Finding Kansas Revisited: Future

 Future

            I’ve written short blog posts longer than this chapter but provided in this short chapter is yet another example of the true struggle of what I was to deal with. I find it interesting that I used the word “predicting” even before I knew that those on the autism spectrum crave prediction.

            As with other chapters I don’t have too much to add to this. My thoughts haven’t changed and the fear of the future remains. Well, I will say that perhaps my struggle has gotten worse. Worse? How so? When I wrote this my future was rather bleak and I didn’t realize the possibilities of life nor the places and people that I would see. My fears back then of the future were fears that one would have in a very small world. My world is larger now and the variables of the future are greater. This isn’t a bad thing because without it I’d still be stuck in a tiny bubble, but it is something I do have to deal with. I’m not “cured” as some people may think. I still struggle with things and these things have grown as I have. It’s a challenge, but one I must face and one I must conquer.

 

Finding Kansas Revisited: Media and Firsts

 Media and “Firsts”

            This was almost a prophetic chapter, to be perfectly honest. I don’t know, though, if we are going the right way or the wrong way.

            This chapter deals with the fact that I believe that the interaction between various forms of media and those on the autism spectrum can be a hazardous situation, yet at the same time can be positive.

            When I wrote this Facebook was still years from going mainstream, and Minecraft had yet to unleashed on this world. When it comes to Minecraft I don’t know if there has been or will be anything as major as it in terms of generating interest. You should see it when I present at a school and mention Minecraft is the #1 Kansas those that I know are on the autism spectrum instantly light up. 

            Now, with the same thing I put forth in this chapter, is this a good or bad thing? I think there is no one answer and the statement of, “If you’ve met one person with autism you’ve only met one person with autism…” holds true here because for person it may be their social outlet and their way to build team skills. For another it may become a world that is so safe, so awesome, and so perfect that leaving it will be impossible.

            Another thing that is different is the way the news is delivered. My fear when I wrote this chapter was how a growing person would process their world around them when exposed to the media. In the media’s frenzy to be the first, or perhaps most shocking, the amount of gruesome violence has gone up by a margin I don’t even know how to measure. Is it real? Yes. Should it be shown? I don’t know, and that’s not for me to decide. What I do know is that witnessing things on the television when I was three, four, and five years of age troubled me for a long time. Maybe times are different, maybe people are stronger, and then again if exposed to so much violence one could be desensitized to it. Maybe yes, maybe no.

            This is topic where there is much debate, autism spectrum or not, and I’m not going to say one way or the other except the questions I put forth in this chapter. These questions and these thoughts are becoming more and more relevant each day as media becomes more and more accessible and seemingly intrusive. I go back to an example I use in my book about what life was like 100 years ago. There was no media and the only “firsts” and “musts” there were was survival; that was it, there was no status updates, no checking in, and gruesome crime scenes from around the world weren’t seen. Times change, and maybe people change, but for people on the autism spectrum is this a change for the better, or a change for the worse?

Finding Kansas revisited: hazards of firsts

 The Hazard of “Firsts”

            I froze while reading this chapter. I have no recollection at all of writing this, but it didn’t read like where I was in 2006 and much more read like something I’d write now. This was haunting because it’s clear that the groundwork is being laid for me to do more than write random essays to my dad. It’s strange, though, as my “cement theory” which I state in my presentation and will be in my 2^nd book was somewhat in this chapter but not fully realized.

            It’s weird to say I love a point I made, but seeing how it was almost ten years ago I think it’s right to say I agree with myself on the safety of sameness. The topics I wrote about as what could be a potential Kansas haven’t changed. I wrote this chapter in 2006 and a 1955 Chevy is still a 1955 Chevy and the 1911 baseball season is still the 1911 baseball season. Whatever our Kansas could be it’s often going to be heavy in facts because if we are talking about facts we are talking about something black or white and facts rarely change. 

            With each chapter it’s like I’m turning a corner coming closer to realizing there’s more to this than just my story and with this chapter I’m turning a corner coming closer at maximum velocity.

The Angst in the First Move

I've always used metaphors and analogies to describe what living with autism is like, and once again I rely on the game of chess to attempt to relate to you the struggles that are faced.

A couple weeks ago, a coworker of mine told me I could stop in and chat anytime I felt like it. My reaction was to freeze. I didn't know what to say, or how to react, because I was already fearing the opening moves because, for me, any opening move is experienced in the thickest fog possible. To describe this, let's start a game of chess.

