Another Autistic Summer

Summer as an autistic person can be really difficult. There are a lot of changes and some of them can feel quite extreme, quite overwhelming: the heat, the humidity, the general increase of people out and about… It can feel like a lot to deal with. I don’t pretend to know everything – not by any means – but I thought I’d share some of my thoughts and strategies for dealing with some of the big summer stresses…


SENSORY ISSUES

  1. Too bright – While bright skies are a sensory issue year-round, the summer months are hard in their own way: the light feels like it has a different intensity, it reflects back at me differently, it’s a different colour, it’s present for more hours of the day… It’s hard work on my eyes. I like working in my living room because it has white curtains, allowing for some light but without the glare (although anti-glare glasses are a good option to explore if you’re struggling inside). Outside, sunglasses are the obvious protective measure, but polarised sunglasses are better if you can get them.
  2. Too noisy – I find noisy environments very stressful and my anxiety only increases the longer I am in that noisy environment. The sensory overload is just too much and I become less and less able to function. And with more people around in the summer, the noisier it tends to be and therefore, the more stressed out I can get. I’ve found that the most effective coping mechanism is noise-cancelling headphones but playing music or audiobooks/podcasts through headphones and earplugs (if you find them helpful, you can have ones specially made – relatively inexpensively – to fit your ears, making them more effective) also work.
  3. Too hot – I’ve always found the heat of the summer very difficult and have been using open windows, fans, damp flannels and so on for years. But over the years, I’ve found the noise that regular fans make more and more anxiety-provoking so I finally invested in a Dyson silent fan. It was expensive (note: they are less expensive outside the summer months) but it was one of the best investments I ever made in managing my day to day health; it’s the most effective fan I’ve ever had and I use it year round. It’s more than made up for the expense. It’s also important to remember to drink as much water as you can – this is especially important for those with hEDS as well as dehydration makes the symptoms worse. Carrying a water bottle with you, having an app that reminds you to drink regularly, and so on can help you to remember and help you to build it into your routine.
  4. Different clothes – Following on from problems with heat, that often demands an entirely different wardrobe, which can be a less than comfortable change, literally and figuratively. It can involve different, uncomfortable fabrics or less fabric altogether, which can result in chafing or just feeling really exposed when people look at you. Finding specific fabrics – like cotton or linen – that aren’t irritating can be helpful. Layering, so that you can stay covered up as much as you need to to be comfortable, with thin fabrics can allow you to balance the need to keep cool and the need to be covered. And if you find a piece of clothing that really works for you, I recommend getting several to avoid the repeated stress of trying to find comfortable clothes.
  5. Crowds – As we know, in the summer, there are more people out and about and the world just feels more crowded. Public places are busier and that can be really stressful. Especially with the anxiety around COVID-19, crowds and crowded places can feel overwhelming which can cause anxiety attacks or meltdowns. The obvious advice is to avoid busy places at peak times but we all know that that’s not always possible. We all have our own strategies for managing anxiety but the ones I find most helpful in this situation are having someone I trust with me, giving myself plenty of time so that I don’t have that additional pressure, and I’ve also found the sunflower lanyard useful in certain places.

CHANGES IN ROUTINE

  1. Day to day changes – For some of us, our routines change regularly with the seasons but that doesn’t make it any less stressful. As someone who finds change very stressful, I try to make these changes slowly so that I have time to adjust and don’t end up feeling overwhelmed. It requires planning but it can really reduce anxiety.
  2. Loss of structure – While this isn’t, of course, applicable to everyone, the summer is often when people have time off from their usual occupation or go away on holiday. And with these things, we often find ourselves without structure. A lack of externally imposed structure can lead to a lot of aimlessness and/or anxiety so learning to build our own structures is a good skill; you don’t have to fill your schedule from opening your eyes in the morning to closing them at night but giving yourself things to do and think about (beyond their inherent value) keeps you moving and feeling and living. I do struggle with this but I’ve found it really helpful to have my family prompt me when I get stuck in a rut.
  3. Seeing less of some people and more of others – As I talked about in my BPD Awareness Month post, I get very anxious about my relationships and fearful that I’ll mess them up or that my issues will be too much for people. So a big change in my routine of seeing friends makes me very anxious. Living with such limited energy, socialising is something I find stressful because it requires so much energy, even though I enjoy that actual spending time with people. I’m lucky that my good friends are really lovely and really understanding but I still worry. I haven’t really figured out a good way of dealing with this anxiety but I do try to be as honest as I can with my friends and family so at least we all always know what the situation is.

