Life on the Other Side of the Wall

Champion: 1 Year Later

2013-06-19T04:00:00.000-05:00

I can't believe it's been a year. It's been a year since I was awarded a Champion of Mental Health honor from the Missouri Department of Mental Health Foundation.

The whole banquet seems like yesterday; the nerves, the food, the pizza afterwards, and of course the video about me and the speech I gave,

To this day I still have trouble understanding how and why I got this honor. Perhaps it's just because I feel a bit down right now, but as for what I do, well, I do it because it has to be done. I don't remember what I said in my speech, and I'm not going to watch it, but I think I said I never started out doing this for any sort of accolades. This holds true to today; I just want to reach as many people as possible because I want to live in a world of understanding and I used to live in a world that didn't understand me and I didn't understand it.

Perhaps all this is why I was honored last year. I mentioned I have felt down, and there's several reasons for that, but a thought keeps creeping into my mind, "What if?" Yes, what if I didn't have Asperger's? Who would I be? Where would I be? Would I have made in racing? Oh, I could play the what if game for hours, but then at the end of those hours I always come to the conclusion that if I weren't on the autism spectrum all that I am would not be. I think that is a profound statement as I simply would not be me. All would be different. Some better, I'm sure, but some worse as well. I wouldn't be me and if I weren't me would I be speaking? Would I be an author? Would I be making an impact?

Yet one thing that is difficult for me is this knowing I have an impact yet feeling nothing about it. Okay, maybe I feel a small sense of pride during a presentation, but afterwards it is hard for me to fathom the fact that I was able to present in the first place and that I had any impact at all. Again, perhaps it is this which is why I was honored.

I'm sure next year, on this day, I will be just as confused as I was this year and last as to how and why I received such a prestigious honor, but nonetheless I'm going to just keep plugging away at doing whatever I can to help bring a much needed level of understanding, and an inside look, of Asperger's Syndrome.

The CC of Fear

2013-06-17T11:51:00.003-05:00

It's obvious sentence time; communication can be hard for those on the autism spectrum. Okay, now that is out of the way let me expand on one of the reasons why this is.

I've also been hearing this a lot from parents and that is that one-on-one conversations can work great but if one extra person joins the conversation the whole are of conversing breaks down. Why is this? In my book Finding Kansas I believe I explained it by having the reader visualize a chess board. This is how I see a conversation; one person moves and the next person reacts. Now let's say a third player joins the game and the chess board becomes a triangular board but all the same rules applies. While that may sound cool think of all the possible moves for each other player in regards to your own.

In a conversation my brain is working like an overclocked computer trying to analyze everything; to put simply I'm thinking, "if I say A they'll say B and if they say B I'll say C unless they say D then I'll have to say E..." There is no off switch to this line of thought but there is one thing that will derail my confidence in anything I say and that is the CC.

For those that know e-mail the CC, or carbon copy, is how you can send an e-mail to a whole list of people and to me, this is the scariest of scariest things, especially in a conversation. The way my brain works, if I tell a person something I can't calculate the fact that they might go tell someone else. If I do think that then I'm having to play phantom chess, the board grows from two, to three, to maybe even more players but I can't see there moves right away. Also, in a future conversation, should the other person bring up what I said to the first person I will be caught off guard and then I will try and figure out what else they know and since there is no way to actually know my brain will be endlessly spinning and working trying to figure out the impossible.

This is one thing you have to watch out for as if too many instances of the "conversation circle" as I call it (circle because something said comes full circle and returns to the beginning) and I will hesitate and speaking. Now here's another important thing; you might have come to the conclusion that the stuff talked about within this blog post, as in something I say, might be something derogatory towards a person. This isn't the case; this full circle aggravation is done with anything. If I told person A that I went to a gas station and the pump acted funny and then that person told person B who then asked me about that incident that would be just as bad as anything.

What this all comes down to is processing. If I know what I've said in the order I've said it I can predict in my mind what is and is not known. If everything that is said is repeated to everyone else then I can't predict what may or may not be said. Perhaps this simply may look like a control issue, but it's more than that as my brain has to play the processing game of, "statement A=B unless C=D..." and if words are endlessly repeated then the mathematical possibilities are infinite and for a brain that has to be able to calculate the finite the infinite shuts the whole system down.

Beware Transitions

2013-06-14T12:16:00.000-05:00

Okay, so I'm writing about something super obvious today and that is that transitions are difficult for those on the autism spectrum. However, there is something more to this than is normally spoken of and that is what I'm going to talk about today.

