Do I Want to Go to a Desert Rave?

Hello folks. This post came about through a mixture of my own independent thoughts and listening to the latest episode of the podcast over and over again as I edited it, thus causing me to reflect deeply on some of the things that Gemma, Georgie, Matilde and I talked about. I am referring specifically to our conversation around fears of being left out and the assumptions that other people make about us and our capabilities. I realised that I have a lot more to say on this topic and, given I am able to structure my thoughts better when I write, I thought it would make for an interesting post!

In the past year or so my confidence and security in who I am as a person has risen to an all-time high. That isn’t to say it is actually high, rather that it is higher than it has ever been before —insofar as I can remember. I don’t know exactly why that is. I suspect it’s a combination of a few different factors: doing my last year of university part time, forging lots of new friendships, starting the blog as a passion project, etc. Therefore, while there are still a lot of different aspects of my life that feel out of control and overwhelming, my relationship with myself is finally, finally improving. And this means how I view my relationships with other people has changed.

It was mentioned in the podcast and it is a line that I have heard multiple times throughout my life. “Real friends won’t care about your disability, and they will make things inclusive.” It’s a statement that I wholeheartedly agree with, and yet it also fails to address the thought that burned at the back of my mind for so many years. Is it better to have friends who don’t always include you and so aren’t perhaps “real friends”, or is it better to have no friends at all? It’s all very well telling people that those whom they are surrounded by aren’t “real friends”, but if they don’t have anyone else and the only alternative is loneliness… what can you realistically expect them to do?

One thing that I have been learning is that while most people are not intentionally mean, that doesn’t give them a free pass to treat you in a way that is disrespectful or diminishing. A person does not have to be awful or cause you serious harm for you to set up boundaries or remove them from your life. Sometimes people are just not good for you. Talking to them about what is bothering you is always useful if you can manage it, but sometimes that either isn’t an option or it gets you nowhere. If you find yourself feeling hurt, frustrated or even angry after a conversation about your feelings, then there is no shame in walking away from the situation and finding another (healthy) way to manage your feelings.

I want to give an example of what I am talking about when I say people aren’t intentionally mean, but that doesn’t give them a free pass. This example involves myself and a group of friends coming home after a trip abroad to celebrate the end of our sixth-form exams. We had left the airport and were looking to get on a train into central London to allow us to get back to our respective homes. When we got to the platform, we found that the train we had planned on taking had been cancelled, and so we spent a few minutes on our phones trying to work out which of the other trains we could take. There was a train in roughly 2 minutes that would go into London, however, that train would require us to take the tube. With a definite sense of rising panic, I explained to my friends that I was unable to go on the tube because it was too overwhelming, and asked if we could wait for the next train which was in about half an hour, as that one would take us directly to where we needed to go. All of my friends, bar one, decided to get on the train that was now due momentarily.

At the time I thought nothing of it. Why shouldn’t they get on the train that is due next? I was the one that was causing the problem so why shouldn’t they just leave me? It was not until relatively recently when trying to fall asleep, that I suddenly remembered that memory and realised, had it not been for that one friend who remained, I would have been abandoned at an airport train station. Looking back, I find it difficult to work out how I feel about that. I’m not exactly angry but I’m certainly not happy with what happened. After consulting my feelings wheel, I have landed on a mixture of resentment that they would leave me, sadness because I didn’t even care, and a lingering sense of inadequacy that I was the one that forced us into that situation. Logically I know what happened wasn’t my fault and that after spending a week together abroad, the least they could do was wait half an hour so that we could ensure we all got home, but it doesn’t detract from the shame I felt watching them get on the train while I stood on the platform, all because I can’t travel on the tube. In a satisfying twist of fate, the thought-to-be-cancelled train arrived at the platform minutes later and my friend and I were both home before the others managed to get out of central London.

This example highlights a key point that I want to make: many decisions about how you let other people treat you, especially with respect to accommodations, is linked to your own self-worth and whether or not you feel worthy of other people’s effort. At that time, I didn’t think I was worth the group waiting for an extra half an hour. Now? Unless there was an emergency, I would be insulted if a group made the decision to leave me behind. Not only would it be akin to them saying “we aren’t willing to make small adjustments to accommodate you”, but it would also put my safety at risk. The vast majority of autistic people make accommodations and sacrifices all the time for non-autistic people, many of them going unnoticed. It’s tiring living around people who don’t experience the world in the same way as you do, but far less so if they are willing to learn and to stick by your side.

