The Struggle

 The funk I was in that I described last week has continued and today it intensified. At the same time I have to mention that the annual "Autism Awareness Month" commences in just a few weeks and I can make a point in what is lacking in that title by the way I feel now.

When I talk to teachers I give many examples of Aspergish-like behavior and by the end of my presentation I'm accustomed to seeing tears as teachers put together the pieces and now understand a current or former student. There is one major thing working against a person like myself with Asperger's and this is there is no visible sign. Look at my pictures, look at my videos, and look at the videos of myself at a racetrack and does anything jump out and say, "autism spectrum"? Unless you were finely trained or knew I was beforehand I'd say most certainly not and therein lies the struggle.

What does autism awareness actually mean? There can be billboards, 30 PSA ads, and radio ads mentioning that autism exists. In my six years as an Autism Ambassador for Easter Seals Midwest I can clearly avow that over 95% of people are aware that autism does, in fact, exist. Okay, that's fine, but to simply know it exists gives no depth to the meaning, the struggles, and what one can do to ease the feelings of a person that's on the spectrum in the midst of a major struggle. This is the dilemma we face; we can shout "awareness awareness awareness" but if we don't achieve understanding it will be all for naught.

You see, and I go back to how I look in pictures and the like, the problem here is the invisible struggle a person may go through. Take a sensory issue. A person that has no sensory issues, if told that a person may have sensory issues, will be about as lost as being in a foreign country with no GPS and no understanding of the language. The road signs are there but there mean nothing and if they mean nothing how can one have compassion, empathy, and be willing to help? Same thing goes with a person that may have issues with crowds. If a normal (remember, I don't really believe there is a normal) person has no issues in crowds how can they understand that the person with them, that looks normal, is going to have an issue? 

I don't believe there is one path to achieving understanding but it is imperative that we shift... no... it is imperative that we blitz the point home. I've spent many nights recently alone at home and it feels very much like the life I led in the 2000's. My ability to write and express myself was born within the way I feel now, but one of my reasons for writing was so that, "maybe the world won't hate me as much." Are those extreme words? Yes they are but that's the way I saw it. I tried and tried in life and things always went askew and I didn't know why. Well, not only did I not know why but those around me didn't either because of the cloak of invisibility Asperger's can hide behind.

I won't lie; the past month has been the hardest I've had in a decade but experiencing this has brought about a focus on the goal line and the purpose to it all. I think of all the police presentations and presentations to teachers and I can't think of an audience more important than those two because they will be dealing with the invisible and unless the canvas is described in a way that is understandable the beautiful artwork that is a person on the autism spectrum is going to appear to be just random lines and incoherent shapes. Of course, this isn't the case but without understanding awareness doesn't allow the canvas to be seen or understood and when this happens the struggle continues onward and no amount of simple awareness will progress us anywhere.

Book Preview: If Kansas Fails

 

I heard, what was to me, a tragedy a couple months ago. This person was describing their stepson who loved basketball and the only thing he wanted to do was to play it. Sadly, he has what I have and, unlike me, has no eye-to-hand coordination. This person was frustrated and said he was constantly telling the kid to give it up and there was no chance he could ever play with anyone because it would be too shameful for him.

Let’s use another example. Every four years, the world turns its eyes on the Olympics (yes, I know it is summer/winter two years apart, but we will just be using the summer games). While the sports of swimming or badminton only get the spotlight every four years, for the athletes competing, it is the culmination of their life’s work. Think about it. For them, they have tried for years, and for most of them they only get one shot at it. If you don’t know, the Olympic team is determined by the trials. What that means is that for the foot races, the top three go to the Olympics and everyone else is going to be watching from home.

If you were one of those athletes competing for a shot on your country’s team, imagine the pressure. Your entire life has come down to that one run. If you run like the wind, you go to the biggest sporting event in the world; should you have any type of bobble, you have wasted years in training and also any chance you had at being on a Wheaties box.

It is sad when people come so close to their dreams, but fall an inch short. I can’t imagine what it is like to be that last person not to make the team. All the training, all the hours, all the sweat was for naught.

For those athletes that fall short, it must be devastating. They put their entire life into something, only to have it fall short. I’m sure you’re thinking I’m trying to get a job as one of those writer’s that do the human interest side of the Olympics, and maybe I should, but I do have a point I must cover before I go on that venture.