This isn't a typical game of chess, however. This concept is socializing on the autism and as you can see, black's pieces are not viewable minus the king which, for this concept, imagine as the desired destination. The thing about this game is that all the pieces are still out there. The lay of the land is not able to be seen so, when a move is made in the dense fog, it is not known if a move is good, or not good. So, let's make our first move.

Opening moves are scary. Whether it is a common greeting, initial eye contact, or simply being in a position that requires an acknowledgement of my presence, it's downright terrifying! To illustrate this, the first move is made, and I still don't know the lay of the land. Was this good? Was it not? I'm unsure. The thing about this chess game is that, sometimes, I can see the pieces directly in line with mine.

As time has gone on, I've actually become more and more anxious about first moves and while it may look like I'm uncaring, aloof, or a bit standoffish, I can assure you that this is not the case. Inside my brain I'm trapped. I'd like to have the ability to say, "hello" or make eye contact, but I attempt to take the safe approach and avoid it all. "Don't look at them" is what my internal narrative says. "It's the safest way" is what my brain knows and trusts. What has led to this inability to make that first move? Let's take a look at what a social disaster would look like in terms of chess.

Socially, most of the time, I'm socially blind. Without being able to see the lay of the land, a common greeting to someone that is upset, focused, or already busy can get a snippy response. The signs were there, as in this chess example if you could see the pieces, but it was too late. The game was unwinnable as a brigade of queens were scattered on the social battlefield of life, but when one can't pick up on social cues, it's not known until it is too late.

For myself, the reaction to a snippy response creates hours' worth of processing. "What did I do wrong?" reverberates through my thoughts. It consumes me and I can't focus on anything but the proverbial chess board. Now, between these examples of attempting to avoid playing the game, and playing the game and getting hurt, what would you do?

I must remind you that, "if you've met one person with autism, you've only met one person with autism." How this concept applies to someone else may be identical, or nonexistent. If someone experiences something like I've described, it's hard to relate to you just how much bravery and strength it takes to go out into the world each and every day because, for myself, I know that by not making those first moves, I may seem uncaring or that I don't care about anyone. The alternative is just too difficult though. I'm frozen into this world of attempting not to make a move. I go through the day hoping to be the best chameleon and to blend in without being seen, or at least not being forced to make the first move.

I'm grateful I have this platform, and the self-awareness to know this about myself, and to be able to advocate for myself as the reasons as to why I am how I am. I wonder though, how many others have lost opportunities due to this same concept. I often fear that my image is one of self-importance in that I don't have time for anyone else. Without reading the opening paragraphs to this blog, one could come to that conclusion, but while we may look stoic and flat on the outside, our brains on the inside are fearful of the game of chess mired in the dense fog. The same way I'm socially blind and can't see the lay of the board, I'm sure those not on the spectrum will have the hardest of times understanding the strength it takes to power through, and to ignore the voice in our heads that tell us, "It's too difficult! Why try? Why leave the house?" I deeply respect other's abilities to make those first moves with fearlessness, and I hope someday that society as a whole can respect the hidden strength it takes to take on this hidden challenge, the likes of which most will never be able to understand. 

 

Revisited: Must

 Must…

            Where do I begin with this one? What I put forth in this chapter is, about word for word, the same as today. I haven’t talked about this chapter, and I don’t remember writing it, exactly, but I do remember the concepts I used in it.

            I take that back, I do remember writing it because I wrote it a week or so after claiming the #1 spot on Project Gotham Racing 3 and I was puzzled as to why I felt nothing. Truly, nothing. As I put forth in the book the amount of hours, hard work, and disappointment were staggeringly high but I achieved a goal that I put many, many hours in and in the end, when I was the best in the world, there was emptiness.

            To this day I still fight this. In the history of my blog I have several stories whether it is pinball world records, or my struggle to become #1 at Bejeweled Blitz, there is certainly a pattern here and the results are the same when I reach the pinnacle. There could be several reasons as to why I feel nothing, and I’ve thought about these in length. The first is maybe it isn’t the destination that excites me but the chase because it becomes a hyper-Kansas and everything else ceases to matter. As emotional as I got when there were set backs this paled in comparison to the struggles of real life and when I reached the top I was left with, “now what?”

