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.

A Moment of Modafinil

TW: Mentions of suicidal thoughts. 

In hindsight, I’m not sure this was the best moment to try out a medication that’s supposed to help you stay awake, given that it was going up against jet lag, lack of sleep, exhaustion, and the general sleepiness caused by my antidepressants. But I was desperate to feel something other than drowsy and trying out the Modafinil was the only option to hand. So, for a week, I took it twice daily – per the instructions of my prescription – and I thought I’d describe the experience, just in case it might be useful to somebody.


For most of the week, I took the 8am pill and then went straight back to sleep, only waking up again to take the 12pm pill. I was just so tired; I couldn’t wake up, no matter how hard I tried. I did manage to get up earlier on a couple of the days but regardless I only felt actually awake for a couple of hours before I started feeling sleepy again. I was constantly exhausted and fell asleep, sometimes multiple times in a day, regardless of how hard I tried to stay awake. Red Bull didn’t seem to help much. The first night, I never went to sleep at all – despite how tired I was – but after that it was all I could do to stay awake for more than a couple of hours at a time.

I haven’t had much appetite since taking the ADHD medications but I was suddenly very nauseous again with absolutely no interest in food. I have to say, it’s an improvement on the medications that make my want to eat constantly but it’s still not pleasant.

My mental health took a hit too. I was very anxious but there were multiple external factors to consider so I tried to tough it out but it just kept getting worse. Within a few days, I was feeling incredibly overwhelmed and fragile and then, on top of that, I started to feel more and more depressed. By the end of the week, I was having suicidal thoughts again. I stopped taking them at that point. It said that, if it causes depression (or perhaps made my existing depression worse, I don’t know), to stop and talk to a doctor and maybe I should’ve waited to stop until I could talk to my doctor but it was the long weekend and I just couldn’t face feeling like that any longer. So I stopped taking them and sent my doctor an email about it. I’m hoping for a proper appointment with him soon.


I was only taking them for a week but they didn’t seem to have any positive affect at all; I was still employing extra strategies etc to try and stay awake, something I would’ve hoped I wouldn’t have to do with the Modafinil. Having said that, I was only taking 100mg and I’ve read that most people need to take 200mg to feel the effects but I’m worried that taking a higher dose would make my depression even worse and that’s not something I can be okay with.

For several days after, I was sleeping long nights and most of the day; I was probably sleeping somewhere between sixteen and eighteen hours out of every twenty four. I’ve emerged from that at this point but I’m still incredibly sleepy. The quest for a non-drowsy life continues.

World Autism Awareness Day – Inclusive Quality Education For All

Given that the theme for this day was only announced by the UN a week or so ago, this isn’t as prepared as I would’ve liked; I would’ve liked more time to work on it, to organise my thoughts on the topic. ‘Cause this week has just been chaos, both in reality and emotionally: I had to leave my cats at a cattery, pack for my trip to the US, fly to Boston, go to a concert there, and then fly to Nashville, where I’ve been super busy. And all of that has been very stressful. So it’s not ideal but I’ve done the best I could with the time and emotional energy I’ve had.


Given that the theme set by the UN this year is ‘inclusive quality education for all,’ I thought I’d write a bit about my experience in education as a young autistic woman. I wasn’t diagnosed until I was twenty so, while my years in school were obviously affected by my being autistic, we didn’t know that that was the cause.

During primary and secondary school, things were pretty okay. I loved learning so that was never the hard part for me. I was shy – painfully so (P.E. and drama classes were cause for weekly distress) – and I was exhausted by being in school but otherwise I think it was fairly normal. For the most part, I was a high achiever: I learned to read and write well very quickly; I was top of the class in most subjects (some of which I tried hard in but some of which I seemed naturally good at); I was in my school’s ‘gifted and talented’ stream for multiple subjects. I was left to myself a bit, I think; I guess there’s a logic to the idea that you don’t need to help a smart kid be smart but then, in the long run, said smart kid doesn’t learn how to learn, if that makes sense. I picked things up very quickly so no one ever really taught me how to study; once I got to the harder stuff, I started to struggle.

