My experiences with travelling as a person with Autism

Long flights, missed ferries, language barriers and the daunting task of choosing where to go in this great wide world. Travelling is something of a nightmare for anyone, but when you have Autism it’s usually a recipe for disaster unless planned carefully, (and by carefully I mean with extreme precision). Followed by also writing down possible nightmare scenarios that could occur and at least five ways to solve them, so when the inevitable holiday mishap occurs you don’t end up having a meltdown in the middle of a foreign train station, where you only speak a limited amount of the language you need to communicate with the people around you for information that might help you (personal experience alert). Thankfully however, obsessing is a trait of Autism, which for me meant I spent two years planning a 7 week trip. Mishaps still occurred however, because no matter how well organised we are the universe will always find a way to hold its middle finger up to our faces.

I have high functioning Autism/Asperger and Anxiety disorder. Although the phrase high functioning is actually quite damaging. High functioning or mild is used for the benefit of others. You experience my Autism mildly and therefore i appear to be high functioning in a neurotypical world. But the phrases are damaging because it implies that I also experience my Autsim mildly when really I don’t it I just don’t present in a way that is stereotypical for Someone on the spectrum.

I loathe crowds and going on a contiki tour or any other group holiday is almost guaranteed to cause intense meltdowns. But I’m fascinated by history and the different cultures throughout the world and I enjoy travelling…. Alone.

I mean I would still go travelling with a friend, but i‘d be extremely selective, I’d only go with someone who I knew would be able to accept all my quirks without getting too overwhelmed, and who would maybe give more to the planning process. But mostly I’d only go on a long trip with someone who I’d been on smaller trips away with before. Theres two people who make that list; one ive known since I was 10 and is like a sister me, we’ve been through far too much together for a trip away to destroy our friendship. The other is one of the most loyal people ive ever met, she’s also like a sister, and when her family and mine divided by a relationship breakdown she stood by me and said:

“It doesnt and shouldnt affect us, we’ve developed a great friendship, if they don’t want to talk to each other anymore that’s fine but I’m not giving you up.”

Now she spends at least one weekend a month at mine, we sew together and she sits and listens as I ramble about topics like how they built Hadrian’s wall, the history of Names in England and the Anatomy of different insects.

True frienship is difficult to come across, but it does its like a wave of diamonds falling down up on you; you simply want to leap up and grab everything you can.

It was November 2017. Id just completed my Bachelors degree in Modern History and we had a month to finish planning our trip to Europe. Now by we I mean me and my friend who for privacy purposes and because just calling her ‘the friend’ feels clunky, so we’ll call her Sarah. Me and Sarah had worked together in retail for 4 years by 2017 and we’d become friends within the first few weeks of knowing each other. When we both started studying at the beginning of 2015 we decided that we’d celebrate graduating by going on a trip to Europe. Sarah was Australian and despite having Portuguese heritage had never been to Europe. I however, grew up in England until I was 15. Therefore when it became clear England would be our focus for this trip, I took on the job of planning. Queue two years of obsessive information gathering, choosing where to go and booking hotels that were within budget but not to far from sites we wanted to see.

I was in my second year at uni and was plodding along with my modern history degree when we really started to plan. You see although I love all history I’m especially attached to specific time periods and aside from the French Revolution they’re all before the fall of the Roman Empire in Western Europe in 476ad. In fact most of them are some 3000 years earlier. So although I enjoyed my modern history degree I didn’t Love it. I’m not really sure why I stayed or didn’t transfer to the University of Western Australia where I am now. But I honestly think it had to do with two things. A friendship I formed on the first day of university, which would last for my entire bachelors degree. After all making friends is a bit like climbing a mountain when you’re on the spectrum, even the thought of saying hello to someone terrifies me and talking beyond that without going off on a tangent… well you can pretty much forget it! But there I was meeting a friend who I clicked with immediately and losing her terrified me. The second thing was that I found out I had Thyroid cancer in my second year. Change has terrified me my entire life they make me feel overwhelmed and lost, so the idea of moving to a new university seemed to difficult at that time. I will talk more about how my decisions surrounding these events have effected me in my next article.

Anyway back to 2017

I was in my second year of university and at the end of the previous year I had noticed a lump on my neck. At first I thought I was imagining it and I put it to the back of my mind. It was November I had exams and Christmas was coming up; I refused to stress about something else as well. Stupid I know!!