ANXIETY

  1. Trying to do too much – When I have free time, I often end up struggling with a lot of anxiety, usually about whether or not I’m using the time in the best way (partly due to the fear that if I say no to too many things, people will think I don’t care and eventually want nothing to do with me). This can result in trying to do too much, more than my health – my sensory issues, my energy levels, and so on – really allow me to, which can lead to meltdowns or feelings of burn out. Over the years, I have gotten better at judging what I can and can’t manage and what’s really important to me but I still find it difficult and stressful and sometimes upsetting. I think it comes down to practice and self-compassion but that’s easier said than done. (I know that I also have issues about being as productive as possible but I also have a lot of anxiety about time running out in general, in multiple aspects of my life, which means I often end up pushing myself too hard. But I can’t say I know what to do about those issues at this moment in time.)
  2. The stress of holidays – While there are fun things about holidays and travelling, there are a lot of really stressful aspects, from the actual travel like flying to all the new-ness to being cut off from all of the normal coping mechanisms. There’s also a weird expectation to have fun on holiday that can create added pressure. Personally, I’ve found that the absolute best thing I can do in these situations is just talk to whoever I’m with and try to be realistic about what I can manage, although it’s still a learning curve. It doesn’t always feel like enough but I’m still learning to adjust my expectations to fit with my physical ability; I struggle with feeling guilty about ‘wasting opportunities’ too but, as I said, learning to let that go is a process and requires practice and self-compassion.
  3. Anxiety around what comes next – This is the first year where I haven’t been in education (or had education on the very near horizon) so I can only really speak to the experience of being in education and how it can, at times, feel like an endless hamster wheel. Every year, there’s the freedom of the summer holidays but there’s anxiety too. I always had this anxiety in the back of my mind about what the next year would bring, having finally gotten comfortable in the patterns of the year just gone. After all this time and all these years, the new academic year still stressed me out to an almost unbearable level so I don’t really know how we, as (disabled/neurodivergent/struggling) students, are supposed to manage that stress. I think a big part of it is on the schools and how they handle the roll out of the new year and talking to the school about it can help but, personally, I haven’t had much experience with that making things better. But I have to hope that they will eventually improve.

I know it’s been a while since my last post. A lot has happened and I’ve been having a really, really hard time. Some of that is stuff that I would like to write about at some point but I still feel like I’m stuck in the middle of it. Plus, I’ve been really struggling to write – with even being able to string a sentence together – which hasn’t been helping anything. Things still aren’t great – which may be the biggest understatement of my life – but I miss writing and I miss writing for this blog so I’m trying to push through. I wrote most of this a while ago and, given how hot it’s been recently, I wanted to get it up while it might still be helpful. I hope it is.

Plans For My Empty Semester

Because of the way my course is organised for part time students, I now have a semester without classes while the full time students do their third semester. I’ve been looking forward to this, not just to take a bit of a break but to work on new music with the skills I’ve learned, return to hobbies I haven’t had the time or energy for while doing the course, and to just generally catch up with things, be productive, and get some long awaited projects done. Of course, everything changed with the pandemic and subsequent lockdown.

So my list is different now, depending on what is possible and what isn’t. I’d started collating this list – this post – before lockdown was announced and I’ve been reluctant to simply scrap it all just because it no longer fits with the future I’d expected. So I thought I’d post it anyway, just divided into different categories, for posterities sake if nothing else. I guess I just want to remember what I’d thought this summer would be like versus what it ends up being like.

