“Stay off the Grass”

Recently, at a track, I was walking alongside the track on a curb when a track vehicle drove by and stopped at me. I looked in as they rolled the window down and the driver shouted, “hey, how about you stay off the grass?” I looked down and saw I wasn’t on the grass so I was about to argue the point, but then the car drove off. 

I was confused. I wasn’t in the grass, and when I looked at the grass the grass was, well, it was dead. It was all dead. Why would they tell me to stay off a dead patch of grass when it was primarily hard soil?

When I got back to my coworkers I mentioned that they wanted us off the grass which resulted in some laughs. They looked at the grass and said, “what grass?” I was perplexed.

A lot of us on the autism spectrum struggle with humor, and this turned out to be a joke which I didn’t understand. Each day can introduce a challenge for those on the autism spectrum for two reasons. The first, as in my example, is not understanding that it was said in jest. Secondly, a person could think something was a joke when in reality it was not. 

It seems obvious after the fact, but the extra processing time requires an answer before understanding is in place and by trying to avoid the social error we commit a social error. For others, this understanding of joke or not a joke is more ingrained, but for us on the spectrum, well, next time you hear a comment like the one I explained today I’d like you to think about how difficult it would be if you didn’t understand if something was or wasn’t a joke, or was or wasn’t a command. 

Post from the Past: The Usher vs. Aaron

This was from 2010 and I still remember this vividly…

Last Friday I went to my very first NHL game and for the most part it was great. The sounds of the game in person is something that one can't appreciate at home. The sounds of the blades on the ice are so sharp and crisp, the sound of the bodies slamming against the boards is enough that you can feel the pain, and the sound of the pucks hitting the sticks is nothing short of awesome. However great that experience was was I had a moment of my own in the 1st intermission that over shadowed the night.

What happened between the 1st and 2nd periods is a classic example of something that would, for most people, be minor and a non-event. For me though the anxiety is still with me like it just happened.

Yes, I can see how this event wouldn't be remembered by most people. I'm not like most people though. What happened was this: Between periods I was craving nachos and a soda. I waited for the lines to thin out somewhat and went with 6 minutes to go in the intermission. The price for nachos and a soda came out to $13.25! For what it is worth though there were free refills on the soda. With soda and nachos in my hands I proceeded back to my seat. This is where the usher enters our story

As I walked from the concourse through the small tunnel like chute to the inner arena I had my eyes locked on my seats. Walking amid a group of people that are coming and going is always a stressful experience for me so I have to keep my eye on the final destination. If I look at my immediate surroundings I may make eye contact or look at someone in a wrong way (don't ask what a wrong way is as I'm not sure what it is, which is why I try to avoid it). That being said I keep my eye on the finish line.

I passed the usher and was just about to go down the stairs towards my seat when all the sensory alarms went off in my body. It wasn't much as it was just a tap on the shoulder, but the sensation of touch on my shoulders is considerably higher than anywhere else on my body. To put lightly, unless I know the person and it is expected, any touch on my shoulders is something I would avoid at any cost. A tap on the shoulder is like being tapped everywhere on my body all at once and that is a lot of information to process.

I was set on my destination and this tap threw me off. So much so that I nearly took a tumble down the stairs. I was startled, and processing what just happened and thankfully I was stopped by the railing that goes down the middle. What was the meaning of the tap on the shoulder? She needed to see my ticket.

My senses were violated because she needed to check my ticket even though she had checked it before the game. Okay, so maybe she didn't have a good memory, but I'm still a little irked of the end result that happened. Sadly, the bout wasn't over.

She needed to see my ticket, but my ticket was in my pocket and I had both hands holding the drink and the nachos. I was in a startled state, and I realize now I didn't vocalize anything after being startled. Truly I didn't say a word as I was processing so much information that the actual world took a back seat to the anxiety of my body.

I was unable to say "my hands are full" and I started a small dance to try and illustrate this. I looked at my left hand, then my right, then my left, then down towards my left pocket, and then she said, "I'm sorry sir, I can't hold your drink". I was now lost. I had no idea what to do. What I wanted to do was teleport back to home and go to bed and never leave my bed. Being flooded with so many issues is a short amount of time that I couldn't foresee was just awful.

