused by the thousands of people in the street and in the shop, I wasn’t prepared on how to react. This meant I had panic attacks and was struck into a space of executive dysfunction. More than anything, the fact that I had no warning, because I had no reason to believe that the entire city would be full after months of emptiness, was the most jarring of all.

By force of necessity I still had to do my grocery shopping, because I needed food to survive, but I noticed the amount of time I would spend in the store was drastically shorter and I always seemed to end up with things forgotten or stuff that I didn’t even want because my brain was so foggy with focusing on just getting out of there. It was incredibly frustrating, and felt like it was all my fault, because seemingly everyone else was having a good and easy time adjusting, so it was all on me. When life is so inaccessible I forget the social model of disability is why I am disabled and not because something is inherently wrong with me, it is a sign that things need to change.

I am still adjusting to the new routines I am setting up for myself, along with how that intersects with the new routines of all the abled people now walking around in the space I exist in. I am fearful for a third wave, both for the fact that COVID-19 is scary and people aren’t considerate of how that interacts with someone with disabilities like myself, but also because I will be expected to do the neurotypical thing and completely change my life overnight without any hassle. I want to be able to quickly shift my brain and routines as soon as it is necessary, but I truly wasn’t built for this. My brain is literally wired differently which makes this impossible, and that’s okay. But I need decision makers, service providers, and most importantly the abled and non-autistic general public to understand that.

How we learn from the challenges of this year is how we grow as a society. It is not good enough to simply look to the future and forget everything that has happened because it is easy for abled people to do that. If we do that, we deny the responsibility to support autistic people, and that is not good enough. We deserve more than to be forgotten.

 

Issy (they/them) is a disabled and queer young person living on stolen Wurundjeri Woiwurrung and Boonwurrung country. They work for a youth and disability organisation, just completed year 12 and are a freelance writer.