If you’ve been reading my blog, you know a lot has been going on the last two years. I mean, besides the obvious (we’re looking at you, Covid-19). Around two years ago, Devin and I started to realize we were both autistic and had ADHD, as well as some assorted other comorbidities. We were both diagnosed with ADHD in April 2021, right before we came back to Mongolia (where we have not been able to follow up with a professional, since psychology is just being born here). Devin has since been diagnosed with autism as well as a couple of other things on a trip back to the US last summer, while my autism remains self-diagnosed because at my age, why bother? Self-awareness is enough for me; I don’t need school accommodations like Devin does.
So there was that.
Also, a couple of months after we came back to Mongolia (in July or August 2021), Devin started developing a variety of chronic health issues, ranging from joint and back pain to intense fatigue and brain fog. A lot of our time since then has been spent trying to figure it out, including multiple trips to doctors here in Mongolia and back in the US. Devin has pretty much gotten used to their condition, though we keep a running log of symptoms in an app on my phone.
The onset of a lot of this coincided with the pandemic. We didn’t travel much, except for a one-week visit to Nha Trang, Vietnam, last April for spring break and a trip back to California last summer to pursue various diagnoses and see friends. This past winter break, from December 23 to January 7, we decided to go to India for a vacation, mainly to get somewhere warm. A lot of Devin’s physical symptoms are worse in the cold, so we thought thawing out would be a good idea. We hadn’t been to India before—I have always wanted to go—and the opportunity seemed too good to pass up. Our flight from Ulaanbaatar was in and out of Delhi via Seoul, so early in the fall I spend a couple of weeks trying to figure out where in India to visit during the two and a half weeks we’d have. I settled on Delhi, Agra, and then the beach town Alleppey in Kerala, where we’d stay for a week to relax before heading back to Delhi and Ulaanbaatar.
Obviously, we could have done a lot more. There are a lot of places in India I’d love to visit. It was overwhelming to decide what to do, but since I’d always wanted to visit Kerala (I’d read about it as a comparison to Marxist Ethiopia in graduate school), that soon became my top choice. And I just had to say the word “beach” to Devin to convince them. Besides, in the midst of the harsh winter we’re having in Mongolia, a week at the beach seemed like the best possible idea.
I’ve also written about how neurodivergence has affected our travel patterns over the years, with a preference for staying in one place for a longer time rather than flitting about from place to place. We did a little bit of both on our trip to India, and it worked out well, especially since our relaxing longer stay was at the end of the trip. This is something to remember for future travel planning, for sure.
But on this trip, I was able to more fully see how our disabilities shape our travel, especially since Devin’s physical disabilities have become more apparent. They affect little things, like how we get around. For instance, I’d originally thought we would take the train from Delhi to Agra, but we decided it would be easier and more comfortable to hire a taxi instead, especially with our luggage. I think if I’d been on my own, I would have opted for the train, but the way we went was good, too.
This was also the first trip Devin brought along any mobility aids. They have a cane and a pair of crutches we got in the US last summer, but they are still figuring out how to use them. It’s tricky because they don’t need them all the time, and they don’t like carrying things (I’m usually the pack animal on our excursions). They used the cane a couple of times on the trip and were glad they brought it, but they still have to figure out how to comfortably have it with them when they are not using it. It’s collapsible, but only to a point, so it doesn’t get small enough to fit in a daypack. And it definitely came in handy at the airport when Devin and I were allowed to board a plane early because the Indian gate staff in Delhi saw Devin standing in line with the cane and waved us through to go with the group in wheelchairs. (This didn’t always work; we were trying to board in Seoul, and were with the correct group, but the Korean gate staff in Incheon made us wait for some people who were late to board with a prior group.) So we’re still figuring out the best way to use mobility aids, but I give Devin a huge amount of credit for trying. They want to be accustomed to using aids before things reach a point where they can’t get around without them.
What had a far larger impact was our neurodivergence. I’ve become much more attuned to that since we both started on our voyages of discovery two years ago, when we both started to realize we were autistic with ADHD. Devin struggled a bit on this trip, and I struggled mainly because they were struggling, but also because I have developed more anxiety about certain things, which I’m starting to come to grips with. Something I’ve done since Devin was little is to plan a lot of down time so that we both can relax and don’t feel overwhelmed or rushed. And I try to stay in places where I’ll have something to do while Devin is getting their down time, because I tend to be a bit more active when we’re traveling.
One thing in particular that I noticed was how little tolerance Devin has for talking with, or more accurately being talked to by, strangers. We had a couple of guided tours, one in the part of Old Delhi where we were staying and one of Fort Kochi when we were staying in Alleppey, Kerala. The tour of Old Delhi was a proper guided tour, on foot, with a guide who spoke very good English and was knowledgeable of the history of what he was showing us. I think we both had a good time, but there were moments when Devin was noticeably unhappy when the guide tried to engage them individually. Their response is to look down or away and not respond, or only minimally respond, when they don’t feel comfortable with someone talking to them. This can make people try harder, which only makes it worse. I try to intervene when I see this happening. I am pretty sure I was like this when I was in my early teens, but I overcame it by just forcing myself to talk to people and act friendly.
