Incognito Autistic… in London.

ETA: I have my children’s full blessing to mention them in this post, as it would be very hard to write about what I got up to, and why, without doing so. 

This day last week, I headed to London with my family for a two-night break. It has taken me this long to even think about writing about it because, quite frankly, it exhausted me beyond belief. So exhausted, in fact, that I’m not sure how well I’ll be able to write about it. But I will try to summarise my experience as best I can. 
London has always been my son’s favourite city, so we’d been there twice before. Our latest trip was two years ago. When my friend moved there last year, we decided we had to pay her a visit. When her previously-treated cancer returned this year, we knew we had to make an extra effort. So found out when the worst her chemo treatments would be over, and booked our flights for the following weekend. 

To maximise our holiday, yet be away for the minimum number of nights, we chose the early morning flight out of Shannon Airport. As the drive to the airport takes a bit over an hour, we had to be on the road by 6.30 am. Which, needless to say, the kids and I were less than enthusiastic about. But we managed. The dog had been dispatched to a kennels the night before, and we all missed him already. We grabbed some scones in the airport cafe, and boarded our flight. All very relaxed and uneventful, as it’s a short enough flight and we only had carry-on luggage. 

On arrival in Heathrow, we got the Underground to South Kensington. Our hotel, the Rembrandt, was only a five minute walk from the station. Yes, it was quite pricey, but we decided that seeing as this would be our only foreign holiday this summer, we would splash out on the two nights, as the location was so accessible and close to our favourite haunts. And it helped that we could all squash into a family room instead of having to book two separate rooms. I wonder how much longer we can get away with that!

As the room was not yet ready for us, we left our bags in the storage room, and headed to the Victoria & Albert museum, which was directly across the road from the hotel. It became apparent after just two minutes, however, that the kids are not fans of ‘non-interactive museums’. Luckily, there’s a garden in the central courtyard. Which happens to include a shallow pool and ‘walk-in fountains’. My friend had mentioned these. Seems to be one of the ‘free things to do in London on a hot day when you’ve kids.’ Cue two very happy but soaking wet kids. With promises to return, we headed back to the hotel hoping our room would be ready so I could access some dry clothes for them! 

Not only is my son enamoured with London, he is especially fond of The London Eye. So, I had pre-booked tickets for that afternoon. I paid extra for fast-track tickets, and I’m so glad I did as the ‘ordinary ticket’ queue was horrendous. Getting there was another Underground ride, plus a walk over the footbridge at Embankment. A journey that for most would be a breeze, but which I found incredibly tiring. Lucky I had packed my folding cane. Once on the London Eye itself, I was glad to sit down. The staff, having noticed my cane, offered to stop the pod for me to make it easier to board. Appreciated, but I didn’t need it and so boarded while it was moving. We admired the view, took photos, examined the pulley mechanism. The photos I took all include the kids, but my husband did manage to take a nice one of the Houses of Parliament. 

[image of view from inside our pod on the London Eye. In the foreground is the a River Thames, with a river tour boat on the far pier. Going from forground to background is a green bridge, with cars, pedestrians and iconic red London buses crossing it. In the background are the Houses of Parliament, including Big Ben. Also visible are other buildings such as Westminister Cathedral, as well as cranes. The sky is overcast, with dark grey clouds, but also with some brighter patches.]


As we got off The London Eye, it started to rain. We had promised a ride in the Carousel, so we queued up and quickly got onto the painted horses. Once upon a time, nothing on earth would have enticed me onto a carousel. But my children adore them, and my daughter needs me to sit behind her and hug her tightly, so I’m slowly getting used to them! Though my husband says my facial expression expressed ‘get me off this thing!!!’, so I obviously don’t hide it well. After the ride was finally over, we bought some obligatory candy floss and headed back to the hotel. Later, we had dinner in an Italian restaurant, after we had examined the Food Hall in Harrods. Again, I had my cane with me. And I don’t know if I’m imagining things, but people seemed a lot more considerate towards me than I’m used to. Maybe it’s because my disability was a lot more visible. 

I won’t go into details on how the rest of the night went. Let’s just say, none of us got much sleep. We never do, especially away from home, which was why we’d limited the trip to two nights. 

We’d arranged to meet my friend and her family outside the Science Museum the next day. Again, it was only a five minute walk from the hotel. The area outside the Museum, between it and the side of the Victoria & Albert, seemed to be a semi-pedestrianised ‘shared space’. While this seems good in theory, I found the cars still travelled too fast for me to relax, and I had to keep reminding the kids that they weren’t actually on a footpath. 

As is my habit, we arrived early. Arriving late, or even on time, distresses me too much. My friend arrived a tiny bit late, with her husband and two kids in tow. The last time I’d met her was five years previously. She’d been home on holidays, as she lived in Hong Kong at the time. Her husband, I hadn’t met since their wedding. Her daughter I’d met while a baby, she is now a fabulously precocious six year old. Her son, I’d never met before, seeing as he is just four years old. We headed into the museum and went in search of ‘interactive stuff’. 

The last time we’d visited The Science Museum, there was a whole interactive section full of levers, pulleys, sand, water etc. But that section is closed for refurbishment. We did find a special exhibition called “Power Up” but as that needed tickets, and as my friends kids are not gamers, we decided to go to that ourselves the next day. Finally, we found a section called All About Me (I think?), that included some areas with screens and games. 