What do I call a transition? The way I'm using it today is going from one task to another. A task though, for me, could be a multi-hour or multi-day thing. When I am in the midst of something that I am full enjoying I may become oblivious to how I feel. This often happens at the race track when I am flagging as I won't realize I'm drinking enough water on a hot day because I am so focused on the task at hand, and enjoying it, that I don't realize just how bad my body is feeling.

This lack of feeling is common for myself when I am engulfed within one of my Kansas'. I look at this week as this has been the first light week I've had in a long time and I have felt absolutely flattened. Granted, I think most people that have had my schedule (80 days on the road so far this year) would be tired but for me it doesn't hit until there is a transition and when it hits it hits big.

I think back to the school years. I didn't get along with school all that well but every year come May or June when school was over I would become sad it was over and then as I transitioned into the new routine I would become extremely exhausted. Again, so long as whatever is going on continues I often won't realize just how tired I am. Usually though, unlike this, the task or activity will have to be liked to become oblivious as to how I feel.

One of the ways autism and special interests are explained (I call this Kansas) is that, "those on the autism spectrum will have an area of interest or knowledge that they will do to the exclusion of other things." This exclusion may also include physical and mental balance. It's not that I don't care about my body at the race track but rather I am so focused on the laps, the classes, the safety, and making sure my technique of flagging is perfect that I don't realize I'm dehydrated. I don't realize that I'm a little sore, or a little tired. If you'd like to see the definition of metal and physical fatigue all you'd have to do is look at my face about five minutes after the final race of a race day I work. "Are you okay?" is something I hear a dozen times but while I'm armed with my flags I feel nothing; it's once it's over that I begin to feel.

The concept holds true with traveling and presenting. Two days ago I gave a presentation on a day that I barely had enough energy to stand up, but once the presentation began I lost the feeling of being tired. Five minutes after the presentation I felt about as junky as possible.

So I just wanted to share this today in case you know a person on the spectrum that is, while in activity, full of energy and spunk but as soon as there is a transisition there is a major change. I feel this is important because this loss of energy and feeling of ill is sudden and without choice because we, ourselves, don't even know how tired or bad we felt while doing whatever it was we enjoyed doing.

My Most Memorable Race

2013-06-12T12:09:00.001-05:00

In my book Finding Kansas there is a chapter about my first race. While that race was certainly memorable it is nothing compared to the race that is the most.

It was 1997 and I was in my third season of racing karts. This was a rebound season for me as I had a crash at the start of the 96 season and had spent the rest of the year timid behind the wheel which led to getting involved in crash after crash.

While the series was the Saint Louis Karting Association we were actually in West Quincy, Missouri due to the fact that our track, which I blogged about in 2011, was under water. This was fine by me as the TNT Kartway was a blast to drive with a banked final corner leading onto a nice straight.

This story picks up right before the main race. I was 14 years old at the time and also flagging all the classes I didn't race in. As the races before mine were ran I was getting nervous as I thought I had a legitimate chance at the race win, but my starting position didn't show it. In the first heat race I won, which was my first heat race win, but the 2nd heat race saw me getting taken out so I would be starting 7th of about 15.

It was time. I zipped up my racing suit, crossed the track, and got into my kart and waited. This is one thing I don't miss about racing; this time before a race when one has to try and tune everything out. The world around is moving, there's smell of cooking food in the air, but inside the helmet there's a world of complete isolation. As my dad started the engine he gave me his customary, "use your head" gesture.

We rolled out of the grid and onto the track in anticipation of 15 laps of racing. As I said, I loved this track but going from 7th to the front was going to be difficult but at least I would be starting on the inside.

The field came off of the final corner (it's the one in the bottom right of the photo and we ran counter clockwise) and a slow pace waiting... waiting... waiting... then there it was, GREEN! and we were racing into turn one.

Starts had intimidated me as it was on the first lap of a race the previous year I had my crash at the old Gateway race track, but I had to put that aside as I knew I could get to the front. 15 laps may sound like a lot, but it isn't when lap times are around 30 seconds. With that so I had to move up quickly to not allow the leaders to pull away.

I didn't get the start I wanted as the outside line got the jump. I wanted to blame the flagman, but it was a substitute so I couldn't be all that upset. Besides, driving angry is a one way ticket to a bad race.

