“Well there is a show called that on TV.”
“Do you want to check it out?”
This all took place awhile walking around in a space similar to what I imagine the brainspace of an ADHD 8 year old boy looks like; a Sega themed amusement park in Japan. I was currently venturing with another student from my College because we had a free day and this sounded like an interesting side trip. Located at one end of a giant mall in the town of Odaiba, Joypolis is filled with lights and sounds not recommended for anyone with a seizure disorder. There were floors of arcade games, rides, some interactive activities, and lots of colorful game-console-themed decorations. Almost of the attractions requiring active comprehension, like a 3D Sonic the Hedgehog movie, had English subtitles. It didn’t matter if the arcade games were only in Japanese because some things like “Whack-a-(insert random character)” or any racing game is pretty universal.
This brings us to one of the ‘interactive’ attractions, ‘Prison Break’. Now the person I was venturing with spoke a little Japanese. She was able to understand the ride guides who warned us this attraction was only in Japanese. I, on the other hand, did not speak Japanese beyond knowing the names of my favorite Ninja Warrior (Sasuke) contestants. They let us join the queue for the ride after we assured them our language barrier wouldn’t be a problem and we’d still enjoy the experience. When it was time for our group to go into the ‘attraction’, we had no idea what to expect because we had no idea what we agreed to. (Author’s Note: If you can’t tell by now the ‘no idea what I’m agreeing to’ thing happens to me more than the average person.)
Our group consisted of us, two girls from a small college in Iowa, and four other people who were Japanese. We stood along a fake barbwire fence as the leader, a man dressed in a grey prison uniform, told us directions. I’m also pretty sure he was telling us a story at one point because he became very animated. I tried my best to pick up some keywords, but he registered my confused expression and came to talk to us. Our conversation took place with pantomime and what simple words we could share between the language barrier. Instead of the detailed description given to the others in the group, our explanation of the attraction was pretty much “Follow and be quiet.” As the person unofficially voted ‘Most Likely To Not Understand Anything Going On’, I gladly took my position as the last person in the single file line walking into the next room.
The next room began the ‘Prison’, a darkened labyrinth scattered with jail decorations straight out of a Halloween store. The path was dimmed but I could still see everyone in our group, including our leader. I paid attention to everyone ahead of me and copied what they were doing. We moved down the hallways braced against the walls in exaggerated creeping motions. After each turn, our leader would turn around and talk to the group. Sometimes this would be about jail obstacles that were clearly obvious and easily comprehended by even…well…me. Other times I believed he was explaining the story unfolding because there were no visual hints to what he was talking about. Everything was going smoothly, as smoothly as pretending to escape a jail while not comprehending any verbal instructions can be: Until we reached a block in our path.
This ‘Block’ was a dead end of sorts and made us turn back in the direction we came from. So we all turned around as the leader went to the ‘new’ front of the single file line. This lovely little turning business meant I was now directly behind the leader at the front of the line. We continued to sneak along the walls until we came to a giant open room. With a serious expression on his face, the leader turned and gave us directions. Now he could have been telling the others about his very uncomfortable underwear he had to wear today because it was laundry day and nothing else was clean: I had no clue what was going on as he walked on. I knew the game was “follow the leader”, something children and ants do on a daily basis so I continued to follow him into the room.
Very quickly there were spotlights in the middle of the room focused on our fearless leader.
And me right behind him.
Not everyone else, just me.
Apparently the serious face was not about his underwear choice but actually instructions to wait at the edge of the room while he “went ahead to make sure it was safe”.
The colloquial abbreviation FML seemed very appropriate at that moment.
Quickly processing what was going on, I raced back to the group. The group was entertained by the HIGHLY exaggerated motions of our leader as he tried to dodge the spotlights while comically avoiding the ‘bullets’ dotting the wall around him. No one could see my face burning with embarrassment at not understanding the simple directions everyone else understood clearly. After it was ‘safe’ to pass, we quickly moved on to the next hallway. A voice sounded from a speaker as a dummy in a electric chair twitched and howled in pain. We ran out a set of doors and we were ‘free’.
As social creatures, we tend to fixate on language when we communicate. How many times have you heard a person said they were concerned they had “said the wrong thing”? There are right words to say in certain situations and to certain people. People would also agree that there are also totally wrong things to say in certain situations. Care to take a guess what a person with a disability characterized by difficulties with social interactions does on a semi-regular basis? If you guessed “say the wrong thing”, you should pat yourself on the back.
