Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.

A Holiday Bubble

From the age of about two years old, I’ve been going to a little town in Norfolk almost every year on holiday. While I was in school, we – me, my parents, and our dog – would go during the October half term but in recent years, we’ve been going in the early summer, before the schools break up. We stay in a caravan less than a ten-minute walk from a stunning sandy beach and I absolutely love it.

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Some people find it strange that we always go back to the same place but as far as I can tell, there are two basic types of holidays: going to explore and going to relax. Both have their pros and cons. This is definitely a relaxation holiday. It’s familiar and calm and beautiful. It’s a bubble away from reality where I can just be, in a way I can’t at home. And, of course, familiarity and Autism go together like fish and chips. We also ate a lot of fish and chips…

I’ve been back from Norfolk a few days and I just really wanted to write about it. After having had so much change with the house move, the changing of medications, and the decision to keep my cat’s kittens, it was really nice to be somewhere so familiar and safe. And as much as I love the cats, I really enjoyed having some dedicated dog time with Lucky. Because he’s now so arthritic, we have to be careful to not over walk him (his enthusiasm far exceeds his physical ability so he’s not much help there) but we manage a couple of trips to the beach, which he loved. He can’t really run anymore but there was a fair amount of skipping, one sure-fire way to know he’s enjoying himself. It’s very cute.

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The beaches in Norfolk are just beautiful. The closest beach, the one we jokingly call ‘our beach,’ is particularly close to my heart. Every year, I step onto that beach and everything just clicks into place. It’s subtle but I suddenly feel like my head’s a little clearer, like I can breathe more easily. Something inside me settles. It’s like I leave a little piece of myself there, that I miss all year round, and then, when I get back, it’s an overwhelming relief. I’ve spent some glorious evenings on that beach.

It was ridiculously hot all week so I spent a lot of time inside with all the windows and doors open. I’m really not good with heat. It’s something I’ve heard from quite a few other people with Autism; I wouldn’t be surprised if there’s a link, given the hypersensitivity that often comes as part of being autistic. Anyway. It gave me the opportunity to do a lot of writing and catch up a bit with my diary (if you’ve read this post, you’ll know that my writing can be quite compulsive). That felt really good. I also rewatched some of my favourite films and played chess. The latter is something I haven’t had the concentration to do for months so that felt like a victory in itself, much more exciting than actually winning at chess.

Being there doesn’t eradicate my anxiety entirely but it does a pretty good job of dampening it. Sometimes anxiety feels like this constant vibration that I can’t stop, can’t take a break from. But in Norfolk I can. I still get anxious about specific things but that relentless vibration momentarily ceases. And that’s such a relief.

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Travelling As An Autistic Person

Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.

PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.

SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.

CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.

WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.

PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.

BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.

PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.

BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.

As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!