More Tips For Travelling As An Autistic Person

Back in 2018, I wrote a post about travelling as an autistic person and my personal tips for making it smoother and less stressful and anxiety-inducing. In that post, I included:

  • Plan ahead
  • Speak to a travel agent
  • Choose your accommodation carefully
  • Write a list of everything you’ll need and have someone check it
  • Pack an emergency kit in your carry on baggage
  • Bring your own food
  • Prepare specifically for the flight
  • Build in time out and don’t feel guilty for it

I still stand by all of these strategies but since then, having travelled more and gained more experience (apart from the lockdown and pandemic times – the latter of which we are arguably still in but obviously travel is now more possible for many, many people), I have more thoughts that I thought might be helpful to share.


FIND A GOOD TRAVEL AGENT – I wrote about talking to a travel agent last time but I wanted to share my personal experience with our travel agent, a guy we first met when we travelled to the US in 2016. Since then, we’ve booked every trip we’ve taken with his help – we go to him for everything – and developed a solid relationship. It really helps, I think, that he has a working knowledge and understanding of Autism so, even though he didn’t know me and my struggles personally, he picked up what I could and couldn’t handle very quickly, which has made things so much smoother than they might’ve been otherwise. He always goes above and beyond for us, something I would attribute to the working relationship we’ve built with him, and I so, so appreciate it.

TAKE INSPIRATION FROM YOUR MOST EXTREME NEEDS WHEN YOU PACK – It’s easy to optimistically assume that you’ll have a normal day every day you’re away but that’s not only unlikely because our minds and bodies don’t cooperate just because we want them to but also because the stress and anxiety of travelling and being in a new, unfamiliar place can do a number on us. I always find being away from home for more than a few days incredibly stressful, which can screw up my energy, my pain, my anxiety, my sensory issues… So packing with bad days in mind is probably a good idea; I’ve started carrying my heat pad (for pain), my joint supports (which I don’t always need but, of course, always seem to need when I’ve left them at home), a number of different fidget toys, medication for migraines (not a super common occurrence but debilitating when they do happen) and so on…

LEARN SOME BASIC PHRASES – If you’re planning to go somewhere where the language is different to that of your home country, it’s definitely worth learning at least a few common phrases. I know this is often considered to be common courtesy and I don’t disagree but when you have a lot of health stuff to deal with or get really overwhelmed in new environments, it’s not that simple; with all of your other preparations, it can just slip down the priority list and then off the list altogether. I recently went to Germany and between the ridiculously long hours trying to get everything done before I left and then the total overwhelm when I got there, I somehow didn’t clock that I didn’t speak any German until a couple of days in. How bizarre is that?! Then, of course, I panicked and did my best to speed learn words and phrases like, “Yes, please,” “No, thank you,” “English please,” “Excuse me,” and “I’m sorry.” Fortunately for me, German isn’t completely alien and the spellings and pronunciations – at least for the simple stuff – are relatively close, or at least they felt that way in my brain. So I picked those up easily, which was a relief. I think that having some language can really reduce your anxiety because you don’t feel so lost (and potentially helpless) and it makes moving around and engaging with where you are a little easier.

ASSISTANCE SERVICES AT THE AIRPORT – I’ve now done multiple trips through airports where we’ve arranged for the assistance services to help us out. So now I get wheeled (in a wheelchair or one of those electric buggies) from check out to not just the gate but down the gangplank to the actual plane. Because I struggle with standing and walking for extended periods of time, this has not only reduced both my pain and fatigue, it’s also reduced my anxiety about the time it takes and the recovery time I’ll need later. Apart from a few mix ups (uncommon but it has happened), they’ve been super efficient and very nice. I’ve found a couple of them to be a bit intimidating but I think that’s just because they’re utterly focussed on the job (and the next one and the next one); no one has ever been anything but polite and even funny. On my recent trip to Germany, one of the women was really, really nice and we had a good laugh despite the language hurdles to navigate. The one confusion that I’ve experienced is that, at some airports (and always in the US), they operate on a tip system but no one’s ever told us that one way or the other. Maybe it’s the straightforward, autistic approach to things but, to me, a service provided by the airport implies that the airport pays them for the work they’re doing but clearly not. So that did take me by surprise and I haven’t always been prepared for that, financially or emotionally.

IF YOU’RE TRAVELLING FOR A SPECIFIC EVENT, FAMILIARISE YOURSELF WITH WHERE YOU ARE AND WHERE YOU NEED TO BE – If you’re travelling for an event like a wedding or a birthday, it’s well worth doing things like checking out and practising the route (or routes you’ll have to travel) so that you know how to get where you’re going and how long it will take. You don’t want to be stressing about being late or getting lost on the important day itself. And if you have to let go of everything else just to make sure that you can attend and engage with the event you’re there for, then that’s what you need to do; it’s hard not to feel guilty or upset about not ‘taking advantage’ of the opportunities that travelling has presented you with but most likely, if you’ve travelled for a particular event, it’s really important to you and has to be your priority. Chances are that you’ll feel better for putting it first.

HYDRATE – If I have learned anything over the last few years, it is how important it is to stay hydrated. We all know this, of course – we’re told often enough that none of us are drinking enough water – but autistic individuals often struggle with it specifically due to problems with our interoception (plus, thirst signals are generally weaker than other internal signals, making them harder to recognise). Being dehydrated can make everything so much harder, causing headaches and exhaustion to name a few, and when you’re away in an unfamiliar place, that’s the last thing you want.

IF YOU HAVE TO GO HOME EARLY, THAT’S OKAY – Sometimes shit happens and plans have to change. And that has to be okay. Whether it’s your physical health, your mental health, something going on at home, sometimes you just have to figure out how to accept the need for change and go home. Sometimes it’s a case of choosing the ‘lesser of two evils’ – staying is hard but so is leaving – and making the choice that feels the most right, even if both of them feel wrong to a certain extent. I usually need some time to come to terms with what the right decision is but then, once I know what I need to do, I just have to figure out how to make it happen.

Friedrichshafen in Germany: Lake Constance (known as Bodensee in German) and some gorgeous flowers I saw. (x)


As always, I feel sure that I’ve missed some. But hopefully these will be somewhat helpful to somebody. If any of you guys have any tips you’d like to share, please stick them in the comments!

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.