At the end of lap one I was in 8th with 7th right in front of me. You wouldn't think it, but there's drafting in karting, and a lot of it! Headed into turn one I had an unexpected run and as he turned into the corner I aimed out and held my breath as I was attempting an outside pass on a flat out corner. "Aaron, what are you doing?" I thought to myself. What the picture of the track doesn't show is the knee-high curb (okay, it isn't that high) that is in the kink that is turn two. That meant if I didn't complete this pass the driver in front of me wouldn't know I was there and I'd run out of room and I'd probably get launched over that curb. That didn't happen though as I stayed on the gas and somehow pulled off the impossible and was now in 7th with 14 to go.

6th place was right in front of me as we headed into the final corner and once again I got a run down the straight and once again I went to the outside in turn one and once again I pulled off what I thought to be impossible. As fun as those passes were they were certainly scary moments, but I was on a mission and running the best race I had ever ran and it was only two of fifteen laps in.

My passes on 5th, and 4th were more conventional as I passed on the inside in braking zones and now I set my eyes on third as the race was now half over. I was losing heart, though, as first and second were long gone as it took me several laps to get around 5th and 4th.

With five to go I went for my move in turn one once again, on the outside, and made it work, but I had settled down and relegated myself to knowing that making up about five seconds in five laps was impossible. I may have been the fastest kart on track, but in the sport of karting a tenth of a second can be an eternity so five seconds was a margin that could not be overcome.

Of course, in the sport of racing anything can happen and it usually does. The leader and second place had been swapping the lead and in the north turn they made contact and both drivers spun way off the track. I saw the dust as I came out of turn one and as I got to turn three I counted two karts. It may have been by default, but now I was the race leader with less than five laps to go. Coming off the final corner on the same lap I glanced behind me and I had about a half second lead; all I had to do was to hit my marks, not push it, and I was on my way to my first win.

Across the line there were four laps to go, then three, then two and each lap passed as if a decade had passed. Time was crawling and I started hearing every bump, rattle, and I was sure something was going to go wrong. "Just keep it going, no mistakes!" I yelled as I headed to the final corner. The two karts which had been leading were back in the race but they were a good five seconds behind and I now had about a full second lead over second place.

Around the final corner and I could see the white flag in the air. This was it, the final lap; I was just 30 seconds from achieving a dream I had had since I was three and that was winning a race. I wasn't breathing as I went into turn one and my entire body was tense, but I hit my marks and I headed to turn two then the tricky turn three.

Headed into turn three I lifted off the gas in the same spot I had done but then a flash of something caught my eye flying over my head. I didn't know what it was and I tapped the brakes and turned into the corner. There was something odd though; silence. I stepped back on the gas but there was nothing and I was slowing down. "No! No! No!" I yelled. To my left flashed the second place kart whom I sure could not believe what fate had given him and at the same time I couldn't believe what cruel blow fate had dealt me.

I pulled off the track and I just sat there. I was just 20 seconds away from a win, and now I was seated in my kart, in the weeds. I would get up out of the kart just as the race winner went passed me with his one of his arms raised in celebration as this was his first win in what should have been my first win. About a minute later the retrieval vehicle came and the kart was loaded up and I then saw a huge hole in the engine which was the demise of my race.

Instead of riding back with the kart I walked towards the finish line as I still had to flag the remaining races. I took my time walking back as I wanted my eyes to dry first and I had to have composure to be able to do my job rightly.

When I got to the finish line I took the headset from the sub and stood in a very dejected manner. The track owner, who was also announcing on this day, came on the radio and said, "Aaron, I know you are probably dejected beyond belief right now. But look at it like this; anyone can win, but it isn't how you win that matters but rather it's how you take defeat. Especially defeat when so close to victory so keep your head high and move on."

What made this the most memorable race? The final race of the next season I would pick up a race win in a race that saw even more daring passing on my part so why isn't my first win the most memorable? It was the track owner's talk over the radio as I just had experienced the most ultimate gut punch fate could deal me in that race. It wasn't so much going out while leading at lap four, this was going out when I was so close that it was all but a guarantee. However in racing, and life, there are no guarantees and I think back often to that race as I recall the moves on the outside, the liberating feeling of being the first to see the white flag, and that big shiny piece of metal which was my engine blowing up. Yes, I think back to this often as anyone can win, but it's how one deals with adversity and challenges that shows a persons strength. A few minutes after his pep talk I was starting the next race with the same passion as I had on all the races prior and yeah, I truly wished I would have won, but isn't this what shapes who we are? And wow! that day certainly was a precursor to the events that follow in my life.