Impossible:

  • Get back to swimming regularly – That’s obviously not possible as all the gyms are closed.
  • Mental Health Awareness Week Assemblies – For Mental Health Awareness Week, I was supposed to go back to my old secondary school and do a series of assemblies, talking about mental health, my experiences with it, and play some songs. I was really looking forward to it but then we went into lockdown and schools had closed long before Mental Health Awareness Week.
  • London gigs – I was scheduled to play a couple of shows in London but they were cancelled due to lockdown. Hopefully they’ll happen when it’s safe again.
  • Concerts – I was due to see several shows over the summer including Taylor Swift at Hyde Park and The Shires in London and Brighton but they’ve all been rescheduled or cancelled. I understand it, of course, but I’m still gutted because I was really looking forward to those shows.
  • See Waitress The Musical again – I was hoping to see Waitress at least one more time before it closed but it’s run ended during lockdown and they’ve announced that it will not be returning. I’m so, so sad that I’ll never get to see it again. But I’m grateful that I got to see it as many times as I did and that the last time was Sara Bareilles’ last show. That made it extra special.
  • Get caught up with my photo albums – I’ve wanted to get my photo albums up to date for months but there’s a problem with the external drive that holds my Photos library and since all the shops are closed, including the computer repair shop I go to, I can’t get it fixed until they reopen and it’s safe to go there. And therefore I can’t catch up with my albums yet.

Difficult or Different:

  • Music Theory lessons – I had a plan to improve my knowledge and understanding of music theory during this time, to prepare myself for the next semester but now, my teacher and I can’t meet or even travel to meet for lesson. In theory (pun intended), we can still have lessons using Zoom or FaceTime but it’s definitely more difficult when we can’t sit side by side at the piano, when I can’t lean over to watch his hands, and when he can’t adjust my hands on the keys, and so on. I’m sure we can find a way but it’s definitely more complicated than it was before.
  • Have as many cowriting sessions as possible – I really wanted to spend as much time as possible writing with my friends and course mates. They’re all so amazing and unique. Of course, we can still write using Zoom and FaceTime but it’s not a creative process that I’m super comfortable or productive in. I’ve been doing some but I find them exhausting and just not as much fun as I usually find collaborating.
  • Catch up with my friends – To be fair, I have been catching up with friends but it’s obviously always over Zoom or FaceTime. We can talk and I’m grateful for that but we can’t hang out or hang out in groups and I miss that. I miss just chilling out together, doing things companionably, and my god, I miss hugging them.
  • Sort out my bedroom – This is another project I’ve wanted to do for so long and while there are still aspects I can do (and still plan to do), there are a lot I can’t, which is very frustrating.
  • Create my studio space – Again, this requires changes that aren’t possible right now because having aesthetic building work done obviously doesn’t come under the lockdown advice but there are things I can do and have started to do. Despite the difficulties, I’m creating a space to work – some of which will be permanent and some which are makeshift and I’ll change later when it’s possible – so it’s a start.
  • Create a space to make YouTube content – This project I have yet to figure out and I’m not sure if it’s even possible without certain changes in my room, changes that won’t be possible until life is more normal again. But I’m still turning it over in my head, how and where to create an aesthetically pleasing space to make videos from. So we’ll just have to wait and say when it comes to this one.

Still Possible:

I feel like it’s important to add an extra note to this one because, while all of these plans and activities are physically possible, they’re not necessarily possible. I’ve been seriously struggling with my mental health, especially with my anxiety and depression, and my creativity has taken a serious hit too. So, while I do want to do these things and they are within the rules of what’s allowed and technically possible, I don’t know if I’m going to be able to achieve them, or achieve as many of them as I would like.