Anything I put my mind to is the only thing that matters, as the chapter with that title said. Even though something might last a month, or a year, it is as important as life itself. How then, as that kid that wants to play basketball, can one deny them of it? The step-dad mentioned that the kid knew everything about the history and all the great players and anything about the sport. If something means everything to a person, how can one deny them?

I will say I got lucky that I discovered this oddity that is my writing ability. It probably saved me, as racing was the only thing that mattered. Unlike that kid, I did have talent on what I wanted to do, but nevertheless I was not racing at a professional level. Thankfully no one ever denied me of what I wanted to do on the basis of talent.

I’m sure there are thousands of kids out there like the one whose story I heard. Whatever their Kansas may be, someone is telling them that it is hopeless, stupid, or unattainable. This is nothing short of a tragedy. Even if that kid was horrible at the sport, let him try. Don’t destroy the love of the game. I think the kid was 12, so don’t destroy the sport for him. Perhaps, he will become a ref or a coach of it. Whatever the case, I’m sure, for that one athlete who was one position short of making the Olympic team, they would much rather try and fail than to never have gotten the chance. Kansas may fail, but don’t be the one who’s to blame.

Preview of chapter from my 2nd book

 

 

            I never took high school chemistry, but I have always seen, in television, the art of chemistry performed. I guess the simplest chemical reaction is soda and vinegar. From what I understand when the two are mixed fizzy stuff happens. This is fine and all, but what would happen if, in a normal environment, nothing happened. Let's say you mix the two together and nothing occurs. Let's say you've seen it done 1,000 times, but when you try nothing happens. What was supposed to be a reaction, turned into a big letdown: a chemical inaction. Welcome to my world.

            The key thing here is that let's say you've seen the reaction done over and over, but when you try nothing happens. Imagine how frustrating it must be. All you want to do is get that reaction so you can be like everyone else, but the only thing you get is a lot of wasted vinegar.

            The metaphor here is relationships. I see friendships start and friendships maintained with members of the kart team I travel with. They all joke with each other and it is almost like they are speaking another language with each other. Some slang, some joking words, and it's a language I can't mimic. I'm very precise with my words and can't just, “be free” so this is the start of the inaction and I remain, off in the corner, trying to start the reaction.

            “How is it done?” I often wonder as people make it look so easy. “What do I have to do?” often rings throughout my thoughts. “It looks simple, why can't I get it?” is the way the train of thought always ends.

            I try in the best way that I can to try and get a reaction. There's a block though. It's much like those logic puzzles that are given sometimes, or rather number sequences. Let's use this “4,8,12,16,X” In that sequence 20 would be the logical number to follow, and then 24, but for me the 20 is never there so therefore the rest of the sequence can never materialize.

            I believe the inaction is a two way street. I know I behave differently in public as I look nervous and uncomfortable most the time. This, I'm sure, would create a bit of tension for those around me as they don't fully understand what I'm going through. On the other hand when people do make the effort to try and get to know me all that is allowed is up to number 16, meaning going back to the number problem that I am only programmed to let it go so far. I don't know much about chemicals, as I've said, but it would be like putting very stale and flat soda with really bad vinegar (can vinegar go bad? I don't know much about vinegar either so just work with me on this metaphor and don't get all literal. Thanks!)

            This whole process is very tiring for me because I do try. But with between the coma, the privacy, the fourth wall, and other terms not yet defined how is any reaction supposed to occur? How is any reaction out of either party possible? Going back to the number sequence, using numbers divisible by four; I said mine cut off at 20. To translate that into meeting any given person, that would be about as deep as allowing 4 questions to be asked. If it were a scoring system, friendship would start at 80.

It's rough trying something over and over and always failing. What hurts, what truly hurts to the soul is how easily others can make it seem. How can a person go from bowling team to bowling team year after year and make a new set of friends every year? How can someone just walk up to a person, ask them how their day was and end up getting a new best friend? What's the secret to getting a reaction?

            I wonder if everyone faces this challenge, a little bit. Is it like riding a bike? If so, can I get the one with training wheels because I need help? But maybe my balance won't even be good enough for that. When does attempting the impossible become futile?