What if...

2013-06-11T10:08:00.002-05:00

What if we lived in a world where there was full autism awareness and understanding? How much fuller would lives on and off the autism spectrum be?

What if we lived in a world where the autism spectrum is misunderstood and feared? How many challenges would be faced by those on and off the spectrum that wouldn't have to be?

What if we lived in a world where everyone on the autism spectrum got the services they needed? How many more people would be able to be just a little bit more self-sufficient and have more confidence?

What if we lived in a world where everyone on the autism spectrum fell through the cracks? How many more people would be unable to be self-sufficient and will eternally be dependant on everyone else?

What if we lived in a world where the words autism and Asperger's doesn't have a stigma associated with it? Would this better the awareness and understanding?

What if we lived in a world where the words autism and Asperger's will forever be stigmatized? Would this lead to more and more prejudice of the autism spectrum?

What if we lived in a world where teachers are made fully aware of Asperger's and are better equipped to give those students the education they need? How much easier would the education system be for students and teachers? What future revolutionary thinkers would make it out of the school system equipped for the world and life ahead full of hope?

What if we lived in a world where teachers were not given the resources they need to understand Asperger's? How much harder would it be for students and teachers? How much potential would be lost as those on the autism spectrum fall into the fail set and give up and lose hope?

What if we lived in a world that understood that, "If you've met one person with autism you've only met one person with autism"? Would this help all the points made above? Would this decrease the stigma and misunderstandings? Would this make the media give a better portrayal of autism than using the phrase, "all people with autism..."?

What if we lived in a world that had no understanding of, "If you've met one person with autism you've only met one person with autism? Would this help all the points above? Would this increase the stigma and misunderstandings? Would this give the media more power to state confidently that, "All people with autism..."?

What if you could make a difference?
What if you couldn't make a difference?

(Writer's note: The worlds above are starkly different but by just using slight changes of words. One little change of one word created a completely different world. Look at the last two sentences, just one change of word changes the world from hopeful to hopeless, but that's how I see awareness. Each single person we reach can, for them, be the difference between one of the paragraphs and the opposite and that difference, well, I think you know how big of a difference that would be.)

In the Right Light

2013-06-07T06:14:00.000-05:00

A comment on yesterday's blog brought up a great point. In yesterday's blog I mentioned that I do everything I can do blend in and not really be noticed. The comment, however, mentioned the fact that most things in my life have me out there in the spotlight so what gives.

This is one of the paradoxes of Asperger's Syndrome in the way it plays out for me and also this is one of the trickiest things to understand. I explain this in my book using the chapter of "Alias" to explain it.

I used to talk about Alias a lot more on my blog so it's been a while so here's a refresher; I love rules, and with certain things I do there are very defined rules. Within these rules comes knowledge of what is expected of me and what could happen. Over time a role begins to develop and I call this Alias. At presentations I'm not really Aaron Likens, but rather I'm simply the Autism Ambassador for TouchPoint Autism Services. At race tracks I am the most visible official displaying the flags that keep order to the race. There isn't a brighter spotlight than that, but once again this is Alias in effect.

Now outside a presentation or a race track I don't have an Alias established. The rules, for me, are often unknown and the better I am at blending in, or being invisible, the safer I feel. Now, can you see why this can be confusing? The fact that I can speak to a thousand people at once without fear and yet walking into a store creates an anxiety to the core on whether or not a staff person is going to say, "Can I help you?"

It can be frustrating living this duality. On one hand certain things, like working at a hectic race track and having the gift of public speaking is easy, but other things like small talk and simple conversation can be a challenge. That being so, would I trade this to be normal? My answer is a firm "Most certainly not!" This won't be the answer each person with Asperger's would give, but I understand my gifts and I understand my challenges. My challenges have shaped me and have allowed me to become the person I am today. If you would have told me eight years ago that I would proclaim this I would have just shaken my head and told you "you just don't understand" but now I know it's the truth.

Explaining Discomfort

2013-06-06T05:00:00.000-05:00

There's a fear I have and it is fought each and every day. My goal in life is to fit in, be normal (whatever that means) and to just be. Having Asperger's, however, can sometimes create complications and while the complications are often the major story there is another story in play beneath the surface.