I can say with complete authority that 92.4% of my anxiety comes from social interactions: specifically being misunderstood or misunderstanding people.
I grew up being misunderstood from a young age. It was not just others who didn’t understand what I was trying to communicate, I didn’t know how to verbalize what I wanted to communicate! So it began with colors. Colors were emotions. Emotions are those things that make your face move in different ways to match the feelings in your stomach. This is how a child with Autism learns to communicate with the world outside of our head. We assign invisible labels to everything while cross-referencing, cataloging, and storing for later use. Every single second of the day begins as a constant struggle between the safe world in our heads and the scary real world where there are so many rules when talking to other people.
As a kid, I hid my Autism by playing a game similar to “follow the leader”; I was an echolalic mimic. Watching T.V. and Movies, I learn not just what people were saying but how they were saying it. I assigned labels to characters and studied the jumbled mess laid before me. Communication was learning scripts of what to say and when to say it. This was what people did, they talked about specific things. As a child, the subject of conversations were limited and the scripts were repetitive. I enjoyed the company of my mom’s friends because they talked about fun things and I got to play with new scripts.
The scripts grew as I encountered more situations and needed something to say. I needed to say the right thing. Life became more stressful as the situations grew exponentially and I had school work to do as well. Somewhere it stopped being about just knowing the words, I needed to learn social cues and body language played a huge part in what was the ‘right’ thing to say. Going to an all-girl High School, I became a constantly anxious about saying the wrong thing. This continued in College when the addition of romance brought communication barriers to a whole new level. The anxiety affected my health to such an extreme degree, I have not really been ‘healthy’ until 2012.
Last year is when I stopped constantly having the chest pains from anxiety. I was hooked up to heart monitors as a child because my panic attacks lead doctors to believe I had a heart condition.
For the first time in my entire life, I did not get strep throat once in twelve whole months. The immunologist said I had my own dormant type of Strep that was not contagious, but only affected me when my body became too overwhelmed with stress. Getting strep happened to me on an average of four times a year.
I wasn’t constantly in pain. My back stopped being tense and my muscles could relax for once. I would grind my teeth so badly from stress, there was noticeable damage and constant jaw pain from the time I was 12 to 17. No more jaw pain and a recovery plan from a dentist with “marked improvement”.
I’d like to say it was years ago, but truthfully it was only very recently I fully understood.
The words you say don’t always matter.
It’s not that you are saying the wrong words, but communication is not as simple as always knowing the right thing to say or understanding the precise meaning of every word you hear. Communication is a very complicated experience involving multiple people with the potential to get things jumbled purely by accident. There are people in my life I can look at and have entire conversations with our eyes. With other people I run out of words long before there is any hope of getting my point across. It’s not that I don’t have to sometimes work to be appropriately social, I just know what scripts to pull out at certain times and I know the times scripts don’t matter.
I’m not going to completely destroy a friendship by accidentally saying something really stupid. I finally gave myself permission to relax an accept that fact. The difference between being alone and lonely is the choice. Having the choice to remove myself from the rest of the world is empowering. Being isolated due to my failing social skills was devastating.
In a different place and time I was a little blonde 8 year old in a sundress walking by a park in Seville, Spain with my family when I saw a group of children playing on the grass. They were laughing and having fun playing the same games I was excluded from on the recess yard. The craving to belong hurt on a level I hope most people never know.
It was my father, a many who to this day doesn’t understand me, who told me to go to them.
“I can’t speak Spanish.”
“They won’t understand me.”
Walking up to the group of ten or so children, they all stopped to look at me.
I heard my heart race in my ears.
My hands became so sweaty that I was afraid to wipe them on my dress so I held them out to my sides.
“Hola” replied a little boy standing closest to me.
“Me llamo Brigid”
“Me llamo Jesus” replied the little boy as he moved to grab my hand.
We played in the park until the lightning bugs came out. Saying “Adios” to my new friends, my family left to find dinner and end our night with our regular walk around the illuminated city. I actually fell asleep in my dinner that night. It was not just exhaustion, it was happiness that overwhelmed me the most. The language barrier between me and the other kids did not hinder me, it made me not worry about saying the wrong thing so I could finally be a kid. A kid like everyone else.