I pour away always waiting for that chemical reaction. And you know, sometimes while in Kansas I feel as if I'm close. That further adds to the relevancy of Kansas. The deeper the Kansas, the more I feel as if I'm about to create some fizz and live out every aspiring high schoolers chemists' dream. Perhaps I try too hard, thus making me over think everything and then I look even more uncomfortable. I think anyone would if they saw everyone else easily getting a chemical reaction out of life.

            I think it's a simple wish really; to feel that sense of friendship once out of life. I know I am capable of it, but so far only my pets have given me that feeling. Okay, so maybe I don't know if I can share that feeling with another person. It's sad really, to believe that I will always be in the corner of the room, silent, uncomfortable, and just wondering how everyone else can mix soda and vinegar with such ease and here I am on my 10,000th case of soda still expecting a reaction, one that never comes.

My second book release?

I'm working on a book that'll look at my professional life in the workplace and as I went back to look at a chapter from my second book about my first SKUSA Supernats, I noticed that I didn't recognize the author from then. I've advanced as an author writing in the narrative form so this led me to wonder if a full release of that book would fit who I am now? With that said, I'm contemplating releasing the book, chapter at a time, on this blog. If you think this is a good idea, let me know in the comments or on my facebook page!

The Large Impact of a Small Pencil

 As I've said many times, I don't remember people in my memories. Because of this I need to remember people through other means and the #1 way I do that is through physical items. In 1993 my family moved from Indianapolis to Saint Louis. A lot of people were lost in my memories, but I had a couple pencils that I remembered them by. The pencils were from the school I went to and had the name on the side of the pencils. Through this item I still felt a connection with where I came from.

On my second day of school in this new place my classmates wanted to "test" me. I had been warned that this group always played some sort of small prank on a new kid, and I thought I was prepared, but nothing could have prepared me for what was to come.

For one reason or another I had to leave the room, and when I came back all my pens and pencils were gone. Normally I could have cared less as the best way to prank a prankster is to not give them the benefit or acknowledgement of the prank ever taking place. However, my pencils from what was still home to me were gone.

At that point in time, I was not diagnosed, and I probably couldn't have explained to anyone what was going on or why, but what everyone saw could only be classified under one word, "meltdown."

I became so frantic and irate that no one wanted to claim responsibility. I tore that classroom apart until I found my pencils which someone had placed under the teacher's podium. They say a person can't make a good second impression as everything is based of the first impression and this was true. From that point one I was a social outcast in my class because no one was able to understand why I reacted the way I did. I mean, what if my classmates had been able to understand that I didn't just "flip out" over an irrelevant pencil, but rather my means of remembering a place I no longer lived at as well as the friends that were there.

See, spectrum and not, we aren't that different. Everyone has those items that remind them of someone, someplace, sometime, but for me it can be a seemingly irrelevant item. Those items, whatever they may be, become highly valued and to simply lose an item, like the day I described in 5th grade, creates a sadness that can only be described by explaining it would be like someone deleting your memories. On that day I felt as if that had happened and that's why I had my seemingly overreaction.

As with most things like this it was a misunderstanding on many levels, and this states my purpose and passion. If there's just a little bit more of understanding in the world perhaps an incident like what I went through can be avoided, or at least better understood. I wasn't given a 2nd chance by my peers, but I'm okay with that now because it motivates me because it doesn't have to be that way. By you writing this today maybe I've come a little closer to creating a better understanding and for that I thank you.

The Words in Solitude

Writing is an odd thing. At times, the words can flow with the simple ease as one can turn a faucet on, and then other times, no matter the effort, there's simply nothing. When wanting to produce words, this can be extremely aggravating.

I recognized that the environment had to be perfect for me to write. Finding Kansas was written primarily between the hours of midnight and 5AM. During those hours I was alone with my thoughts, and it was as if the only two items in the universe were my brain and the computer. 

As the years progressed, and I started to blog, it became odd that my best material was written when I was traveling. I'm trying to deduce as to what causes this. I write better when alone and when on a plane I'm alone in a group, but it still works, and I'm not sure how although I do have my suspicions. 