I started to have this odd jerky motion and I was filled with nothing but rage. Pure rage. The rage had no direction and wasn't towards anyone as I was just confused and scared. I didn't know what to do nor could I fully comprehend what was expected of me.

Finally, someone walking by asked me if I would like them to hold my drink, so I handed it to them and showed the usher my ticket. With drink in hand I made my way towards the stairs with the goal of sitting in my seat and slowly venting this anxiety and anger out of my system.

It happened again. A tap on the shoulders and again I nearly took a spill. "Sir" she said, "You can't go down the stairs and you must remain behind the blue line until play stops. Just as I began my trek towards my seat the 2nd period began. I heard her words but nothing made sense. Being tapped on the shoulder once is bad, but a 2nd time, after a tense two minutes was too much.

I just stared at her in befuddlement. She repeated her line and I slowly comprehended that if she had not put me through two minutes of torture, I would not have been in violation of crossing the line while the puck was in play. I was angry and confused.

While standing behind the magical no cross blue line I began to twitch. My rage was at my personal limit. The sensation of the tap to the shoulder would not go away and I could not comprehend why the usher was doing her job.

As my luck would have it, several minutes went by without a stoppage in play and I stood there shaking. All I wanted was nachos, a drink, and to return to my seat in peace. Something simple that most people could do without an event. My event I endured was worse than any fight that happens on the ice (I don't understand why they fight in hockey by the way. Hockey is a great sport, but the fighting just is so out of place).

With a stoppage, finally, I returned to my seat and slowly got my bearings. It's an event like this that I fear each and every day. If you aren't on the spectrum I don't know how you will understand this story. Perhaps if I tell you that I am teary eyed right now talking about this because it strikes fear in my heart. Pure fear. I don't know when an event like this will happen nor will the person that creates it know what happened. I can't blame the usher (I want to, trust me) for doing her job. How can one expect that a tap on the shoulder could have such an impact on a person?

Trying to operate in a world that can't foresee such impacts is difficult. I don't have a big "Don't touch me here" sign. I don't have a sign that says, "Don't interrupt while walking".

It's hard. It's a challenge. Life is nothing short of a fight and most times people don't know they started one. I don't fight with them though, it's a fight with my own mind and senses. It's because of this I hesitate each time when leaving the house.

The world is a dangerous place and is filled with many events that will prove to be hazardous. The problem is this; what is hazardous to me is a non-event for most people. People will put me in these positions and not even know it. The usher couldn't have known out much pain this would've caused me, and I don't think she ever knew. I kept it internal except for the shaking.

This event evoked a sense of fear I haven't felt in a while. This "usher vs. Aaron" event was something far more dramatic than two goons on the ice trying to punch the other guy's face in. My fight, that I think about each day, is about the battle of overcoming the fear of every day life. When will the next battle be? How bad will it be? Will I endure it? These questions I ponder each day, and this bout with the usher has me second guessing myself.

I'm here in the office though, I got out of bed this morning and life continues on. I'm fearful, but I won the fight. I fear the next one and wonder if I will overcome it, but how will I know if I will or won't overcome it unless I try? For this I play on.

Every day...

 

Every day I worry if this will be the day other’s will see through my chameleon ways. It’s one of my greatest fears. Every day is a battle to ensure I’m always in a position of safety; a position that will prevent a sensory issue, or an unexpected social situation.

It’s difficult for me to understand how other’s not on the spectrum go through their day fearless and not calculating all the possibilities that could lead to the situations I want to avoid at all costs. The liberation of that concept is impossible for me to conceive. So too, I expect that those not on the spectrum can’t fathom or appreciate just how draining it is.

Truly, it’s the essence of my being. All that I do in most situations every day is aimed and keeping the proverbial ship afloat. If you see me in person in an open environment, you can probably witness the magnetic repelling that goes on. As I walk near a person, my eyes as repelled from their eyes and my arms will naturally fold away from them. As I walk by my neck will lean away from them as I try to slither by unnoticed.