So often I talk about the complication itself but what I leave out is what happens the rest of the time. What does this mean? I've talked a lot about anxiety recently but there is another aspect I have omitted. It's also been a while since I stated this, but I am hyper-vigilant to my surroundings. This vigilance is always on and I am on constant alert for what could create an issue be it loud noises or random social encounters but this vigilance has more than one layer.

I'm now in Syracuse, New York and last night Kyle, the USAC interns, and myself went to this rather busy BBQ place. This alone worried me and yesterday when Kyle said that we were going to eat there my response was, "Is it loud?" Now what type of question is that? If someone is talking about a place to eat isn't the normal question, "is it good?" For a person on the autism spectrum my question wasn't that far out of the ordinary and here is why. I said my vigilance has two layers and one is protecting myself from highly uncomfortable situations but secondly it's to attempt avoiding situations where I might have to explain why I am uncomfortable.

Look, for those that don't have it, and don't have family that are on the autism spectrum, it's a tough thing to explain. Imagine this; let's say you have a horrible fear of going to the dentist and while you're on the chair with all the sounds of the drills and bright lights someone simply asks, "hey, what's wrong?" At that point in time are you going to be able to put into words that could be understood by the person who is asking that question?

So last night, at this BBQ place, we were seated outside because it was a perfect night and to my right was a row of motorcycles. Because of this I couldn't really enjoy the place, the atmosphere, or the conversation. This within itself is somewhat of a crime as I love being in new places because one never knows when they will ever be back in a certain place, but instead of enjoying this my eyes were glued to those walking on the sidewalk as I worried, no, obsessed with a fear to my soul that a person would step up and sit on one of these bikes. Why? There were about a dozen bikes and the furthest one away was at most 15 yards away and I hate loud noises.

As time progressed my fear grew and grew and it had two dimensions. One, obviously, was the discomfort of a starting motorcycle engine. I can remember when I was about six and my friend's dad started a motorcycle engine and I screamed for at least ten minutes. Back then no one knew why, but now I know and I was worried that, if a person started a bike engine, there would be some sort of reaction on my part. And if I had discomfort what would those seated with me say?

The last thing I want is to be noticed. When someone notices I'm having an issue of some sort two things normally happen. The first is "what's wrong?" which is very much like the situation I explained about the dentist and then the second part, if I explain at all, is "oh it isn't that bad." Perhaps saying this is an attempt to make me feel better somehow but it has the opposite effect. I do know, for you (or rather most people) that whatever is creating an issue for me is a non-issue for others but the fact of the matter is that it is an issue for me. Minimizing it doesn't help me. Saying it isn't that bad is, in a way, stating that I am weak. I understand that if I were normal (whatever that is) this noise, light, or whatever would be just another passing moment in life, but that's not the case for me.

Right before the food came out a person sat on a bike and I prepared, and there it was. I know I work at a race track but here's the thing; at a racetrack I have ear protection which truly minimizes the noise. I can tolerate it. Also, the sounds are constant. The issues with random motorcycles are that they are, well, loud but there is no predicting when or when not a rider is going to rev the engine to a fever pitch.

The noise was loud and I grimaced. At this point in time I want to be invisible. I don't want to be noticed, I don't want to be a burden; I just want to ride out this storm. Don't tell me that it isn't that loud because for you it isn't, but for me it is.

This is the reason anxiety can run deeper than what one might think. The episode itself is bad enough but also the fear of how those around me will react. Will they think less of me? Will they think I'm odd and if so, will they say it aloud? I had a purpose when I started this post by proclaiming that I just want to fit in and when something happens, say, a bunch of motorcycles firing up I am going to have an issue with it. All I did was grimaced and try to disconnect myself from the noise, but I did have a look of discomfort. Thankfully no one pointed this out or critiqued the situation and that was great. The last thing I wanted to do was to explain the situation as it was unfolding. Anxiety is bad enough without the fear of social ridicule.

The Road Ahead

2013-06-05T05:54:00.000-05:00

Is it possible to feel so my passion towards something it creates sadness? That's sort of how I feel right now and I don't know why. It all started as I spent a 2nd day in Manhattan yesterday and every time I've been there I get inspired and once again it happened.

The feeling of being inspired though has no defined aim. I feel as if everything I've done is irrelevant and that I have to push myself harder to do more, become more, and reach more. I don't know what the root of this is but it's a feeling of complete restlessness.

This feeling grew and grew yesterday and as I walked the streets of Manhattan and strolled into Times Square it reached a sensation of maximum velocity. I remembered all the other times I made this journey going all the way back to 2006. I thought of how much I've changed and grown but at the same time I thought to the future.

