Neurodiversity at Glastonbury

I remember having a couple of mini meltdowns the night before going to a festival. And then there was this one time. One awful occasion when I had a full-blown meltdown at the beginning of a festival. I’d only been there one night and not seen any of the bands at this point. As usual, I feel it was a combination of factors, and it all became too much over time. So I had to leave. It was massively disappointing and upsetting. But I remember distinctly the greatest feeling of all. And that was *relief*.

The feeling of relief that it was all over. That I didn’t have to think about it anymore. I could stop. I could go home. Give my dog a cuddle. Receive sympathy from my parents and sister. Encouragement that I‘d given it a go. I’d tried my best. That I didn’t need to do anymore. I remember going to bed and remaining in darkness.

It wasn’t a conscious decision that I made at the time, but I never went back to a music festival where I had to stay multiple nights. I go to concerts and gigs in the day or evening. The odd Reading festival day ticket (I live in Reading), but that really is it.

And then there’s Glastonbury festival. I’ve wanted to go there my whole life. And in 2019, a group of friends finally got our acts together and registered to go. We didn’t get tickets, but I was convinced; there was this knowing inside me, that I would somehow be going. Post pandemic, there were no tickets available, and that was that. Or so I thought.

Back in April, I was invited to speak on the Neurodiversity ‘Fight for Human Rights’ panel, alongside Carly Jones MBE, Chris Packham and Sienna Castellon. An absolutely amazing opportunity!

The fact that neurodiversity is receiving recognition on such a platform is incredible in itself. So of course, I want to go. But this previous festival experience definitely hangs over me. And quite profoundly so…

But that was then, and this is now. And I want to be able to live my life. Back then, I didn’t know I was autistic. So that’s a huge deal of knowledge I’ve gained in the meanwhile.

So I will go.

I’ve requested reasonable adjustments and I’ve been granted access to respite areas, shortcuts to help me avoid mass crowds, as well as viewing platform access. All of this will help me considerably.

Part of me, and this isn’t just related to this Glastonbury experience, but I want to ‘just get through it’. And I feel so sad as a write this, as this is such a universal approach and feeling for me in life. To want to just get through an event or activity, and to simply ‘survive’ it. Because it always feels so hard all the time. I don’t expect this to magically change overnight, but I really appreciate the fact that I recognise this about myself, and would like to have an altered reality to experience instead. So I’m going to allow ‘fun’ into the equation. Which feels a bit daring to be honest. But at the same time, I know there will of course be fun moments. And scary moments. And frustrating moments. It will be a whole host of emotions and feelings. But I want to allow in the space for more positive ones. And to be open to this. Let’s see how it goes.

Post-Glastonbury

So, I made it back in one piece. And even managed to stay for the whole duration of the festival! This was a *huge* deal in itself; to last the whole way through and to not have a meltdown or shutdown. Amazing. Truly.

The discussion panel went well. I always get so nervous about public speaking, but having prepared so much (far more than I needed to), I felt that I could handle it. The best part about it was how well the discussion was received. The number of people that came up to ask questions or share their experiences with me after. This was incredible. I was also touched at the number of production/crew members who approached me the next day and told me how much the talk meant to them. Even a musician who had heard the discussion. The talk felt so validating to people and there was so much appetite for further questions and discussion. Though neurodiversity as a term has been around for years, people are at such different stages of understanding and resonating with the term.

It felt important to have been a part of the discussion and to have shared my experiences, and this helps me so much when speaking – knowing that it’s not about me and remembering how it can benefit and serve others.

In terms of the rest of the festival, I must caveat that I was able to stay in a campsite that wasn’t too busy and that we did receive support in terms of getting to and from my car with our camping gear. I appreciate this wouldn’t have happened ordinarily, but as a speaker, and the added stress I was carrying, I felt this support was much needed.

So did I feel overwhelmed and like I was going to have a meltdown? Yes. At various times in fact. But my one saving grace had to be Diverse UK’s sensory calm space. This was a tent area that you could go to and sit in with calm lighting, fidget toys, weighted blankets and beanbags. It was literally incredible and helped me so much. I spent an entire morning there one day. But interestingly, that was all I needed. For me, it was the knowing that I could go there at any point and be around people who ‘get it’ (the space is run by neurodivergent volunteers). And for me that was enough. I feel these spaces are so important to include when event planning.

The shortcut access was immensely helpful too and this is something that I would definitely ask for again, at any large event I attend in the future – if there’s the option. It meant that I didn’t have to be in mass crowds and not walk as far. The latter is especially important as it helps prevent burnout and I feel this sustained my ability to stay for the duration of the festival. With Glastonbury being so immense, a shortcut/access map and also more maps in general would have been appreciated, especially as internet wasn’t always available.

Interestingly, I didn’t use the viewing platforms. They were often centrally based in the field, and I preferred to be situated more to the side and away from the middle. I preferred the flexibility of where I wanted to stand and enjoy the music. The staff were all super friendly, as well as the other spectators, and this incredible vibe certainly helped my overall experience at the festival.

Was it worth it? Truthfully, I don’t know. There were many weeks of stress, anxiety and preparation leading up to the festival – all for four days.

Yes, they were four days that went well, and the experience itself stretched me, and I know that I can go to a multi-day festival again. That’s a great takeaway. And knowing that there is so much need around raising understanding and acceptance around neurodiversity also fuels me in wanting to do more with my work. I’m very happy that I did manage Glastonbury and get through the experience, and my hope is that such an event would be considerably easier next time.

To know that I’ve paved the way for what I hope will be easier times ahead, is probably the nicest, most encouraging aspect to take away from the experience.

Mahlia Amatina

August 2022