Every day I worry about the unknown. If you can, watch my eyes in a situation that may involve a sudden loud noise. When I walk past a fire alarm, my eyes focus in on it with a sense of dread awaiting the blaring of sensory knives to my body. Or, if a semi-truck drives by slowly, I’ll await the sudden blast of the horn that is an adrenaline tsunami inducing event.

Yes, I don’t know if you can appreciate the courage it takes to leave the front door, nor can I imagine living in the world without this constant albatross of pure dread awaiting the next time my autism becomes obvious.

I know with every day that passes people become more and more understanding of the autism spectrum, but if I retreat from a loud noise with haste, I still worry how that will be perceived. Will it cost me a chance, a friendship, or most of all I fear having to have a conversation about it. In these situations, the last thing I want to do is explain what happened and why it happened. Every day I dream of the day there’s no need to. I dream of the day that I don’t have to look at people in fear on how they might be mad as my body is metaphorically magnetically repelled by them, or the fear of the random sensory event.

Every day I’m exhausted by trying my best to hide what my body wants to do. No matter how much I write, you will more than likely never understand the level of exhaustion experienced by those on the spectrum unless you live it. However, I keep going. As dire or catastrophic as my words may seem in this post, every day I keep going. I put myself in situations that surprise even myself. The world is just too grand, too awesome, and too interesting to not. That’s why every day I wonder how to increase the world’s level of understanding. There are millions of others like me out there that will look at the sensory element they loathe. There are others that will do everything they can to avoid any social encounter. I’ve had awful social encounters due to autism, but I haven’t let it deter me from seeing this world and continuing onward. With no understanding, another person may think that every day is impossible and that each day they leave home they will have nothing but heartache and pain. It doesn’t have to be that way though. Understanding is the foundation for hope and yes, there’s a chance a person can be nothing short of a jerk, and there’s a chance that fire alarm will go off, but understanding of sensory issues, and autism exhaustion/burnout, may just be that little bit to keep a person motivated in seeing all there is to offer in this wonderful world and avoid the pit of thinking that every day is hell.

Memories of Nintendo Power

I became a subscriber of Nintendo Power in 1991. It was absolutely awesome to have a magazine come to my house, at the age of eight, and each month I awaited in anticipation for the arrival of that's month's edition. I mean, my parents had Newsweek and I had Nintendo Power.

In my room I had a cabinet that I would place each month's magazine so I have every issue so as I opened the box that had all the issues I was able to go back to those days in 1991. My first thought was, "wow, gaming has come A LONG WAYS!" as there's a preview for Bill Elliott's NASCAR Challenge. To think racing games went from that to the graphical bliss that Gran Turismo is or the realism and structure of iRacing, back then, would be impossible.

This trip to the past was more than just about the games as it took me back to those places and times. The games that were previewed back then that I got I remember getting. In that first issue there was a review of the game Monopoly for the Nintendo. I remember my parents getting me that game. It wasn't on the most pleasant of occasions as I noticed the game under my dad's seat in the car. I didn't mention anything about it because we were on the way to the hospital and I was about to have my tonsils removed. I treasured that came ever since, up until early 2009 when I sold my NES and the 80 games I had because I needed the money to pay my credit card bill.

Another thing that I remembered was, as I mentioned, the anticipation each month for the issue to come in the mail. As the end of the month approached the last few hours of each school day felt like years as, once we were released, I'd run home (I only lived three blocks from school) to either find utter disappointment of sheer elation. That's one thing that I don't think anyone today can feel. What I mean is, think about information on games or anything. Why wait an entire month for reviews or information on games. One can go to ign.com or metacritic and get as much or as little information as they want when they want it. I don't know if this is good, or bad, or either, but there was something about being able to hold the magazine and feel the materials of the magazine.

As I went forward in time and I got to the time that the Super Nintendo was released I went back to that era. Of all the systems that have been released I was most impressed with the Super Nintendo. From Super Mario World, to F-Zero, to SimCity and Pilotwings, I had seen nothing like it. It also probably didn't hurt that it was a birthday gift, but I felt a strong sense of happiness and sorrow all in one. Happy for the memories that were, but sad in that these memories were from over 20 years ago and yet, for me, it felt as if it were five minutes ago.