Things were fine until sixth form college, when that problem really kicked in. But still, I pushed through: I worked harder, I exhausted myself further. But I thought there was something wrong with me. I thought I was stupid, that I was missing something; it never occurred to me that something like ASD meant my brain processed information differently, that the combination of the undiagnosed ASD and my all-consuming attempts to keep up were having a detrimental affect on my physical and mental health, or that I wasn’t being supported as I should’ve been. I had individual teachers who were kind and understanding but the institution itself offered no support at all. By the time I was taking my A Levels, I was so burned out and worn down that I was right on the edge of a breakdown. I ended up taking a gap year between the end of sixth form and the beginning of the university as I tried to get a handle on my spiralling mental health.

I went to the same university for both my BA and my MA (although with a few years in between), mostly because it allowed me to pursue my greatest special interest (songwriting) and study it in depth. I was diagnosed with several mental health problems during my first year of the BA and then ASD between the first and second year, which was when my university became more open to supporting me (it is worth pointing out however that I had to fight for almost every step because they simply didn’t understand why I needed what I told them I needed). They had what was called a Student Support Agreement that was supposed to be sent to all of my tutors before classes started so that they knew the difficulties I struggled with and what sort of accommodations I might need but I’d often introduce myself to a tutor and they’d have no idea what I was talking about.

In general, most of my tutors tried to understand; they were as accommodating and supportive as the university would allow them to be. They wanted to know; they wanted to understand; they wanted to make things easier for me (obviously not easier than it was for everyone else but to put me on the same level as my peers so I wasn’t disadvantaged). And while, I don’t mind – and even at times enjoy – educating others on Autism, it took a lot of energy to have those conversations at the beginning of every semester, sometimes multiple times. (It’s also worth pointing out that having those conversations can be really enjoyable when the person wants to learn but it can be a totally different story when you’re having those conversation out of necessity and the person isn’t really engaged.) It wasn’t until the last semester of my Masters that I worked with a tutor who was neurodivergent herself and it was a completely new way of experiencing education; feeling so understood and accommodated was amazing and that was definitely reflected in my work.

But while the individuals were open, for the most part, I felt like the institution wasn’t particularly interested in my experience as a neurodivergent student. It’s a small school so there were never that many of us (or there weren’t when I last spoke to them about it) because there weren’t that many of us in general and I don’t think they saw us as worth investing in (as in, it wasn’t financially worthwhile to educate all of their tutors on Autism and other neurodevelopmental conditions for just a handful of students) despite the benefits it could have for all of the students and for the tutors themselves.

Having said that, when I started the Masters I was introduced to the person brought in to support students with Autism and ADHD. I was feeling really optimistic about going back to uni – that progress was being made – but I hadn’t even known her a month when her actions triggered the biggest meltdown I’d had to date in the middle of a busy London train station, which was a traumatic experience. After that, I never heard from her again and found out from someone else that she’d transferred me back to Student Services without her ever saying anything to me. And all of that was with her training and experience. So I didn’t have a lot of faith in their efforts after that. I’m still talking to them though and I hope that I can still help them make the university experience better for neurodivergent students. They could – and they should – be doing more. With so many neurodivergent students dropping out of university, more needs to be done and I think the starting point is teaching the teachers.

I think it’s worth pointing out that I am in a fairly privileged position: I’m from a white, middle class family with a good support system and I went to good schools throughout my time in education. I was also able to go to university and had support from home that allowed me to do that in the way that was best for me. I was (and am) very lucky. But despite all of that, education has been an incredibly distressing experience.


Ultimately, everyone in education needs to know more about Autism and other neurodevelopmental conditions; knowledge and understanding is the only way that the education experience is going to get better for neurodivergent students. All of these institutions have been built on ableist foundations and I don’t have the answers on how to fix that but I do know that, without the knowledge, nothing will ever change.