But it kept growing and although it wasn’t noticeable straight away those I’d discussed it with could now see it. So the tests began.

Blood tests came back pretty much fine aside from the usual low iron, but then there was an ultrasound, which came back as being in a grey zone… Grey Zone story of my life…

Essentially they weren’t sure what the lump was, and so they chose to do a biopsy. Up until then this had probably been my worse nightmare: biopsies. I loathed needles and anaesthetic may reduce pain but it stings like crazy at first. Needles make me panic and can send me into a meltdown and needles going near my neck are likely to make me break out in a sobbing fit of fear. Well they were I’m strangely used to that now. Anyway the test also came back as inconclusive. But by this point due to high levels of thyroglobulin, they suspected thyroid cancer; so they made the decision to remove the side of my thyroid with the lump on it and test it for malignant cells.

I won’t go into too much detail because I’ll be writing about this more in another story. But essentially in March 2017 I had the left side removed, which came back as cancerous and so in June I also had the right side removed. This led to more blood tests and regular ultrasounds and PET scans and radio iodine therapy. Now thyroid cancer has a very high survival rate as long as it’s caught early and regular blood tests and ultrasounds happen for the next ten-year, but still cancer is a terrifying word. During all this my autism was something of a double-edged sword. Essentially I don’t Do emotions; well Actually that’s wrong… I do emotions; I just don’t portray them as well as Neurotypical people. I bottle them up until one day one word, sound or bright light sets me off and I’m in full meltdown.

Overall by the end of 2017 I was beyond stressed. And yet through all this I’d still been keeping my head down and doing 4 units at uni and working around 20 hours a week. I needed a break and soon.

For a while the trip was just a topic of discussion we ended up on every afternoon at work or when we had a movie night at my house. But then along came my mum, considerably aware as usual of how much I was struggling and combined with the excuse of it being my 21st that year and the savings me and Sarah had both saved up; she offered to pay for my flights to take away some of the financial strain. And suddenly it was happening me and Sarah were going to England for five weeks.

Now you’re probably thinking: “hold on didn’t you say you prefer to travel alone?”

And yes I did say that, this is the holiday that taught me that.

Now I want to make it very clear, I adore Sarah and though we’ve drifted apart of the years I still cherish our friendship. She wasn‘t a poor companion to have on a trip if anything I was the bad companion. Excitement practically sang from Sarah and there was awe on her face at every new thing, while I was constantly aware of times and next destinations. I’m not really sure why we stopped talking but life moves on and we both went in different directions.

Despite wanting to explore more of Europe; we had limited funds and neither of us had ever been on a holiday without our parents, so we chose to stick to a place that at least one of us was familiar with: England, and spend a week somewhere else right at the end of the holiday:Greece…

Yep Greece in January!! I know right? WTF. I mean Greece is beautiful all year round, but it’s basically closed during the winter. But it’s warmer than elsewhere in Europe and despite a few hiccups we actually really enjoyed it. I did recommend France and Germany, but we somehow ended up in Greece still. Also as someone with Autism who’s obsessed with all the little details I have no idea how I let that slide and agreed to go to Greece in January. Maybe it shows just how tired I was while we were planning all this.

I told three people from my family that I was in the country: my Aunt, my Sister who we would be staying with for a while and my Dad; who I hadn’t seen since 2012, and have a loving yet somewhat rocky relationship with. Basically me and my dad are very alike and sometimes it’s a bit terrifying.

To be honest despite the amount of time I spent on it our plan was kind of thrown together, if we’d really thought about it we probably wouldn’t have spent so long in my hometown and would’ve skipped Greece altogether, either using the time to go to Scotland or Ireland or even just a european city which doesn’t shut down in winter like hamburg, paris, vienna or plague. But we didn’t think of that; which is unusual for me. But the stress of 2017 had got to me and all I could think of was that I wanted to leave. I didn’t really care where we went on the holiday after we’d gone to England, I just wanted to see my sister, have a meal with my dad and explore the country I grew up in a bit. I wanted to feel the cold breeze on my skin, walk through snow in the countryside village I grew up in and watch a west end show like I used to as I child. After that I didn’t care about where we went for the last week or so. Any other year I would’ve planned everything perfectly and had many back up plans as well, but that year well I didn’t.