Anytime I think of the future it is as if my brain scatters into a billion fragments as I try and piece out every possibility. With each of these thoughts the end was the same; where am I going?

I yearn for the answer as to where am I going. However, I don't think anyone can really know for sure where one's road in life will take them. I yearn for this, though, as I wonder if what I'm doing is enough. I don't know if I could do more, but if I could what would it be? I've been able to write decent blogs, finally, after a month or so of truly struggling. Does this mean I was pushing myself too hard?

All these thoughts flooded my head and I was just another person in New York lost within the business of their affairs. This is what I love about Manhattan; yeah, the excessive amount of honking by cabs is a bit much for me, but when it comes to the social aspect everyone really is on a deserted island in the midst of a crowded city. Except for people trying to get you on a tour bus, or trying to fill seats for a televised comedy show, the 4th wall is never broken. It's a beautifully orchestrated, chaotic system and I love it.

As much as I love the city itself I was not loving the tempest raging within me. I felt pride in what I've done but guilt in what I haven't done. But the question I kept asking was, "what more can I do?" Asking yourself that when there is no answer but having to have an answer leads in circular thought that can not end. That's where I was and that's where I am now as I write this.

Yesterday I wrote about what happened in New York four years ago and again, this time, my trip to New York has proved to be inspirational. This time though I'm not redefining myself but rather I need to figure out if what I'm doing is enough, or if I need to do more of it. Or, is this the trap that often plagues me in that I never take pride in what is, but rather I see what isn't?

From this blog I hope you can tell I'm somewhat confused. All I know is this; I want to keep doing what I'm doing. I think I need to be better at finding balance and maybe I do have it with this racing swing I'm on right now my writing has returned. My racing schedule this summer is rather intense, and I feel bad about the time I'm away, but at the same time this is what refuels me. This is what, perhaps, gives me the balance my body needs. I was wearing down, but now my strength is in the process of renewing. Instead of focusing on the next few days my mind now is trying to create some major and exciting prospects. So yes, while my trip to New York didn't redefine me this time I feel as if it added some confusing clarity.

New York: 4 Years Later

2013-06-04T07:41:00.000-05:00

After events outside of my control I'm now in the New York City area and the timing couldn't have been better. My story of who I am began here just four years ago. I must say that the timing couldn't have been better because the past two weeks I've doubted my strengths, skills, and impacts but it was here, in New York, that I found my voice.

Four years ago I had a singular aim but was otherwise aimless. As my story goes, I wanted to be a race car driver and so many times I nearly reached that goal. Sure, I had written a book but it was self-published and had a very limited impact. This was frustrating and nonetheless I still had dreams of making big in racing.

On May 31st, 2009 my aunt and I attended the Autism Speaks 400 (that link goes to my aunt's blog about the race. She didn't have the best of times and has a humorous look at NASCAR, Delaware, and the day in general) and I thought during the entire race that I should have been out there on that race track. Why was I in the stands? Why wasn't I living my dream? Why was everything I wanted out of reach?

A couple days later I headed up here to New York City to meet a very influential person. If you've followed my blog a long time you might remember this video blog from last year that I did with her to thank her. What made her so influential was this; back when I first started putting my thoughts and feelings on paper my dad sent her my works and she said that it had merit. My dad informed me of this and every time I felt overwhelmed and wanted to give up I fought the urge and took my angst to my computer and let me emotions flow in the form of words and metaphors. Well, a few days after the race I did indeed meet her at Autism Speaks and the simple fact that I had a meeting in New York City gave me a feeling of something along the lines that maybe all this work I did to write was worth something.

Leading up to this meeting I had had several book signings and I heard the same story over and over. Parent after parent told me stories of doctors saying, "don't worry, you're child will outgrow it" and schools saying, "oh yeah, it's just a delay, and even if it is Asperger's, which it isn't, every child outgrows it by the age of 16." Did those stories mean anything when I first heard them? Nope, not at all. I was just impressed that someone might just buy my book. However, during my meeting, I was asked an amazing question. And what makes it so amazing was that I didn't take it literally. This doctor at Autism Speaks asked me, "Aaron, now that you have a book out do you still want to race?"

