Tales From An Autistic Family: Travelling? Yuck!

Some autistic people like to travel. I am not one of them. I get too anxious with all the planning, actual travelling, staying in a different place, and not knowing what to expect. It is not a break for me. Staying home is more my thing.

We took a big vacation at the beginning of July. We travelled to Brighton, England for a week. It was very stressful planning for it in the midst of planning a symposium and writing a book. Micah also wanted to go to Scotland and Ireland but it was going to be too confusing to arrange so I left it. We did say we would go to London one day for sure, though. She wanted to see The Eye (a big ferris wheel) which had been shown in Dr. Who and Sherlock.

I managed to book a flight and an apartment. We have never booked an apartment before, just a hotel. I did it through Trip Advisor. It is best for us to have a kitchen and it was cheaper than a hotel. When you have celiac disease and other intolerances, it is hard to know if the food is safe in new places. We were told that there is plenty of food for celiacs in England. There are many people diagnosed there and they are supposed to be more enlightened there. I still wanted the apartment so we could at least not have to rush out for breakfast in the morning.

A couple of weeks before we left, I contacted the airline about disability accommodations and gluten free meals. I told them we are all autistic, all have celiac disease, and all have physical disabilities but don’t use walkers or wheelchairs. I told them we needed to be seated together etc. and they also asked if we wanted someone to take us through the airport, security, and so on to our gate. I said, yes. I have never asked for accommodations when flying but this was a much longer trip and we all get stressed finding our way.

I also had to book a pet sitter for the smaller animals and a kennel for the dogs. Most of the trip planning could be done on-line but some had to be done on the phone which I struggle with. The phone calls were left as long as possible. I don’t get the right information across and I don’t receive it properly either.

Trip day came and we got to the airport. My friend had suggested we drive instead of getting a taxi. I always assumed it was super expensive to leave the car at the airport but it isn’t. Turns out, it is cheaper than a taxi. The first problem (minor) came when we tried to get into the parking lot. First it said it was full and then it turned out that the pass I bought on-line wasn’t right. I didn’t realize that it was a 24 hour clock and bought it to start at 7am instead of pm. Okay, a little stressful but we got parked and found the terminal. Next was the fun (sarcasm) part. We had been told to go to a certain counter for our airline. We said we had accommodations and that someone would be helping us. We were told to meet near the end of our airline’s counters an hour and a half later. It would put us at only an hour before boarding to still go through security etc. Strange but okay. Our family arrived at the appointed spot, at the stated time and waited…..and waited. As we waited, more people came- parents and children. They didn’t look disabled but neither do we. The escort person came finally and called out the names of three people- all children. My husband asked about us and we were told to go with that group- the unaccompanied minors. They decided to put our autistic, physically disabled family with three children. Why? I’m not sure. Was it convenience (for the airline), did they not know what to do with us, or did they think autism meant childish. I have no idea. For whatever reason, we were grouped with these kids and our ‘chaperone’ rushed us through the airport. We moved fast! We almost ran. We ended up going down escalators. Micah struggles with those so we usually take the stairs or elevator. We were going so fast and the leader was way ahead so we weren’t able to stop and tell her our problem. I think we were also shocked at the whole thing and couldn’t get the words out anyway. Somehow, Micah managed to safely do the escalators. The chaperone rushed us through security, getting us to the front of the line but didn’t explain what to do. Of course, I set off the alarm- was it my belt? Ventolin? More rushing and we finally go to our gate where we could relax.

We were not impress with our disability ‘support’. I had told them we had physical disabilities and yet they had us almost running through the terminal. Obviously, I have to be clearer about how we need to be supported with our autism i.e. we need explanations of what to expect and what to do, our sensory and movement issues, communication issues. I also need to be clearer about our physical issues.

We survived our flight and had our vacation. We were just on the outside of the very busy area of Brighton so it was quiet for us in our apartment. It was much quieter than any hotel we have stayed in. Much nicer.

The day we went to London, it was pretty simple to find the train in the small Hove station and then our tour bus in London. We were all fidgety at the end of our tour. It took four hours due to traffic. The anxiety levels in all of us started to go up. We had found a gluten free restaurant before our tour and decided we would eat dinner there before taking the train back to Brighton. There was a 30 minute wait for a table which is not good when you are already stressed. We got a snack elsewhere instead and then went to find our train. We would have to eat dinner later. It turns out that there are a great many trains that leave London and some of them separate cars at certain stations. My husband had to ask several employees and we missed a train or two before one of the staff called to us that a train coming in was the right one. We all had to sit with strangers because it was already pretty full. I just wanted to get back to the apartment. It was hard to hold in all of the upset. My anxiety was bad. We survive the train ride but were all cranky.

On our way home from England, we didn’t bother with disability accommodations after what we went through on the way there. Maybe better explanation will help next time but I’m not sure. We are not the typical tourists and we don’t feel we have to go to all of the big sites so when we were in England, we when to the Brighton Museum, the Brighton Pier, and did the London bus tour. Other than that we just walked back to our apartment after lunch or dinner and took in the sites that way. We also visited my aunt and uncle and Micah got to meet them for the first time, which was nice. We need lots of quiet breaks so we don’t get too overwhelmed. That happens easily especially when travelling away from home.

An update to Micah's grade 9 school year---She did amazing! She got Honour Roll both semesters and seems to be looking forward to grade 10. High school looks like it will be a much better fit for her. Hopefully we can keep the support all the way through so she can continue to do well. I know it will be a battle but other people manage to keep their support so it is possible.