My Japan Experience: An American Autism Self-Advocate’s Adventure


My Japan Experience: An American Autism Self-Advocate’s Adventure

By: Emily Starnes

I love to travel!  I have had the great fortune to journey to over half of the states within the contiguous U.S., stepped over into Canada for a trip to Niagara Falls, and toured several countries in Western Europe.  Then this summer I had the pleasure of spending time in Japan. On top of all this, I also happen to have a dual-diagnosis: a genetic condition called Sotos Syndrome and mild Autism (Asperger’s Syndrome). 

Experiencing Japanese culture first-hand and studying abroad have been two long-term goals.  It just so happens that these two dreams perfectly lined up last month during a three-week study abroad program with the University of Georgia’s College of Public Health and the Institute of Human Development and Disability!  The main professors involved with both organizations allowed me to combine my graduate coursework, which I chose to focus on Japanese aging and disability issues. 

Now, with all that information, you might have an anxiety moment and/or burst of inspiration thinking about your own travel dreams.  While my condition might be mild compared to other disabilities, there was still plenty of work that needed to be done to realize those goals.   Before getting on the thirteen-hour-long plane ride to the Land of the Rising Sun (by myself!), my family and I made sure to have all the necessary documents and plans in order well in advance. 

Thankfully, my family provided an ample supply of help.  In fact, my younger brother has much more significant disability challenges, and he also went on a study abroad trip to Japan back in 2016.  So he and my parents knew the ropes, and had useful nuggets of wisdom to share, along with what I gleaned from the lead professors and my own research:

  • Dress in layers
  • Wear comfortable, easy-to-remove shoes
  • Take more photos than you think you will ever need
  • Talk to as many locals as possible
  • Learn what to do in emergency situations
  • Stay with at least one travel buddy whenever possible
  • Download helpful apps before leaving the U.S.
  • Take small gifts to share with your new friends
  • Learn some of the language – even knowing how to say “hello”, “thank you” and “good-bye” in Japanese goes a long way!

The other main things my family recommended were to stay careful and organized throughout the trip, be on my best behavior while experiencing Japanese lifestyles, and try not to feel too nervous or intimidated by the unknown.  The last bit of advice especially hit home, since I sometimes get a little overwhelmed when dealing with unfamiliar places and situations.  Honestly, I think that comes with the territory of both my autism and general over-thinking.  Another suggestion was to allow myself to take in the experience in full and try to override some of my minor sense aversions – to see, touch, smell, taste and hear all that I could, which would enhance the in-the-moment experience and solidify it in memory.

However, after I said a little prayer and gathered up my courage and adventurousness, I felt much more stoked about going to Japan and crossing it off my bucket list!  Although I almost got lost on the JR rail system the first day traveling from Tokyo Station to Washizu Station in Kosai, I would not trade the memories and relationships from this trip for anything in the world.  Not only did I have the wonderful chance to compare Japan’s and America’s health systems and disability issues, I also formed friendships and connections that will hopefully last a lifetime! 

I hope to return to the island nation some day in the near future.  From shrines and temples to karaoke and amusement parks (and so much more!), I personally believe Japan has something for everyone.  It might take some time to adjust to the culture at first, depending on your personality and disability.  However, once you learn to go with the flow and adapt (Google Maps and Google Translate helps!), you will most certainly enjoy yourself. 

Happy travels –良いご旅行を (have a nice trip)!  

Emily with students and faculty from University of Georgia and Shizuoka University of Art and Culture at a party in Kosai
Emily with students and faculty from University of Georgia and Shizuoka University of Art and Culture at a party in Kosai