Did I still want to race? You bet I did! I was just a few days removed from the NASCAR race in Dover and just over a week removed from the Indy 500. My dream from the age of three was to race in either of those series. It was all that mattered in my life. However, when asked that question four years ago, I gave the most passionate answer I have ever stated up to that point in my life as I proclaimed that, "yes, I still want to race, but it's a new race now. The race is spread as much awareness and understanding as possible because there is so much hope out there only if the world understands us."

That was then and while in a way that seems like a lifetime ago I still remember the whole experience as if it happened two minutes ago. What started on that day was something I could never have imagined. Sure, I proclaimed my new race but I had no idea about how to do anything about it. I was one of the shyest, quietest, most reserved individual in the world and had no public speaking experience. None! slowly things developed and TouchPoint Autism Services offered me a job as a "Community Education Specialist." I don't think they, or I knew what this meant, exactly, but I honed my skills presenting to police officers and parents and since that day back four years ago I have given 390 presentations to 24,642 people.

I don't think anyone could have imagined the events of the past four years happening. I don't believe it myself. I still don't understand what I do or how I do it and unless I am in the midst of presenting I can't imagine myself being able to do it. Yet somehow this shy, meek, and overly humble person who was unable to give any sort of presentation while in school can now win over student bodies, doctors, and police officers with an ease that shouldn't be possible.

I began this post by saying the timing couldn't have been better as I was starting to doubt what I was doing. Then, as I blogged last week, I read a profound review of my book. That was vital because at last week's Indy 500 I, for the first time in a long time, yearned for that career of a race car driver. I feel bad, but I had the thought of, "what am I accomplishing?" I don't know what created this, whether it was exhaustion, or the fact that it was the most amazing race I've ever witnessed it, but whatever the case was I thought it. But now, I'm back to where my current life began. Between the multiple profound reviews that popped up on Amazon this past week, and returning to the genesis of my life as a speaker, I feel my passion returning with an untamed vigor. Instead of wondering "What am I accomplishing" I am now thinking, "How can I accomplish more? How can I reach more people? How can I help the world understand us more? How can I help those who need understanding the most?"

It's a wonderful feeling! The simple fact of being back here in New York City has rekindled that passion I first experienced four years ago. I don't know where I'll be in another four years, but if it's a repeat of the past four years I think I can honestly say that it truly is unimaginable.

Strength

2013-06-03T05:00:00.000-05:00

I think Friday’s blog from last week was one of my finer posts. That’s odd as just a week ago I was contemplating whether or not I still had the ability to produce anything worthwhile. However, from the reviews I received on Amazon last week it fueled a writing explosion and I feel I’m back.

Anyway, I talked about anxiety on Friday and that is an often talked about topic as it can severely effect a good percentage of us on the autism spectrum. Today I want to talk about something that ties into anxiety but isn’t exactly. No, what I want to talk about today is strength.

Strength is not a word I use very much, but I want you to put yourself in the shoes of a person with Asperger’s. This can be hard, as I must use the line of, “If you’ve met one person with autism you’ve only met one person with autism.” What that means is each person is going to have his or her own challenges so there is no way I could cover every possible challenge so please don’t take this post as if I’m trying to speak for everyone.

With all that being said, once again, imagine being on the spectrum and all the potential challenges this world brings. For a person that has sensory issues to noises imagine the strength it takes to forge onward. In many of the schools I spoke to this year students opened up and stated their issues with the sounds of fluorescent lights. This is something that, if you’ve never noticed, would be 100% foreign, but right this second I want you to listen to your environment. If you are in an office I’m sure you’re hearing other employees, perhaps a printer, and maybe even the sound of overhead lighting. Now imagine being on the autism spectrum and having hyper-sensitive hearing. For many on the spectrum this is what daily life is like; a nonstop onslaught of sensory bombardment. While for some this can be too much and for others, often times, it can be overlooked on just how much inner strength it takes to simply go outside knowing that lights, sounds, or whatever the next unexpected sensory input could create the most uncomfortable of feelings.

Yes, I do firmly believe that our strength is something that is often overlooked. Strength is often measured in terms of physical prowess. Strength is often used in terms of horsepower for a car or bench pressing for an athlete. I mean, the athletic world is dominated by world records with the level of strength as the marker. With that being said, and in the world we live in, strength would most likely not be considered when doing something that, to most people, is simple, easy, and routine. But for us on the autism spectrum the seemingly simple experience of trying something new would be equal to making a run at a world record.