  • Write new songs/work on old songs – I’ve been trying so hard at this and I’ve managed some but with my creative and concentration struggles, it takes a lot of hard work and is really emotionally draining. It’s amazing when I can break through the fog though.
  • Sort through my clothes – This is something I’ve started to do but it’s tricky because there’s nowhere to take the clothes I want to pass on. It feels good to be clearing out some of my stuff and creating some space though.
  • Catch up with my diary – I feel like I’m in a perpetual state of ‘catching up with my diary’ but I’d hoped to use this time with limited distractions to really get caught up. But with my concentration in such shambles, it seems to be taking even longer than usual, which is endlessly frustrating. I have to keep going though. My OCD doesn’t take a break just because there’s a pandemic.
  • Start learning the Kalimba – I bought a Kalimba and it was going to be a present to myself for finishing my second semester assessment. I love the sound and I really want to learn how to play but, as I’ve already said, my concentration and motivation haven’t been great so I’m struggling to apply myself to it.
  • See a meteor shower – I have technically done this one already but it wasn’t a very impressive show so I’m looking forward to the big one, the Perseids meteor shower, in August.
  • Update my songwriting book – My songs are all over the place (in various notebooks, my laptop, different hard drives, and random pieces of paper) so I’d really love to compile them all into one book, something I’ve just started to do.
  • Watch some of the things on my To Watch list – I’ve been trying with this one but I’m finding it quite difficult to watch new things. It’s like there isn’t enough space in my brain and I don’t have enough spare emotion to invest in new characters and a new world, etc. Does that makes sense? I’m going to keep trying though. I think it’s going to be a case of just hoping that the trying and a moment of feeling okay will coincide.
  • Improve my guitar skills – I feel like my guitar skills have come to a bit of a halt recently and I really want to get out of that rut and get better. I don’t feel the need to be the best guitarist in the world but I’d love to be proud of what I’m playing when I play solo, rather than feeling like I’m playing a really simple part just to accompany myself.
  • Start coming up with ideas for my Masters final project – It’s not for a while yet but I want to have some potential ideas for my final project so that I have time to think them over and make sure I choose something that’s a good fit, for the exam criteria but also for me as an artist. It will just make me feel more prepared and more inspired when the time to start arrives.
  • Improve my piano skills – Just as with my guitar playing, I want to get better at playing the piano. I love playing the piano but I still feel like a really basic player. I want to be able to play more interesting chords and progressions, with more interesting and unique rhythms and melodies.
  • Read some books from my To Read list – During my course, I don’t tend to have time to read anything other than course related material so I was really excited to read some different stuff, especially fiction. But as with watching new films and TV shows, it just feels too hard to learn a new world and new characters and concentrate enough to get through a book.
  • Take some classes on Skillshare – I love learning. I remember being a kid and someone asked me what I wanted to do when I left education and I was completely mystified by the idea that you’d ever want to leave education, ever want to stop learning (obviously you don’t stop learning things when you leave education but I was very little and that’s what I understood it to mean). I never want to stop learning things and I was excited about having a solid chunk of time where I could focus on learning things outside the sphere of my Masters, as much as I love my course. Having said that, it’s hard to take in new information when I’m struggling with my concentration.

Uncertain:

  • Shooting a music video – It was during this time that Richard and I had planned to shoot a music video and now we don’t know when we’re going to be able to do it, given how far apart we are and the infection risk of travelling there. In theory, we’d be able to do it socially distanced so if we can figure out how to get the two of us there, then we might still be able to create the video I’d always imagined for this song.
  • EP gig – I really wanted to throw an event (a gig and a party rolled into one, I guess) to celebrate the EP and all we achieved with it but I don’t know when gigs are going to be allowed again or, more accurately, when they’re going to be safe again so I’m not whether this plan is possible. I don’t want to do it until it’s completely safe but I also don’t want to wait until months after the EP is complete to have this event. So I’m not sure where we stand with this plan.

I truly have no idea what the next few months will look like (especially with the government making a mess of everything, especially the lockdown) so I don’t know how many of these things I’ll be able to accomplish. Each day is unknown and that’s both terrifying and exhausting. I think that, whether you’re a person with mental health problems or not, just getting through this period of time (and managing your health – physical, mental, and emotional) is achievement enough. So I guess, when the next semester starts, I’ll look back at this post and see what I managed to do while keeping that in mind.