In one corner, a few computers were set up. The staff informed us it was a study about imaginative play. It was actually about attitudes to disabled people and whether this was correlated with personality types. I think. To be honest, even though I read the consent forms and signed them, I’m still not really sure what the study was about. Anyway, as my friend’s daughter wanted to ‘have a go’, I thought nothing of my daughter also taking part. There was a parent questionnaire too, which consisted of answering questions about my daughter I’d answered a million times this year, all about how she interacts with her peers. And also about my attitudes to disabled children and how welcoming I’d be of her having a disabled friend. Nowhere during the session was I asked if my daughter had a disability, and no option to add that in beyond a vague ‘is there any comment you’d like to make’ section at the very end. My daughter later said ‘it asked me about if I’d make friends with a disabled child, but I’m a disabled child and I couldn’t click that, that option wasn’t there.’ She also told me it seemed as if disability was defined by being in a wheelchair. I didn’t comment to the staff at the time, but I’ve since emailed my concerns to the museum. 

As we’d all had enough by then, we headed out for lunch. My friend recommended a kid friendly pizza and pasta place nearby, so we walked there. I was surprised that even though my friend is the one with cancer, she seemed to have more energy than me. But I know very well that looks can be deceiving. The kids tucked into some pizza, while we tucked into catching up! It was lovely talking to her about life in Japan (where she’d also lived), Hong Kong, and London. We didn’t talk about her cancer, my chronic illness, we didn’t talk about autism (even while my son blissfully stimmed his way through lunch). And it was really nice. She’s my ‘oldest’ friend, I’ve known her since I was about nine, so over thirty years. We used to be in the same class in school, lived about a ten minute walk from each other, and our moms are very good friends. Our daughters also seemed to hit it off, which I know we are both really happy about. They’ve decided to be Pen Pals, which is great. It would be nice if they could be the third generation of friendship between our families. 

After lunch, I realised I’d left my bag behind in the Science Museum. We walked back and while the dads and kids waited outside, my friend and I went in to get it. After having successfully described the contents of the bag, a staff member led us into hidden areas of the museum, while my friend and I did more catching up. My husband always marvels at the ability of women to ‘download data’ at top speed, so that all the important stuff got said. Once outside again, reunited with my bag (and the all important cane within), they said their goodbyes and we parted company. I think we were all tired out by that stage. 

We returned to the hotel for a lie down. My husband had spotted an ‘American style diner’ while we were at lunch, so we returned to that area later, while detouring to marvel at the ridiculously expensive houses and apartments in the area. The menu consisted of the usual burgers, chips, hotdogs. Until I spotted them. Corn dogs. Now, corn dogs are not generally available in Ireland. And happen to be my son’s Very Favourite Food. The diner was very loud inside, so we sat outside, which luckily was just about warm enough to do so. And ate lots and lots of corn dogs! Which my son proclaimed the highlight of his holiday! 

As we were pretty tired at this stage, and the sun had long set, we took the Underground one stop back to the hotel. Which again pleased my son no end, as its one of his very favourite things to do, and part of why he loves London so much. 

Again, a restless night was had. Nights are the one thing I don’t like about holidays, not to mention that not sleeping well adds to the exhaustion. 

The next day, after a leisurely breakfast, we checked out of the hotel, but managed to leave our baggage in the storage room. The Prudential Ride London cycle race happened to be on that day, and the route would take the cyclists past the hotel. We decided to take advantage of the closed roads to stroll up to Hyde Park and Kensington Gardens. Being the disabled family that we are, this involved a lot of sitting on benches, eating icecream. A quick visit to a playground. A quick coffee for the adults. Then we strolled back to the V&A to have lunch in the courtyard. The kids were delighted that I kept my promise to return there, and promised not to get wet. And they didn’t, much. 

After lunch, we went to the Science Museum to take a look at the “Power Up” event. It turned out that a ticket got you entry into a 90 minute session, and we arrived 45 minutes into one. But rather than wait, we decided 45 minutes would do, as we had a plane to catch! Turns out, the “event” consisted of 160 games consoles, celebrating 40 years of gaming. The kids were in heaven. They got to play games like Super Mario Sunshine, on the GameCube. A game they’d only ever watched others play on YouTube videos. 45 minutes was clearly not going to be enough. My husband hatched a cunning plan. After the 45 minutes were up, we went out and bought another round. Though this time, we didn’t get my husband a ticket, and he went off to visit the Geological Museum while we headed back in for more gaming. We did have to leave 30 minutes early, due to the aforementioned flight. Which was fine by me, as I was all gamed out by this stage. Tuning out the constant barrage of noise and lights was quite tiring. 

We headed back to the hotel, picked up our luggage, then hopped on an underground train to the airport. It was rush hour by now and we didn’t have a seat initially. My daughter  kept glaring at the man seated in the ‘priority’ seat beside her, muttering that by rights he should give her the seat because she is disabled and that’s what the sign explaining ‘priority’ said. She still does not understand the extra hardship caused by her disability being invisible. 

We got to Heathrow and through security. My son set off the alarm and had to be scanned and body searched and swiped. I’m so relieved he managed to get through this just fine. It helped that I was by his side the whole time. We had dinner at the airport, got our flight, picked up the car, and the kids fell asleep on the ride home. 

So, a very long post to essentially say, we went to London, did some stuff, met some people, and came home exhausted!