I’m 14 and autistic. This is what I wish parents knew about summer holidays

Laila It is half way through the summer holidays, and I’m wishing I was back at school. I’m not a soppy nerd (well… not really) – I’m autistic, and I can’t deal with long amounts of uncharted time. Holidays have always been very stressful for my family. I begin to feel the acute overwhelm in April, when my we start planning out our holiday schedule. It is genuinely terrifying to me. There’s nothing more stressful than my parents starting a sentence with: “So, we should really start talking about summer…” I usually block my ears, indignant and precocious. The way my brain visualises time, as I’ve come to understand it while growing up, is not normal. I cannot understand how near or far things are in the future; I have no mental depth perception. This can really make me feel lost and blind in the world, like a mole in the summer sun. I can’t plan, and the idea of committing to the few plans I make is so scary. Last year, in the May half term, I was boarding a long flight to Cape Verde with my family. Suddenly, just metres from the plane, I flipped. I probably argued with my parents about something small — so small I can’t recollect it. I ran away, dragging my wheelie suitcase, screaming at other holidaymakers around me. Shorts I was scared at the lack of control of being in a plane, and hoping the pilot won’t fall asleep. Having to give up autonomy is always hard and in a new environment it is even harder. Eventually, I had to be physically dragged onto the plane by my parents while other jolly families stood trying to shield their children from the mad girl. I frequently try to imagine how awful this must be for my family. “I can never look forward to things,” my nine-year-old brother mumbled that morning. After that trip, my parents decided that we just could not go on a plane anymore. I’d always loved travelling. My parents adore it; it’s practically the foundation of their relationship. And I’d collapsed it. Trains are also hard — a few months ago, my family were going to Brighton to meet family friends and I was so excited. But when we reached the stop before ours, a similar thing happened as it did boarding the plane. “I feel trapped. You’ve trapped me here. I need to go home.” My dad disembarked with me and we went to find a return train home. As luck would have it, while waiting and grabbing a coffee, we bumped into our friends. This meant I managed to stay, and have a great time. But the day and journey were still sullied. For all of these reasons, my family isn’t doing much at all this summer. We have just come back from Scotland, where we visited my grandma, and earlier this month we went to Latitude Festival. Although the latter took a long time for my dad to agree to, as last time (two years ago) I stormed off twice. ‘Even though, like many autistic people, I can for the most part mask discomfort, and even though I find doing new things challenging, doing nothing is so much worse,’ says Laila My parents had no idea where I was, and my phone had no connection. I was lost and sensory-overloaded. It was a nightmare for everyone in my path. I sat alone in the sweaty, tiny tent for most of the day. Every concert was so overwhelming; there were just so many people screaming and moving. I wish I could say that this year’s Latitude was a smooth weekend – that would be a cinematic end to a fairly miserable collection of anecdotes. But the trip was a painful flashback. In the car, I froze and cried and demanded that we go home. We parked outside a random house half an hour from the festival site while my parents shouted, my little brother cried, and strangers stared at us. We eventually managed to get back on the road. During the weekend there were more arguments but we did have some moments of fun and peace. I had a lot of time sitting in grassy gazebos drinking overpriced iced lattes. You might reasonably ask: if I find these things hard, shouldn’t I, well, just not go on holiday? Or not agree to go to a festival? But I’m not ready to give up living a somewhat “normal” life. I know I am supposed to enjoy these things. Many people do, in fact; most of my friends do. Even though, like many autistic people, I can for the most part mask discomfort, and even though I find doing new things challenging, doing nothing is so much worse. (Another hefty kick in the teeth is my contrariness). I have also learnt about some specific accommodations that work for me. Here are some specific things you could either find useful for yourself, or use to support somebody in your life. ‘Travel involves a lot of unknown, unexpected scenarios — and for somebody like me, that’s hard. And unfortunately, if something’s hard for me, it’s hard for my poor family too,’ says Laila, pictured here with her dad, Saf First of all, I need to have flexibility. This involves ever-changing plans. For instance, recently we packed up our car to go to Wales. But then I went back to my old trick of refusing to go. After a while, I managed a gentle debate, and we decided, as a family, to drive up the next day instead. This gave me more control and flexibility. Also remember to allow yourself some quiet time. When I went on holiday with my family in Zanzibar, I immediately felt overwhelmed and exhausted, so I ended up missing a lot of planned activities and instead watched Mean Girls in the hotel room. It really helps me to have consistency. When I was in Italy four years ago, I just wanted to eat bread and butter, my comfort food from home. At the time, nobody understood why I didn’t want gorgeous sourdough pizza or creamy pasta. I have learnt that many people see the word “neurodivergent” as some sort of faux-intellectual synonym for lazy. But, travelling over the years, I have had to be anything but lazy. Travel involves a lot of unknown, unexpected scenarios — and for somebody like me, that’s hard. And unfortunately, if something’s hard for me, it’s hard for my poor family too. Admitting that you’re struggling is not a comfortable conversation but I can still travel, just differently. ‘We’re determined to not give up on holidays – it’s too grim an idea’: Laila’s father, Sarfraz I used to love travelling. One of the things that first attracted me to my wife Bridget was discovering, on first meeting her, that we shared a passion for seeing the world. Just six months after we met, we spent six weeks exploring India. I knew that having children would change the way we travelled but we had no idea it would so fundamentally alter my entire relationship to holidays. These days even the prospect of leaving the house with the family fills me with deep anxiety because I can never be sure the trip will happen. ‘One of the things that first attracted me to my wife Bridget (left) was discovering, on first meeting her, that we shared a passion for seeing the world,’ says Saf, Laila’s (right) dad I’ve lost count of the number of times when we have packed the car for a trip and just at the moment when we are about to leave, Laila’s anxiety has spiked meaning we have had to unload the car and stay home – or wait for her to feel more calm. If we do manage to get in the car there is a strong chance that just as we are arriving, Laila will suddenly demand that we stop, turn around and go home. This can happen even on a motorway and being trapped in a moving vehicle with an increasingly agitated teenage girl is not much fun. Car journeys do offer some control – we can leave later than planned or not at all – but that is not possible with airlines, which is why I am so nervous about any holiday that involves flying. It is hard to ever look forward to any trip and that is deeply sad. It is sad for Bridget and I, it is sad for our nine-year-old son Ezra who is all too experienced with having his holiday subject to last minute changes and it is also deeply sad for Laila. I do, thanks to work, get to travel without my family and Bridget will occasionally go away just with Ezra. But despite the challenges, we are determined not to do the easy thing and stay at home. That is partly because the prospect of a future without any travelling feels profoundly grim. It is also because with every passing year and trip Laila is learning to manage her anxieties- so our experience this year cannot necessarily predict what might happen next year. We also know how much Laila does not want autism to shrink her life and, as our photographs show, for all the challenges we have had some lovely times too. Laila has written about how hard it was getting to Latitude but she didn’t mention the two of us enjoying Billy Ocean, joyfully singing along to Caribbean Queen. Every trip we have taken in recent years has been studded with tears and drama but also sprinkled with sparkling memories – and in the end that is why we keep getting in the car, hopping on the train and, hopefully one day soon, boarding a plane.