I eventually got to the issues of the N64 and that era, for me, is one that I don't fully remember as vividly as the previous. School was getting near impossible for me and no one knew why I was different. There was one issue that I won't forget and that is issue #110. Five months prior there was a challenge for the "highest scores in one round on Wheel of Fortune 64." To do this one would get a high score, take a picture (with film and have it developed. Remember those days?) and then send it in. I came up with a slight "trick" to do this and I ended up with the 2nd highest score with the winner doing the same trick as myself, just a little bit more (I didn't want to make it too obvious, the winner did.)

In the end as I scanned my final issues, which was in the 2002 year (Nintendo Power's last issue was December 2012) and I went back to the beginning and noticed the letters section and that did it for me; I was now overwhelmed. Looking at the names of those that wrote in, and some of the pictures of kids dressed as Mario and, well, I felt a wide array of emotions as I wondered who those people are now, what they're doing, and what type of life they've had. It's an odd feeling, it truly is, to be overwhelmed by such a thought like this for people I've never met, never known, and will probably never meet. Perhaps this all was all due to the fact that I don't like change, I struggle with accepting the passage of time, and what more could possibly show all this than being able to go back and visit the past in the form of a magazine. You see, websites can be updated; heck, I can go back and edit any of my blog posts going back to the beginning. My blog has also had several different looks to it over the years and for many people I'm sure web browsers have changed, monitors have changed, but for those magazines, they are like they were on the days I first got them in the mail. The world has progressed, time has moved on, but for a magazine they are frozen in time, and forever will be, and there's something special about that. This is something that, maybe in 100 years, will be unheard of.

Ghosts of Friend's List Past

Of all the misconceptions about the autism spectrum that are out there, the one that gets me riled up the most is that we don't care about others. I know that, for myself, I do but it looks a bit differently than the way others show it. The proverbial ice takes much longer to get broken than others, but once it is, I usually will remember a person forever and there's nowhere this is more obvious than my Xbox friends list.

It's been amazing that, the sophisticated the Xbox Live service has become, the more solitude it seems is out there now. Also, people's attitude are much worse than when I first played online in 2004. However, as I glance at my friend's list, I am reminded of people I played with for years, and others that may have been just one evening. 

There's a gamertag, Prognosis, that I remember vividly. It was February 2006, and we played a ton of Halo 2. He was a doctoral student at IU, and we played with his girlfriend and another friend of theirs. I don't know how I got into a party with them, but the evening I played was the eve of my trip to Madagascar and I was trying to adjust my hours so I could sleep on the long flights. Anyway, we had deep discussions about life, travel, Africa, Halo, and as the sun came broke the horizon, they were done with their all-nighter and went to sleep. When I returned from my trip, their accounts were offline and have been since then. It's amazing how one evening of conversation can stick with a person, and it's been 16 years, but I can't delete them off my list because, in a way, that would be the deletion of their memory.

I have a former coworker from GameStop, the person I first added to my friend's list, dozens of people that I raced for years and years, and several that I've met in person. Each, however, mean so much to me. When I first played online, I did everything I could to maintain anonymity. I played to win and nothing more. Slowly, I opened up and with each friendship developed I learned something more. These aren't just random names on a list to me, but rather a deep meaning of progress, friendship, and competition. 

It's a unique thing, I think, that I'm able to see each person I added. Well, think of the people you worked with and were cordial with, and perhaps there's a person you've tried to remember their name that you worked with 20 years ago. With a list like Xbox has, you'd always be able to recall the name. This, though, leads to the "whatever happened to..." questions. There are many ghosts on my list that may never reappear. For most, gaming with a random person is just that, random, but for those circles people invited me into, those days were special. I think over half my lists are now ghosts. I'll never know what happened to most of them, but they'll also have no idea how much it meant to me and my development to have been included in what may have been just one evening of Halo. Yes, there's a misconception out there that those on the spectrum don't care about others, but for myself, I may be delayed in picking up on social cues, and maybe delayed in offering support when a person needs it, but those that I've come across mean so much to me I can't even delete their name off a list I have, even if they are a ghost of the past. 

