Monday, July 15, 2024

Autism makes travel a challenge. Here’s how I learned to cope

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Wandering hand-in-hand through the medieval streets of Bologna, my boyfriend and I were in awe of the sweeping porticoes and distinctive rust-red brickwork of the city. It was our first holiday together. We’d wanted to find somewhere beyond the obvious that would marry our respective interests in architecture and history. Bologna was the perfect fit.

We admired the Church of Santa Maria della Vita, with its imposing baroque interior, lavishly decorated in colourful frescoes and marble carvings. We caught a little red and blue express train up into the hills to the Santuario della Madonna di San Luca, and climbed the bell tower of the Basilica di San Petronio for panoramic views across the city.

But after one particularly long, hot day on our feet, with our stomachs clamouring to be fed, my mood began to shift. With the setting of the sun came the rising of my rage, as we struggled to agree on where we wanted to eat. In a city nicknamed La Grassa (“the fat one”), we weren’t lacking in options; in fact, it was the sheer number of well-reviewed eateries that was overwhelming.

The bustling streets of Bologna. Photograph: Alexander Spatari/Getty Images

Eventually we decided on pizza, and my boyfriend anxiously led us through sun-dappled alleyways, seeking out a little hole-in-the-wall spot with stellar reviews on Google. Looking back now, I’m ashamed of my reaction once we arrived. Instead of excitedly tucking into the steaming, cheese-drenched deliciousness before me, I burst into tears, refusing to order. And why?

Because they were slices.

In my mind, getting pizza meant that we’d be presented with a whole pizza. The idea of just grabbing a slice or two felt abhorrently wrong. It truly felt to me, in that moment, like I was being asked to do the impossible.

Instead, we had to find a standard bistro and get me the right kind of pizza. Scrolling through photographs from that trip for this article, I find a snapshot of my boyfriend opposite me at the table, looking as if he’d just (barely) survived the fury of the Visigoths during the sacking of Rome.

It wasn’t until three years later – in spring 2020, when I was diagnosed as autistic – that this fragment of my life story, and many others like it, finally began to make sense.

Being autistic means that life is a challenge, every day, in myriad tiny ways most others cannot see. Autistic people often grapple with sensory, social and communication challenges that manifest differently in each of us. As a toddler, for instance, I couldn’t stand the touch of grass on my skin. My parents could pop me down on a blanket by our tent during camping trips, safe in the knowledge that I wouldn’t stray. The same went for sand – putting me down to build a sandcastle on the beach only led to banshee-esque wailing until someone picked me up. When I got older, I preferred to stay by the tent and read my books than risk the chaotic din of the campsite playground.

I’ve also always found it difficult when confronted with the unexpected. That could be anything, from a last-minute change of plans to something simply not turning out the way I’d pictured it in my head.

Relentlessly busy places are a terrifying prospect for those of us predisposed to sensory overwhelm. The best way I can describe how I experience this sensation is to ask you to imagine that the whole world has climbed into your chest. It then sits there, heavy and loud and bright, thrumming with energy, too much energy, more than any one person could hold within themselves. And yet, that’s what’s expected of us, day in, day out.

Fortunately, societal awareness of how autistic people interact with public spaces has grown over the past few years, thanks to the rise of lived experiences shared on platforms such as TikTok and Instagram. The thriving autistic creator communities online were a lifebelt for me when I was first diagnosed, providing both insights into my own behaviour and suggesting coping mechanisms.

Initiatives such as the sunflower lanyard scheme are also having a real impact on how employees in train stations, airports, bus terminals and so on are trained in making these places more accessible to those with hidden disabilities.

What I have learned is that many challenges can be overcome with sufficient planning and support from those around me. Through much trial and error over the last four years, I’m making real progress towards learning how to adapt my holiday plans to accommodate my needs. I now have a self-made kit for mitigating sensory overwhelm that I take with me whenever I travel: sunglasses, noise-isolating earplugs, noise-cancelling headphones, a fidget toy or two and a safe food to snack on (a favourite cereal bar, for example). Having avoided meltdowns by using these items in the past, I now can’t imagine travelling without them.

The process of writing my book, The Autistic Guide to Adventure, has provided many useful insights too. Designed to introduce younger readers from the autistic community to a variety of different outdoor activities, the book suggests how to best approach them from sensory, social and communication perspectives.

Take kayaking, for instance, a popular holiday activity in the UK thanks to our miles upon miles of public waterways and easily accessible coastline. I’ve kayaked on family holidays since a young age. Before I knew I was autistic, however, I’d never have thought to give myself extra time to get used to sitting in a new boat in a new location, testing the feel of a buoyancy aid or holding the paddle properly. Yet something as simple as taking the opportunity to do that – on dry land, before the kayak even gets near the water – can make a real difference to how comfortable and confident an autistic person might feel about trying this new activity. Most activity providers are understanding and would be happy to facilitate this, if you let them know in advance.

Allie and a furry friend. Photograph: Chris Moore

Other simple adaptations to recreational activities include using walking poles for all levels of hiking – not only on mountains – and bringing an inflatable for wild swimming. These help to maintain balance, something that many autistic people find hard because of difficulties regulating their vestibular system.

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There will never be one single trip or destination that’s perfect for every autistic person, because our individual strengths, struggles and support needs are so different. But if we each plan ahead and choose what to do or where to go based on our known sensory sensitivities, communication preferences and social battery life, every trip has the potential to be perfect just for us.

Most recently, my boyfriend and I took a much-anticipated trip to the Arctic Circle, visiting Tromsø. There’s a key difference between this holiday and our stay in Bologna five years earlier: the weather. It’s common for autistic people to have strong preferences when it comes to temperature – in my case, I’ll always choose cold over hot.

That’s why Tromsø in December was a sensory dream for me. Plunged into polar night, the light was never brighter than a muted lilac haze for a few short hours around midday. The temperature was consistently below freezing; the snow lay piled in marshmallow-soft heaps along pavements and roadsides. It was as far a cry from the lively streets and humid air of summer in Bologna as you could get, and it was perfect.

Winter twilight at Fjellheisen, Tromsø. Photograph: Preeyaporn Kaewsaard/Getty Images

Learning from previous experience, we planned exactly where we wanted to eat during the trip. We spent several cheerful mealtimes huddled by the fire pit at Raketten Bar and enjoyed Pølse, a hotdog stand in a sunshine-yellow kiosk dating back to 1911.

Autistic people often prefer the company of animals to other humans, but it’s not something I’d ever thought to factor into my travel plans before. In Tromsø, we ended up spending three out of our five days on activities involving animals: huskies, whales and reindeer. It was, without a doubt, one of the best decisions we could have made.

The joy of losing myself in a frenzied pack of newfound canine friends radiates from my face in photos from the day we went husky sledding.

Given that travel is something I treasure, it’s a relief to realise that my ability to do it is not limited by being neurodivergent. On the contrary, I truly believe some of my many travel experiences have been – and will continue to be – enhanced by the fact that my brain works on a different wavelength.

When I close my eyes, I can still see the play of lavender light on the snow-capped mountains surrounding Tromsø. I’m immediately transported back to a place that felt like home to my soul, soothed without having to take even a step outside.

The Autistic Guide to Adventure by Allie Mason is published by Jessica Kingsley (£14.99). To support the Guardian and Observer, buy a copy at Delivery charges may apply

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