Our Guest Editor, Gretchen McIntire (Leary), interviews Stephen Shore, an autistic professor of special education at Adelphi University. He is the author of several books including College for Students with Disabilities and Beyond the Wall. He travels the world speaking at over 1,000 conferences about his experience with Autism and has visited 47 states and 49 countries. In November, he will have traveled to his 50th country to talk about autism – Italy. Stephen took the time to give us a highlight reel of his travels and some travel tips for those with Autism.
Gretchen: You’ve been to so many amazing places around the globe. Where was your first international trip to and why did you go there?
Stephen: My first international trip was to Dublin, Ireland. I went because there was a conference organizer who asked me if I would speak at his conference and it seemed to be a pretty cool thing to do. I also thought it would be incredibly complicated to apply for and get a passport, but it wasn’t. So that was my first trip. I talked about life on the Autism Spectrum. Somebody at the end of my presentation gave me a small harp and so I plucked it a little bit and I realized I could just play Auld Lang Syne on it, so I did. That was on a pentatonic scale. So that was fun. They liked it. They all sang, and it was good.
Gretchen: What is one tip that has greatly helped you cope with the anxiety of being on a plane?
Stephen: I guess I’m lucky because I’ve never been anxious while on a plane unless I thought it was going to get delayed and I would miss a connecting flight. I enjoy being on a plane and even enjoy the turbulence. I know that there are many people who do get anxious. Some things that they can do is to relax by taking deep breaths or think about something else. Planes are pretty tough and can take all the turbulence that gets thrown at them.
Gretchen: Have you ever traveled by train? If so, where did you go? What was it like sensory wise?
Stephen: Places I have been on a train include Alaska (which was a great sightseeing trip), New Zealand, and also from Portugal to Spain I did an overnight train once. There was a nice rhythmic pattern to train travel as it goes across the tracks; particularly the scenes of the tracks.
Gretchen: Of all of your trips around the world which of your trips felt the most challenging culture shock wise and why?
Stephen: I don’t know if I’ve had much in the way of culture shock because I always research where I am going. I always go into [trips] realizing that there are going to be a lot of different things because people do things differently.
I had some great experiences with other cultures such as staying in a Japanese person’s home and using their hot tub, which is a very traditional type thing to do. I enjoyed doing that. I needed to be careful to remember that soaking in the tub was exactly that. It’s not really for washing. You wash yourself taking a shower first and then you go in.
The grossest thing I have eaten is Natto, which are fermented soybeans. They are basically a tactile and taste violation. Tactfully, they are pretty sticky and gluey, so if you pick one or two up with chopsticks, there will be like a long spread of glue-like thing causing it to stick to the rest of them.
I did turn down eating worms and monkey brains in Lima, Peru. I wasn’t interested in eating those. I thought that the monkey brains were probably better if they remained inside the monkey.
Gretchen: Tell us about your favorite trip. Why was it your favorite? What did you see?
Stephen: Going to Israel. I’ve been there three times. There are so many historical things to see. The food is good too. There’s a certain energy about the place. Swimming in the Dead Sea. I remember going there with another autistic advocate and she told me that people don’t really swim there due to its high salt content. It was like swimming in semi congealed JELLO. You can’t really swim, but that’s fine too and you can’t sink even if you try if you stand straight up you might go down to mid chest but no lower than that. It’s a pretty cool thing to do.
Gretchen: Which trip was the most difficult? Why?
Stephen: Probably the most difficult trip was one to Taiwan, mainly because I had injured my back and I needed to get around in a wheelchair. But culturally that wasn’t difficult.
I want to say Saudi Arabia was the most difficult. I wouldn’t really say it was really difficult, but it was the most different place than anywhere I have ever been. Customs were very different and I think the organization of the conference was looser than I was used to. For example, I missed giving a presentation while visiting the vendor area. The problem was that no one told me I was to give a presentation. Other than that, the people were very nice.
Gretchen: Do you have a special routine that’s strictly for when you are traveling or is it entirely different for each trip?
Stephen: Well, it usually starts with packing the night before. It’s not a frenzied packing but it’s because I’ve packed so many times that I have got the routine down that I can pack for an international trip in about twenty to thirty minutes. It’s really just a matter of applying the formula of days spent traveling plus one in terms of quantity of clothes. Being an international trip, it’s probably going to take all day to get there so that’s one change of clothes (the clothes you’re wearing) plus however many days you’re there (such as five for example) so you need five sets of clothing and then it will take one to get back and then it’s going to take one day to get back (so that’s the sixth) and then I have a seventh in case there is an unexpected delay somewhere. I also make sure that I don’t check baggage and it’s all in the carry-on. If it doesn’t fit in the carry-on, it doesn’t go.
Gretchen: What is the biggest lesson you’ve learned from traveling to so many different states and countries?
Stephen: The biggest lesson is that autistic people are the same everywhere you go. I’ve also found that parents, teachers, and others who support autistic people all want the same thing and that is to increase quality of life and reduce suffering.