            A second thing could be that being #1 is a solo experience and when reached there is no fanfare, no ending, no accolades outside of a screen that proclaims to the world who is the best. What does it mean to be the best, though? For those outside the top 10, or maybe 100, nobody cares. Maybe, for myself, this attempting to be the best in the world was trying to replace a void that was there from being isolated? Perhaps, but even in my previous relationship I would still have times where my mind was set on being a champion, set world records, or to be known as the best in the world.

            Further on in the chapter I talk impulsive buying and my mentality when it comes to purchasing is, “don’t thing about it, just do it.” Not the wisest of ways to shop, and the songs I mention in this chapter on Karaoke Revolution I, um, well, I bought them and NEVER used them once. I’ve tried to curb this and think, before buying, “Am I actually going to use…” whatever it is that I am purchasing. It’s difficult, however, because once something gets in my mind on needing, or “must having…” it doesn’t simply go away.

            With everything else I’ve written in all ties together. While all chapters are their own self-contained world they are all intertwined. Film Theory can stand on its own, but when one understands the Crippled in Addiction, and Must, it all becomes clearer.

Finding Kansas Revisited: crippled in addiction

 Crippled in Addiction

 

            In reading this chapter I thought, “Gosh! I sound like a jerk!” Then I got to the part where I mention this. It was difficult for me to know that something shouldn’t make me mad and yet be powerless to do something about it. And herein lies the problem; I know what the problem is and yet it continues on.

            I use a new term now instead of the title of this chapter and I say now, “Whatever is now is the only thing that matters.” Another phrase I’ll use is “hyper-Kansas” when something gets to that level.

            I’d like to take a shot to rewrite this chapter and yet at the same time my words in this are so honest and pure. My struggle is obvious in this chapter, and this struggle continues. I find it so odd that I dreamt of a life of going from place to place like that I mentioned a race car driver would have and yet I’ve got that at times and I was right! I was right in that with a constant change of scenery there isn’t the ability for things to get to a routine basis. Sure, I have my favorite places to eat across the state of Missouri, but here’s the thing; from traveling so much my routine at home isn’t as rigid as it used to be. I’m not sure if this just happened by coincidence, or if I really knew that this would happen, but whatever the case I’m glad it did and while I still like my routines, the addiction I word in this chapter isn’t as over encompassing as it used to be.

Finding Kansas Revisited: Fear Vs. Fear and Sentence

Fear Versus Fear

            Again, this chapter is so right, so precise, and filled with so much of the emotions that are hidden well below the surface. Early in this chapter I talk about money and the amount I was talking about in this chapter was having $1,000 in the bank. That was it. I had been flirting with being at $0 so often that my mind would always, ALWAYS, be worried about the next credit card payment.

            When I wrote this I never could’ve imagined being able to make a car payment, or a house payment. While I am at this point now the fear vs. fear concept is still there. The stressors may have changed, somewhat, but fighting fears of daily life remain. How long will I have a job? Will I ever be in another relationship? Can things truly be better? These questions go on, and on, and on. They repeat and then repeat the repeat. As with the other chapters recently this is another one that I can’t add too much on because I still consider them right and there’s nothing more to add except that the game I quoted at the start is now tied for amount of innings played, but a game between the Giants and Nationals in last year’s NLDS in the sport of baseball had a longer amount of time played.

 

Sentence

            You want a short chapter that summarizes where I was? The chapter “Sentence” is it. I still couldn’t tell the story of the first website I found, which said there was no hope, but the firsts that came from my first few weeks of knowing were awful.

            This is where I hope there is true change in this world. The battle I’m fighting is in essence born from the way I felt and the way I described my life in this chapter. When I wrote this I felt as if my life had already been lived and that there was no possibility of anything ever becoming better. It’s still a battle I face, myself, and I have to constantly remind myself that these thoughts are wrong. It’s difficult, I can’t lie, but deep down I know these words are wrong.

            One of the battles here is the media. The media can very easily create one of these sentences that I refer to. Before I get to that, I’ll explain I feared that my diagnosis was a life sentence of solitary confinement and there would be no changing that regardless of how hard I tried. Now enter the media; when a news story happens and all people on the autism spectrum are lumped together and generalizations are made and there are no mentions that, “if you’ve met one person with autism you’ve only met one person with autism” it is very easy to create a sentence in one person’s brain.