I was packed and ready to leave probably a week prior to the trip. I did check my suitcase numerous times during that remaining week but i rarely changed anything. Just anxiously opened it praying i hadn’t forgotten anything, knowing that if i found I had I’d immediately want to pour everything out and start again just to stop the tapping nerves in my brain everytime I thought of that suitcase. I did however probably take far to much stuff in an attempt to feel as prepared as possible… stuff still went wrong though.

We met at Perth Airport and thats when it started…. My friend had never been as far as England before; in fact the furthest she’d been was around a 6 hour flight. So i was the only one reasonably used to long haul flights and everything that came with them. Although you can fly directly to England; if you start your trip off in london or choose to take a train ride to wherever you’re based from Heathrow. We had two stop overs one in Doha and one in Schipol. Flying during the Xmas period is expensive and we were desperate to save money so we could use the money left over to do other things on the holiday. Two stops are all well and good though, airports are pretty straight forward really and although the amount of people often makes my skin crawl, the level of organisation in most international airports is something I find delightful. So I took charge, which meant I was also anxious, probably a little snappy and just overall irritated with how blazé my friend seemed to everything.

Let me explain…

I am not a calm person. Especially not in a place like an airport. I really try to be and for a few hours i can put on the facade that i’m all chill and everything is okay. But eventually i get irritated and I need to make sure everything is going exactly to plan. I like to assess everything as soon as I get anywhere and do everything that needs to be done as quickly as possible. No matter how long I have between flights after getting through security I always find my gate first and I will continuously check I’m right about its location afterwards as well.

The person I was with however, was much more blaze about the situation, she just seemed far to relaxed to me and constantly dawdled stopping to stare at different things. Looking back I suppose she was just overwhelmed or in awe of the world around her. But my brain doesn’t work like that. Standing and staring at the beautiful architecture of Doha airport isn’t something my mind can do. If it wasnt in an airport and I didn’t have a time limit then yes I would’ve stayed and studied every mosaic tile and chandelier in that airport; imprinting the patterns into my brain. But the fact is it was in an airport and I did have a time limit, so I couldn’t gaze at the scenery. If we’d found the gate first and established we were on track I may have felt a bit calmer but instead it was like I was constantly checking the time, unable to sit still in case I wasn’t ready to sprint to the gate as the final call was announced. Even though this was never going to happen as we had plenty of time, but my mind couldn’t seem to grasp that concept.

By the time we got to England (we landed in Manchester) and were walking towards to catch the first train of our holiday, I felt exhausted. Despite this, heading towards a place I love so much filled me with a calmness I hadn’t felt since I left England. Memories that made me miss the little girl I once was, as unsure as she was of the world, she was content in the bubble her family had built for her. Memories of messy plaits in her hair, sitting on her brothers strong shoulders, as her sister laughed and teased her; as all big sister should. They’re bittersweet memories, but at the same time they warm my heart and make me smile.

Sarah had requested to not only see a castle (as most people who haven’t been to the uk or Europe do), she also requested to see somewhere that showed off England’s beauty, somewhere that in England stands out as one of the most beautiful places in that country. Damn was I glad we were only going to England and not Wales, Scotland or Ireland, there’d have to many options then to choose from. So I took her to the Lake District. Neither of us were really into party scenes or running from one place to the next, so we decided to take a few days to explore Windermere and the surrounding villages/towns by ourselves before we went anywhere else. If I’m honest I think those few days were my saving grace, all I knew was that we were going to Grasmere to have some Gingerbread and would just enjoy the lake and the winding roads of Cumbria. I knew the exact route from our hotel to the train station for our next journey about two week before we left Perth and when I confirmed my knowledge when we got there I took comfort in it. So for a few days I was as relaxed as I could ever be.

Well this has gotten a lot longer than I expected. Originally this was supposed to be a two part series comparing my first trip away with a friend to my trip alone and exploring how I handled everything as someone on the spectrum. However I think i’ll end with our arrival in the Lake District for now. Next i’ll explain the nightmare that was our luggage vs trains, and catching up with my Dad, while we explored Lincoln and worked our way south towards my sister, so we could use her home as a base.

I’ve already started the next part to this so it May be up within the next three days I think, but please don’t hold me to that. 😅

Tell me how do you prefer to travel? With friends, family, alone? Did you have that one experience which changed the way you approach travelling as an adult?

keep plodding along everyone

EJ