Gretchen: How is traveling a different experience when it is for business/work vs. for fun?
Stephen: Well, almost all of it is for business but then again traveling for business which is speaking at conferences is fun so it’s kind of hard to differentiate between the two. But, I guess, the few times I’ve traveled when I don’t have to speak at a conference, it will be with my wife. I think they call that a vacation. It’s fun to do too. Certainly, more time to explore the country and learn more about its culture.
Gretchen: What is your favorite part about traveling around the world? What is your least favorite?
Stephen: Favorite thing is flying in airplanes, exploring new cultures, and meeting new people in the autistic community. My least favorite thing is when I need to be in two places at once because if there’s something that needs to be done at home and at the same time I’m traveling or if two conferences want me to speak at the same time and then I have to choose one of them and I would really like to speak at them both.
Gretchen: What advice would you offer our readers who are going on their very first trip away from home in terms of what to pack for coping tools?
Stephen: If noise is bothersome, then earplugs or noise cancelling headphones especially if you’re going to watch movies from the entertainment system on the airplane or on your own computer or iPad. The headphones you bring are much better quality than the ones that they give you on the plane. Planes tend to be noisy, so if you use regular earbuds, you have to turn them up so high that they will hurt your ears because you have to overcome ambient noise. For those who like to sort of settle in and sleep, a window seat is good. It’s also interesting to look outside and you have something to lean on when you sleep.
For those of you who need to get up and walk around or go to the bathroom frequently, an aisle seat will be better. Bringing a small weighted object, like a very small weighted blanket, (or something else that’s kind of heavy) can be calming as well but it’s important to keep in mind the weight restrictions. So that can be a challenge. It’s always best to bring clothing that doesn’t need ironing. If you need to iron, you can take a nice hot shower with the clothes hanging in the bathroom to steam out any wrinkles. Reducing the number of shoes to as few as possible saves a lot of space. It’s also possible to buy things cheap if you didn’t bring enough of them or you could wash them in the hotel room.
In November, I will have traveled to Italy, my 50th country to talk about autism. My international travels have taught me that autistic individuals are the same no matter where I go. While it is very exciting and rewarding to travel especially international to see how autistic individuals are supported, there can be great challenges to get around – especially when irregularities occur in foreign countries.
Getting through challenges just requires patience and, at times, some divergent thinking.
8 MORE TRAVEL TIPS FROM STEPHEN SHORE
- In the air: keep within the confines of your seat to avoid bothering other passengers. While you may feel a need to rock, hum or otherwise stim for self-regulation, do your best to find alternative means of doing so such as a therapy ball or other quiet fidget devices.
- When in the airport, pacing whilst awaiting in long airport security lines causes suspicion in airport personnel.
- Visually fixating on the overwhelming stimuli in airports can make fellow travelers anxious.
- Monitor the time so you don’t miss your flight!
- When travelling internationally – especially when you don’t speak that country’s language – make sure the host meets you at a designated place in the Arrivals hall holding a sign with your name. Similarly, having someone meet you when flying domestically is helpful as well.
- Delays, cancellations, and other irregularities are becoming the rule rather than the exception in aviation. Chapels, unoccupied gates, and airline lounges (for a fee though) can be great for getting away from the noisy hustle and bustle of an airport.
- Avoid renting a car as there can be long delays in obtaining a vehicle which often requires taking a shuttle from the airport. At the end of the trip, allocate additional time for a potential slow return of the vehicle and shuttle ride back to the airport.
- Use only carry-on luggage where possible. This saves time checking and retrieving baggage as well as eliminates the possibility of the airline misplacing your bag. BONUS: Because of the rule that a passenger’s baggage must travel with them, a checked bag often constrains a passenger from jumping on an alternative flight when scheduling irregularities occur.
Read more articles on “Traveling the Spectrum Way” in Zoom Autism Magazine, Issue 16:
- From Our Editors: Keep Exploring! Traveling the Spectrum Way
- I Did It! How I Planned My Independent Travel by Erin Clemens
- On the Road! Traveling Outside My Children’s Comfort Zones by Katie Dyer
- Traveling to the Czech Republic for Autism Acceptance by Rachel Barcellona
- Cummings and Goings: Many Views for Traveling on the Spectrum by Conner Cummings
- How I Braved 70 Travel Hours with Sensory Success! by Gretchen McIntire (Leary)
- Why Our Family Takes the Same Trip Every Year by Megan Amodeo
- The View from Here: Autism and My Cancer Journey by Douglas Sparling
(Includes updates from Jacob Fuentes (College), Carly Fulgham (motherhood), and Anita Lesko (Career)
Discover more Zoom Issues:
- Issue 13: Family
- Issue 14: Trailblazers
- Issue 15: Powerful Women
- Archived issues on the Zoom Home Page
- More autistic-written articles and author interviews on our blog