Up in the Stand

 So Friday’s post mentioned I was going to be in the place where it all made sense. here’s a video to show just how much it does.

The Silent Scream

In a little over an hour, I’ll be in the flag stand at WorldWide Technology Raceway in the position I feel most comfortable. The NTT INDYCAR Series is racing here in Saint Louis this weekend, and when I’m up in the stand with flags I must say everything feels right. There’s no hesitation in my thoughts or words. Contrast that to most every other situation. 

“What do you think?” the person asked me. I looked through my reflective sunglasses attempting to come up with an answer that I knew I knew. “C’mon, Aaron” I thought, “I know this. He knows I know this. Say… something.” 

On the outside I’m stoic, maybe aloof looking. Perhaps a person would take this as a sign that I didn’t here the question, or perhaps that I don’t fully care about what was asked, but behind the blank wall is a storm.

What started out as a simple “C’mon” quickly avalanches into a full scale panic. On the outside though, you wouldn’t know as the internal dialogue picks up in volume and intensity. At this juncture, if the other person asks a different question I may snap back at them. It isn’t a snap at them though, it’s that I’m overwhelmed trying to come up with what I know. 

“ANSWER… ANSWER NOW!” is what comes next. If you know what to look for you may be able to see the eyes dart quickly, my arms tense, and my breathing increases. It may have been just mere seconds since I was asked the simple question of “what do you think?” but now all I’m thinking is that I have to give an answer… any answer. But, with the crescendo of the volume of my thoughts and panic on not answering I become even more powerless to give an answer. 

Finally, through the volume of the fog, I find an answer. It might not be right, but it won’t be wrong. Such an answer is “I’m here” to the question “how are you?” 

If you ever see me in a crowd, watch me as I try ti avoid the bubble around people. I try to be a chameleon; invisible to everyone. People have asked why this is, and now I hope you have a bit more understanding as the unpleasantness of the silent scream is such that I’ll try to avoid it. This is why we on the spectrum rejoice when we are in our element, such as I’ll be in just a short while, with flags in hand, on top of the world. 

My Worst Date

It was 2006 and I decided to try dating again. It had been just over two years since my breakup with Emily, which is the story at the start of Finding Kansas, so I was ready to tempt fate again. Fate had a lot more in store for me than I bargained for.

Thinking back to then, it's hard to remember just how difficult it was to tell a person that I was on the autism spectrum. There weren't shows on television with characters, and the thought of a Netflix show being an international phenomenon such as Extraordinary Attorney Woo was not even in the realm of possibilities in the best of imaginative worlds.

This date, I met her online, and she was a chemical engineer with an awesome job. We chatted for a couple weeks, and we had dinner planned at an Olive Garden. The initial pleasantries came and went, and she asked me for more detail about me saying I that I was writing. This led to talk about the chapters I had been writing and this, of course, led to the talk of Asperger's.

I held my breath each time I told anyone this because, and do remember this was 2006, people generally didn't know what Asperger's, or the autism spectrum, was. Maybe they had heard of it but had no frame of reference on what any of it meant. 

It was always a hold my breath moment. Would they ask, "what does that mean?" or the "my great uncle's third niece's mother's friend's teacher's son has it, I think." I wasn't sure yet which I loathed more, but I knew people didn't know what it meant. However, this person did "know".

"Autism spectrum?" she said with a raised eyebrow, "Oh, I know, that means you're unable to care or love anyone else, is that right?" I now knew what I hated the most, misconceptions. It was bad enough I had endured the horrible information on the night of my diagnosis, but this? How was I supposed to deal with this? It's one thing to have negative self-talk, but to have another person so blatantly say a mistruth as if it were as holy as a religion was crushing.

Needless to say, there wasn't a second date, and since that day I told myself I would wage a fierce battle against such misconceptions. There are now a multitude of shows depicting individuals on the autism spectrum and the understanding that it is, indeed, a spectrum is becoming more and more prevalent. I hope that 16 years from now, misconceptions are a thing of a bygone era. It is difficult for me to think back on the fear of a person never hearing of the autism spectrum, but now that's not as big of a concern. 

