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.

The Pros and Cons of Winter

I love every season but by the end of it, I’m always ready for the next one. But, as a neurodivergent person with multiple physical and mental health conditions, different seasons present both different excitements and different challenges. With winter around the corner, I thought I’d share some of the good things and some of the difficult things, along with how I’m learning to cope with the difficult things. This list is, of course, specific to me and my location so it’s not going to match everyone’s experience but hopefully they’ll be something useful to you in here, even if your experience of the season isn’t the same as mine.


PROS:

  • The sensory experience – I think winter is my favourite season as a sensory experience. I love the crispness of the air; I love looking at all of the beautiful lights and pretty Christmas decorations; I love the smells associated with winter and Christmas (in my house, at least), like satsumas, the meals we generally only have in winter, the super sweet smells of sugary puddings and sweets, Christmas trees, and so on; the sight, sound, smell, and warmth of a fire. There are, of course, downsides, like busy shops and blaring Christmas carols but, over the years, I’ve gotten pretty good at avoiding those things.
  • Fires in the evening – My Mum and I both love having a fire to end the day, like a little treat for ourselves. As I said above, I love the sensory experience and we both find it a really good destresser. One of our favourite things about this house is the gorgeous fireplace and every year, we both get really excited about having fires again.
  • Potential for snow – I love snow. It makes me so happy: watching it fall, standing in it as it falls, how beautiful it looks first thing before anyone has disturbed it, the way it crunches when you walk through it, watching the cats try to make sense of it, and so on. And because we get it so rarely, it’s always special. No, it’s not guaranteed but I still enjoy being excited about the possibility.
  • Christmas – I struggled with Christmas in my late teens and early twenties, which I think was largely to do with how much I was struggling with my mental health and ASD. But as I’ve gained a greater understanding of the long-term issues I deal with and talked about them with my family, Christmas has become much more relaxed and enjoyable. They’ve been fantastic at working with me so that I can do the parts that I really enjoy and not do the parts that I struggle with. It’s become such a better holiday since then. I see friends and family (COVID depending, obviously), spend warm and relaxed evenings with my favourite people, get a Christmas tree and decorate it with the decorations my family have been collecting for years, not feel guilty (or at least feel less guilty) about doing things I don’t usually feel like I have time for (like reading books or watching movies all day), exchange presents, and so on. We’ve found a way to make it a really special, enjoyable time.
  • The cats spend more time inside – With the colder weather, my cats (whose presence I find very soothing) spend most of the day inside when, in the summer, they spend almost all of their time outside. So having them around more is lovely. They’re usually in the living room with me, curled up on the cat tree or sprawled across the furniture, or, even better, snuggled up with me on the sofa. They’re gorgeous and it’s one of my favourite things about winter.

CONS:

  • The cold – I hate being cold. You can usually find me in a big jumper or wrapped in a blanket. I’m often cold in the summer so it’s even harder to stay warm in the winter. I’m super grateful for the heating, the fire, my electric blanket, and so on.
  • Managing temperature – I really struggle with temperature regulation. I get hot or cold really quickly but then it can take hours to return to normal (and then it can suddenly jump to the other extreme). And going from really cold outside to really warm inside can just make that even more tricky. Layering helps but only to a certain extent. I have been doing some research and there are brands that make clothes to help with this so I really want to investigate these as I can afford it. (x)
  • Different fabrics – Clothes for cold weather can cause sensory difficulties. They can be bulky, heavy, itchy, and so on, as well as making me feel claustrophobic and trapped in my own clothes, which can cause a lot of anxiety. As I said above, I tend to do a lot of layering with the clothes I’m comfortable in but that isn’t a fix all. I’m still looking for a coat that doesn’t stress me out and I really hate wearing gloves. But I’m still trying to find the best option.
  • Ice – I might love snow but the amount of ice around in winter can be pretty perilous. And between my less than perfect balance and my chronic pain making me somewhat unstable, I do worry that every step could disappear underneath me and land me on cold, hard pavements with painful consequences. Given how bad my pain has been recently, a fall could be very painful and that pain could linger for quite a while.
  • More difficult to meet friends – Especially with COVID in the mix, I find it much harder to meet up and hang out with my friends in the colder months. It’s so much easier (and cheaper) when we can hang out in a park or on the beach or something like that, plus it feels safer considering the times we’re currently living in. But finding somewhere to hang out inside poses certain challenges, like COVID anxiety, meeting everyone’s dietary needs, the costs of hanging out in a cafe for example for an extended period, and so on. It’s just that bit more complicated and harder to organise and I find that plans often get pushed back again and again. So I often end up seeing my friends less in winter which makes me sad.
  • Feeling sealed inside – In an attempt to keep the heat in and save money on the heating, we keep the windows and doors closed as much as we can. And while that does the job we’re trying to do, the side effect is that I often feel a bit claustrophobic, like I’m sealed into my house with only the same air circulating (obviously this isn’t scientifically true or I would’ve suffocated long ago). And that feeling really stresses me out. Mum has taken to leaving the windows cracked open at night to get some fresh air in, which does help, but the feeling does still start to creep in by the end of the day. So I’m still working on that.
  • Less light, more darkness – While I like how cozy the house feels when it gets dark early, I do sometimes find it stressful; it feels like the day is actually shorter and I have less time to get done everything I need to do. Plus, autistic individuals are often low in Vitamin D so with fewer daylight hours than usual, that can become a bigger problem. I’m already low in Vitamin D so I take a supplement prescribed by my doctor to avoid a serious deficiency that could cause health problems.

I don’t know if this is helpful but when I sat down to do some research for this post – to see what other autistic/neurodivergent individuals find good and difficult about winter – I couldn’t find anything for autistic adults. Everything I found was directed at parents helping their children to adjust to the change in season but that doesn’t just go away as we grow up, although the challenges might change. So, since I couldn’t find a single post or article relating to adults, I felt it was all the more important to write something on the subject. So I hope this has been helpful in some way. Let me know what you would include on your list or how you manage the seasonal change!