I am already insecure enough as it is without other people making me feel embarrassed about my limits. There is an almost constant struggle between wanting my independence and asking for help when I need it. Making small adjustments for me is so incredibly meaningful because it means I feel less worried about asking you for help. Already having small issues resolved, such as music and flicking lights, not only means that I will likely be able to maintain my energy level for longer, but it also means that if at some point I have to ask for something specific, I won’t be worried about potentially ‘badgering’ you. I hate being the person who has to ask for lots of different things to allow me to exist in peace, but at the same time I usually need them if I am to function at my best. Not only this, seeing you make those small accommodations means I instantly feel more validated and respected. In the same way that a person buying your favourite snack for you when you come and visit makes you smile, seeing that a person has specifically thought about how to make me feel more comfortable, is something that makes me feel genuinely slightly tearful with happiness.

My worries about asking for help can be best explained in the following diagram:

Once I’m in this cycle it is extraordinarily difficult to break out of it. The solution to that would seem obvious: communicate with the other person what you need from them, yet that is far easier said than done. I don’t know how to do that. I don’t know how to tell someone that they are treating me like a child without sounding accusatory. Nor do I know how to ask someone for help if I am unsure how they will react. I worry that by telling someone to let me manage a situation independently, they will take that to mean that I always want to manage independently. And sometimes I want or even need someone to help me. But that doesn’t equate to wanting or even needing help all the time. I recoil at the idea of someone “having to look after [me]” as I was once told. I am not a pet or a child. I am a fully grown woman with my own thoughts, feelings and methods of coping. The times when I need help are exclusively when I am in some part of society that isn’t designed for me.

But it’s even more complicated than that. The idea of FOMO isn’t exclusive to neurotypical people. I am very aware of situations that are beyond what I can handle and so I have to miss out on. While I don’t mind missing these events for what they are, I do care about missing time spent with friends. And even more than that, I do care when friends don’t even consider me when making plans. The saying “friendship is a 2-way street” doesn’t make much sense because what does a street have to do with anything? However, having had it explained to me, I do agree that friendship requires both parties to actively work towards understanding and interacting with one another in their preferred way. And while I would never dream of holding any ill-intent towards people who want to do activities that I can’t do, what I do want, and indeed require from a friendship, is that the other person asks me if I want to do the activity. I will say no if it is something I can’t do, and I will say yes if it’s something I can do. And sure, I might need to think more carefully about it in terms of making sure I have headphones in case it is loud, sunglasses in case it is bright, a way I can leave and get home safely if needed, food to recover if I get overwhelmed, etc. But all those things do not negate the fact that I want to do things with my friends. In the same way that a neurotypical person might bring a coat in case it gets cold, I bring those things and prepare myself with a plan in case it gets too much. I am never going to be not autistic. This is my way of living and it is a way of living that I actually like. So sure, maybe me stimming in public might make you nervous or worried about me, but frankly, if you are my friend, that is something you will have to get used to. I don’t want to live my life indoors, away from everyone else and the world. I just need to approach things more carefully.

As for communication, that is something that starts and ends with trust. I have to trust you that you won’t get annoyed with me for needing adjustments, and you need to trust me that I will tell you if I need your help. While this may vary between autistic people, we generally know if we will be able to do something, and so making the space for us to feel comfortable telling you what our limits are and if we’ve reached them is imperative for our friendship. The ongoing pandemic has lessened some of these issues as we can’t go out to public events, however I am acutely aware that when this ends the world will likely go slightly bonkers in terms of gatherings. Feeling left out is an awful feeling, and feeling left out because of an integral, unchangeable part of you is even worse. The vast majority of autistic people want to socialise and yet it is much harder for us because the world is not set up in an inclusive way. Being a good friend to an autistic person means making adjustments to your plans so that they are able to be included. Just in the way that I would not go to a flour mill and bread tasting session with my coeliac friend, it do not consider it unreasonable for me to ask my friends to think about situations which might cause me harm.

So, let’s say you aren’t autistic, and you really want to go to that desert rave that you saw on Instagram. What should you do then? It’s quite simple. Here is a simple conversation that will demonstrate what to do:

You: Hey, I’m planning on going to the desert rave on Saturday. Do you want to come?

Me: No.

You: Okay cool.