Maybe this date was ahead of her time. The battle now is with such wrong misconceptions. To have a belief as she did guaranteed the outcome. If you tell a person they can't, or that they'll fail, or that they shouldn't even try will almost ensure that outcome. My hope is that there won't ever be a situation like that Olive Garden visit back in 2006, but I know there will be. There will always be confusion and an air of mystery over something as mysterious as the autism spectrum, but all we can do is try, and not let the misconceptions define who we are.

Other People's Anger

I’m afraid of disputes and arguments. I’m going to guess most people would shy away from a tense confrontation, but probably not for the reason I do. In my eyes emotions are extreme. This means that there isn’t varying degrees of anger, happiness and hate. If someone is angry that means they want to kill the person they are angry with. I can’t see that someone can be partially angry and just want to have a stern word with whomever they’re mad with.

            Living like this is hard! Each and every day is a potential explosion in my eyes. If I see two people angry with each other I instantly think that I’m about to witness a 21^st century rendition of the showdown at the OK Corral. Is this normal?

            I’ve felt this way as far back as I can remember. In school I tried to be as bland as possible to avoid any chance that I would make another person mad. At this point in time though I don’t think it was going to involve guns, knives, and perhaps a pipe bomb. At the early school age though I was worried about fists, kicks, and yelling which, for someone in 1^st grade, is just as scary as guns.

            Looking back I wonder if this extreme misinterpretation of other people’s emotions was one of the leading causes of my unusually high anxiety level. Each day was like crossing a barely frozen pond just waiting to hear the crackle of the ice that’s about to break. For that person crossing the pond the stakes are life or death. I saw it this same way for me.

            To witness an argument, regardless of what age I am talking about, is very traumatic. My fears jump to the worst case and I prepare for an all out brawl. All this thought and all this fear is just downright tiresome! I have yet to see the all out brawl occur, but I am 100% confident it will happen each time I see an argument.

            The underlying problem is a complete lack of the knowledge that emotions are level based. For me, screaming equals the desire to kill; therefore if I see two people yelling at each other they both want to kill each other. I don’t experience this because I realize within myself there are levels and I try not to allow myself the option of ever being mad or angry at another because that in turn will make them want to kill me. I know I’m using extreme words, but that’s how it is. Every person is a stick of dynamite with a quarter second of fuse left.

             I don’t know where this view of the world came from. I haven’t seen the extreme case happen in person… yet. Could this simply be that because I am unable to sense any emotion from someone I have to go with something that is on/off? I can’t judge the depth of anger so I must assume it’s the deep end. Whereas the person who is mad may be a depth of 2ft out of 10ft I see all anger as either none, or 10ft. Perhaps this is so.

            What gets me though is that even though I have yet to see a situation go nuclear, I still think each case will. This is what made me a good race director because when anyone was mad with my call I did everything in my power to convey a sense of calmness because, even though I have no intention of the extreme option, I assume everyone has that same extreme sense of other people’s emotions. This means if I show anger the other person will think I want to seriously harm them. Because of that I always stayed super calm and had an understanding façade even though I was waiting for that 9mm to rear its ugly head.

            As I think about this I believe this concept if more than just a misunderstanding of anger. If I am to show any interest, like, or dislike on any given item then that means whomever hears or see this will assume that I am 100% committed to it, in love with, or complete hate with it. Since I see other people in an all or nothing fashion I believe that they do this to me; therefore I have to avoid any emotion whatsoever to avoid a misunderstanding.

            I simply wanted to state the fact that I don’t see other people’s anger in levels as it could be lukewarm, mild, extreme, boiling, and full of uncontrollable rage. From that attempt to state that I think I’ve uncovered why I try to be blank in public. Any emotion equates to full emotion and full emotions are usually bad therefore I must not be bad. Wow, impressive! Um, well, I guess this isn’t bad (must not show emotion, must not show emotion, dang, too late!)