When I began writing, I absolutely could not have someone read it as I was writing. Well, for that matter I couldn't even see a person because, with the I think therefore you should know concept, if I saw them, they knew what I was writing and all the thoughts that came along with it. So how does traveling with a group of strangers change things? I'd have to think that everyone else is registered as a single entity so there isn't that personable interaction such as exists with seeing a person I know. 

This is such an unfair thing to have; both for me and anyone else that's been around me when trying to write. I can remember the blogs I'd try to write while at USAC races and my hotel roommate would make a noise, or come back from dinner, and the ability to write was strongly hindered.

Maybe this will get better over time, and then again, perhaps, this is the key to writing things that go that extra bit that will make someone want to read and share. I'll be thinking about this over the next few weeks, and I hope to have some more insight on this because it has more to do than just writer's block. 

The Cause of Burnout

A follow up to Monday’s post in which I talked about autism burnout. First, I was exhausted when I wrote that and I don’t think I did all that good of a job explaining that the burnout is from autism which creates the burnout of external things. Secondly, and more importantly for today, one of the things that could’ve caused my mindset of that last week is that I was coming down with Covid. The exhaustion and extreme fatigue I experienced was obviously influenced by the start of that. With that said, I’m trying to take it easy today so I can get back healthy as soon as possible. 

Autism, Burnout, and Exhaustion

Last year, I wrote this post about autism and burnout. This past week, I have a newfound understanding of how pervasive and destructive burnout is, and it happens quicker than you think.

Burnout, when I think about it, is something that takes a long while to achieve. As a child, it was explained as a new hit song; sure, everyone at first loves it, but if gets overplayed and eventually people get tired of it and the next new song takes its place and the cycle repeats. I didn’t fully understand this because, when it comes to things I enjoy, they never do get old and I’ll play the same game or same song on repeat until those around me are on the brink of tears. 

So yes, I may not have understood the direct meaning of the way it was explained, I did learn that there are some things that are manageable at first, but as time goes on my ability to fend off doubt, anxiety, and the sensory bombardment of the world decreases. When I wrote the post from last year I was thinking of a long term event such as a school year (at least I think I was. I don’t read what I write so I may be remembering wrong). From this past week I now know that burnout can happen in an instant and I attributed it directly to exhaustion. 

Why burnout? Why can it come on suddenly? One thing that is difficult for me to grasp in any given moment is that yes, I am on the autism spectrum. Living in a “normal” world doesn’t often give time to stop, breathe, and assess that the reason why a place, activity, or task is difficult is because of the challenges that come with life on the autism spectrum. What this means is that there can be no “self-break” from the onslaught of a typical day.

Everyone, autism spectrum or not, may get snippy when they get tired. This is where understanding could be tricky for those not on the autism spectrum to understand, because they’ll say that it’s, “part of being human.” Yes, I understand this, but I must counter with the fact that those not on the autism spectrum cannot possibly imagine the strength it takes to forge onward each day. It’s impossible for me to describe how much mental strength it takes to fend off doubt, fend off the symphony of dissonance that is the daily barrage of sound, and to not become overwhelmed with every bit of random eye contact. 

The moment burnout creeps in, everything becomes even more difficult than it already was. Then, with each subsequent day that burnout mode is reached, it becomes easier and easier to traverse into that realm of languish and then there’s little respite from the crushing weight of the daunting, seemingly impossible tasks that come along with daily life. 

Looking back on my life, and the more traditional longer term events of life such as school, burnout was the antagonist of my story. My inability to cope through the exhaustion was far worse than any potential snide comment my classmates could ever give me. 

It’s a slippery slope, isn’t it? This burnout can hit in an instant and last much longer than the time that preceded it. Other’s understanding of this is difficult because I don’t believe it’s possible to understand something unless one truly experiences it, and the anxiety, and for myself, the overly sensitive senses, lends itself to something I feel is impossible for others to empathize with. 

I’m going to have to think of this more on how to combat this. As of now, I’ve got nothing, but I just identified this two days ago so the thoughts are new and fresh. In the least, I was able to put thought on screen and could relate to you the challenges of it. Hopefully soon I’ll have something, but for now I hope I got you to maybe be able to understand the challenges some of us may have living life on the autism spectrum. 

The season begins

The INDYCAR season is about to begin! Coverage begins today on Peacock, with the race on Sunday on NBC. I can’t believe I begin my fourth season this weekend.