Devin doesn’t see the point in small talk or interacting with people they don’t really want to interact with, and they will eventually get angry if someone doesn’t take the hint. This happened on our tour of Fort Kochi, which was more of a semi-guided taxi ride around the old European-settled area of Kochi, about an hour’s drive from where we were staying in Alleppey. I had picked out a few things I wanted to see in the area, including the Kerala Kathakali Centre (Kathakali is a form of classical Indian dance), Mattancherry Palace, and Jew Town, a historic Jewish neighborhood with an old cemetery and synagogue. I wasn’t sure if the taxi driver was going to just drop us off and pick us up again, or take us around, but it became pretty clear he was going to do the latter, and he had his own idea of what we should see.
We ended up seeing everything but the Kathakali Centre (which he said was closed), and unfortunately by the time we got to the Jewish neighborhood, the synagogue was closed and we had so little time left we could just walk up and down the main street and pop into one art gallery we saw. The driver also took us to a couple of extra places I hadn’t thought about, including a place where you could see the old Chinese-style fishing nets that line parts of the shore around Kochi, as well as the Church of Saint Francis, where the Portuguese explorer Vasco de Gama was initially buried in 1524. And on our drive back to Alleppey, we stopped off at the International Coir Museum, which is both a museum featuring interesting objects made out of coir (a material produced from coconut husks) and a national training center where people come from all over India to take a year-long course in making and weaving coir.
On the whole, it was a good tour of the area (though I was annoyed about the Kathakali center, because even though the performances were in the evening, I’d read that there was a museum where you could see the costumes and get a sense of what performances were like). But Devin did not have a good time, in part because they had thought we’d be dropped off and do our own tour, which is what I’d been thinking as well. But honestly, once I realized what a crowded, bustling maze the Fort Kochi area is, I was happy to have a taxi bring us to the highlights. If we’d had more time, I would have been happy wandering around and getting lost (because that’s kind of more our style), but I’d only hired the taxi for three hours plus the ride to and from our hotel in Alleppey.
The other thing that annoyed both of us was the system where taxi drivers bring tourists to shops (which are sometimes labeled “museums”) in exchange for a kickback from the shop owner. I’ve run into this quite a lot in my travels, so my response is usually, “OK, I know what’s going on, but I have other things I’d rather do with my time” and politely but firmly convey this to the taxi driver. Devin was a bit less polite and got very angry at one point because the driver kept trying to get us to go to a “silk factory museum” run by his “friend,” to the point of parking in front of it. I’m pretty sure this wasted enough of our time that we missed out on seeing the synagogue because of it, but I was in a very go-with-the-flow space and was at that point willing to see what we could see (though not more shops or unofficial “museums”).
Devin was (understandably) reacting very badly to the pressure and ended up shouting at the taxi driver’s friend. The driver and his friend persisted, with the friend telling me “You should come in because if you do, my driver will get a gift.” I said, “I know that, but this is our trip, and if we don’t want to do something, we don’t have to.” Then Devin and I both got back in the taxi. I think they are used to tourists who are just there to buy stuff, which seems to be a common form of tourism in some of the parts of India we went to (refreshingly not in Alleppey, which is one reason we enjoyed it so much). But we really just wanted to wander around looking at the historic neighborhoods and buildings.
Also, I was not being super assertive. I realized what was happening to me was part of a pattern I have, where I defer to other people around me, in this case both Devin and the taxi driver, which was challenging because of their conflict. But in the end, we got back on track and ended up at least seeing a bit of Jew Town. (I will write a proper travel post about what we saw; this post is just me thinking about a particular aspect of our travels.)
When we got back to Alleppey, Devin was still withdrawn, and I was feeling kind of crappy. On the whole, though, I thought our little excursion into Kochi had been fun, and we’d seen some interesting things. I said something to that effect to Devin, and they replied, “Maybe for you.” But after we talked for a while, they started to mention things they’d thought were interesting, too. They definitely have space to have their own reactions to things, and we’ve both talked about how much it affects us when we feel pressured by other people, so I definitely understood how they felt. I also felt bad about my own part in their negative reactions that day, and I let them know that as well.
This experience started me thinking about how I used to travel compared with how I travel now, and I realized that my focus has been much more about trying to ensure that Devin has a good time and feels safe. Of course, this is my job as a parent, and I also have extra insight into their reactions to things because I’m neurodivergent myself. When Devin was younger and I was more overwhelmed by managing all the things you need to manage when traveling with a young child, I didn’t do as good a job at listening to them. But I’ve definitely learned from experience that it’s necessary to honor their needs as well as mine for both of us to have a good time, and I’m better at doing that. I see a lot of parents who don’t do this, and I feel bad for them and especially their kids.
I will be writing more posts about our trip to India, and posting more photos, but I’m still processing everything we saw and did. I feel so lucky that we were able to travel there together. We may not have seen or done as much as we could have in nearly three weeks, but it was a very full trip, enough to carry me over to the next one.