I know it might look complicated but let’s break it down. You will notice that at no point did you say, “I assumed you didn’t want to come”, nor did you say, “I don’t want you to come because I will worry and it will make my night less enjoyable”. There is a lack of assumption or accusatory language putting the onus on me for making your night less enjoyable. This means that, while we reach the same conclusion of you going and me not going, there are no hurt feelings, no worry about the other person being annoyed, and no desert rave for me. I know which situations I will be able to manage and, trust me, I will still go to things that I might not be interested in but you are if it allows us to spend time together and it’s something that I can manage. However, if the choice about whether or not I go is taken out of my hands, that is when I am likely to put myself in overwhelming situations because I fear that if I don’t take every chance, you won’t invite me to things that I can manage.

Now, let’s take a look at an even better version of the conversation.

You: Hey, I’m planning on going to the desert rave on Saturday. Do you want to come?

Me: No.

You: Okay cool. I’m going to be back on Sunday. Do you want to come round in the evening to chill out?

Me: Yeah that would be really cool! You can tell me all about the desert rave!

In this version of the conversation, not only did we reach the same conclusion of who is attending the desert rave, we also made plans to hang out in a much calmer, and therefore easier situation. That way, we can both spend time together, you can go to the desert rave, I don’t have to worry about missing out on time spent with you, you get to tell me all about your experience, I feel extra included and happy you made the suggestion of us meeting, and you don’t even have to leave your home on Sunday! It’s a win-win!

For some reason, people assume that a person with ASD is going to be difficult to accommodate and/or uninterested in doing anything fun. I do not understand where this comes from. I would say all you need to do to communicate with us effectively is remember the acronym DINOSAUR.

Diversity – autistic people come in every imaginable form, and all of us will be slightly different. Just because you can communicate well with one autistic person does not mean you will be the same with another.

Independence – we are our own people. Don’t make decisions for us.

Non-literal language – don’t tell me to “run like the wind” without expecting a confused look and questions about how wind can run when it has no legs.

Open communication – many of us struggle to understand or explain our thoughts. Let us have time to work it out and don’t shut us down if we can’t do it on the first try.

Sarcasm – if you are going to be sarcastic, make it obvious. If you just use your normal voice and expressions, how are we supposed to know?

Articulate – many a meaning has been lost because we mishear the word “bed” as “dead”.

Unclear meaning – why leave things open to interpretation? Say, “please clear the table” instead of, “the table needs clearing”.

Rules – many of us need clear rules and structure to our day. Please respect that. If we tell you that we have to do something in a particular way or order, don’t make us feel bad, just follow our lead.

So now you’ve read the above text, I want to just take the time to reiterate what I think is a key issue when autistic people and non-autistic people interact: it should not only be on the autistic person to make the adjustments to allow them to join in. If you are non-autistic, you already have the advantage in the world, and so please do what you can to make it easier for us to exist. They say that “life isn’t fair”, but that doesn’t mean we shouldn’t work towards making it fairer. I am at my most funny, most witty, and most interesting when I am in a situation that isn’t causing me actual pain and draining all my energy to stay calm inside. Autistic people, you are not a burden. Anyone who makes you feel that way is wrong. Just because you experience the world differently does not mean you experience it incorrectly. When I found out that my friend is coeliac I did not decide to make plans with my other gluten-tolerant friends to eat loads of bread and say, “we would have invited you but you wouldn’t have been able to do it”. Instead, I bought some gluten free flour and am going to attempt to make some gluten free recipes so that when I am able to see her in person, she can come over with my other friends and we can all enjoy a meal that everyone can eat. Making the world slightly more accessible for someone else does not make it less accessible for you. Being considerate of others is a cornerstone of human kindness and considering the abject hatred of minorities in so many places around the world, small acts of genuine thought and compassion are needed in order for people to retain any semblance of hope that one day, it will get better. I remember every single time I saw someone make a conscious decision to accommodate me without taking away my autonomy, and those are the things that I think about when I hear the stories of autistic people being crushed by the police because they don’t understand the condition. When Sia’s outright offensive and dangerous portrayal of our condition was nominated for 2 golden globes, it was my unwaveringly supportive friends that I thought of. When a recent incident at my university caused many of the autistic students, myself included, to experience feelings of anger, distress and utter powerlessness, it was the people who are not just passive allies but are actively trying to raise awareness and help our community that I turned to. Being autistic does not make you less human. We are not lacking pieces of an otherwise complete person. We deserve basic understanding and respect about what we need in order to cope. Not because we are autistic, but because we are people.

Sarah