            Awareness and understanding are the way to combat this and one of the many different reasons I do what I do is because of this chapter. This may read as one of my most depressing chapters, and it very well may be, but it’s still there because I’m here now. When I wrote this hope wasn’t in my dictionary, vocabulary, nor would it be something I’d ever imagine and yet, here I am. That’s where the hope lies. We are all going to take different paths, and no two people are going to have the same story, but even though things may seem and appear hopeless things can change. What I saw as a sentence that all but guaranteed that my life would never amount to anything was actually a calling, not a sentence, and now I wouldn’t trade what I have for anything in the world.

Finding Kansas revisited: what has become

 What Has Become…?

            This chapter is beautifully tragic. On one hand I talk about being cold, but on the other there is this deep desire to be a part of the world and to know what has happened to those around me. 

            The world is a much different place than when I wrote this thanks to social media. The originating inspiration to this was wondering what had become of Linda. With the ability to find anyone with a Facebook account it is possible to find out what has become of people. In 2008 I tried messaging her, but she never responded. I expected as much.

            To show I’m not the only one on this I had a fellow classmate from 3^rd grade recently track me down to wish me a happy birthday. This elated me as I did go to his sleep over birthday party, but I didn’t last the night due to the stress of it all, but it was a major thing to know that other people too has this.

            As with so much that I’ve written there’s so much that I have built upon from this chapter and the issues with memories really shines through in this chapter. I’ve used the example of driving down the road and having things follow many times in presentations.

            Again, as with the previous chapter, there isn’t too much more to say because it’s such a precise and perfect chapter. One thing to note is that it’s at this point in my book my chapters really start shortening up. I started feeling more confidence and I could say exactly what I wanted to say in fewer words. It made for completing a book more difficult, but filler became something that I just couldn’t do anymore and to this day being long-winded is something that I just can’t do.

FKR: Music

            My first reaction to this chapter was that I’m 99% sure I’ll offend any music teacher out there when I say that my music theory isn’t as boring as talking about half-notes and treble clefs.  So to all you music teachers out there, I’m sorry.

            Anyway, apologies aside, I was certainly onto something on this chapter, but compared to what I know now about this subject it is much deeper than when I first wrote this. This could be because music is easier to have now. When I wrote this chapter YouTube was something that wasn’t widely known, and I never had any device capable of playing music outside of a portable CD player in my car. It wasn’t until 2011 that I got an iPhone that could actually play music and since music has taken on a larger role in my life.

            I’m still protective of my music choices because I was right in this chapter that music is a pathway to the associative memory system. If I admit that I like a song it’s like letting you in on all the memories associated with that song so for instance if I said I like song X then you’ll know song X equals airport Y when I was going to race Z and then you’ll know every thought, word, and action from that trip and it’s not like anything odd, weird, or wacky happened on that trip, but in my mind, being all or nothing, there’s no end to the amount of knowledge you’ll have about me.

            With the advent of the 256GB phone I now have 3,000+ songs on my phone and many of them are, well, to take a phrase from the previous paragraph, “odd, weird, and wacky.” The oddest selection I have on my phone is a 10 minute remix of the McDonald’s Filet-O-Fish ad. You know the one, the fish is on the wall singing, “give me back that Filet-O-Fish, give me that fish…” To anyone that has heard it you’ll know 10 seconds is too much, but try 10 minutes! FUN! Anyway, funny story about that song, just over a year ago I was in southwest Missouri many years ago with a coworker, and I was riding with her to a presentation and this coworker loved giving me a hard time. It’s all in good fun so I thought I’d return the favor by slyly starting that song on my phone without warning. I did so and she was unfazed by it. She simply gave a half smile and said, “Aaron, if that song isn’t silenced within a few seconds I’m dropping you off on highway 60 right here and you can find your own way to your presentation. If you don’t make it I’ve seen your presentation enough that I can do it. Got it?” I did, and I believed her! Then she asked me, because she knows about this associative memory system, “Aaron, what on earth does that song represent and right there the defenses went up and I uttered a half-believable, “I don’t know” because again, if I give just one percent of the story she’s going to know the whole story and then some.

            This chapter may seem small, or almost irrelevant, but what it represents is much larger than music itself and maybe someday I’ll give a full rewrite to this chapter to give it the impact it deserves.