Strength is something that is hard to measure when it isn’t measureable. How can one measure something that isn’t in speed, weight, or height? I know I’ve gone on about that, but think about it. For us on the autism spectrum with all the sensory issues that may be there, and the anxiety that seems to follow us, I want you to try and measure the strength we may sometimes exhibit.

Fear is something that can follow us and sometimes strength can be a hard thing to come by. For some of us, including myself, the seemingly irrelevant fact of taking another route while in a car may create a level of alarming panic. After an event like this I may have the fear that every time thereafter the same situation (taking a different route) will happen. This is a feeling this is constant and can feel overwhelming. And yet, at least for myself, I will put myself out there without protest (okay… maybe a little protest.)

Why I hope I can convey here is that often times we lose track of not who or what we are but what we are not. I do this often. Lost in the whirlwind of life can be the simple fact that we have to be stronger to do what is easy for others. We have to be stronger to do something as simple as asking for assistance for something that may seem overly easy. We have to be stronger to get the strength to open up that front door and take on the wonderfully wild world we live in. Some of us are stronger than others and I firmly believe that the more we understand ourselves, and the more the world understands us, the greater our strength. One thing, going back to those world records I talked about, most world records are individual but for us on the autism spectrum we sometimes need a collective strength of those around us. It can be hard when things are going awry, but sometime, I hope, you can step back and see just how much strength we have.

The Great Defeater

2013-05-31T05:42:00.000-05:00

Of everything I've written and haven't written there is one challenge that, at least for me having Asperger's, is above all others. This is something everyone has whether they are on the autism spectrum or not, but for those of us that are on the autism spectrum this one thing can create problems that can cause issues across the board.

Writing about this topic started when I saw the review from yesterday's post. I've gotten away, I feel, from writing about what's going on internally and this "Great Defeater" as I'm calling it is something that, from the outside, can not be seen and perhaps can't be understood as well. This great defeater has a word and it is known as anxiety.

Why is anxiety is so bad? It's something everyone has, right? So if so, why does it seem to be overpowering for us with Asperger's? I can't explain what it is like to be normal and have anxiety, but the way it wreaks havoc with my brain is something that, unless you are on the autism spectrum, I'm not sure you can truly appreciate the challenge of it.

There are so many examples in my life that anxiety played a major impact in the events of my life. I may share some examples, but first let me explain what it feels like. So often, when something isn't known or things don't go according to plan anxiety starts to creep in. Why does this do? My body and sense are overly-sensitive and I am hyper-sensitive to my surroundings. This is something that can't be turned off. How can I compare this to something that anyone could appreciate? Think of it this way; let's say there is a door that leads into a room that has no light. You are at the door frame wondering if you should go in as you do need to cross whatever room is within the darkness to reach the other side. There's a guy near the door that informs you that, "the dark room will create some pain." Okay, that's fine, but how much pain is "some"? Also, within the darkness you hear some screams, and some sounds that sound like an animal but you are fully confident. Yet, at the same time, there is a laughter that is out of place. What would be going through your mind at this point in time?

This is the essence of anxiety, at least for myself, living life on the autism spectrum. This dark room I mentioned has no concrete information on what is in it and whether or not it will or will not be bad; the only thing to go by is some passerby that says it may hurt and all the sounds going on within which means the imagination is the only thing that can fill in the blanks and a lot of us on the spectrum, despite not being the best at imaginative play, can have a vivid imagination.

It is amazing how fast I can go from all's well to red alert. A good example is this; at least once a month I'll hear a car accelerate hard from a stop sign. The sound of the rapidly accelerating engine is often, at first, not able to be distinguished. This sound often times sounds just like the start of a civil defense siren. My brain works so fast that I instantly begin to wonder how bad of a situation is about to unfold. An attack? A tornado? Something worse? My body instantly goes into a hyper-defensive state and I'm prepared for anything. A few seconds later the engine becomes distinguishable and I realize there is no crisis happening, but my body remains tense for some time thereafter.

I'm calling anxiety "The Great Defeater" because I'm beginning to believe this is near the top, if not the top, of the list of things that causes the greatest struggles day in and day out. Imagine having every change in the environment creating a panic like I mention with the simple sound of a car screeching away from a stop sign.

This also wears on me socially; anytime someone has a tone that has a hint of aggressiveness, passive aggressiveness, or any other emotion that I am not expecting I instantly go into a state of panic as I try to analyze why this person is mad, how mad they are, and how much it's going to hurt me. Once again, this isn't a choice by myself.

Another aspect of this is that the more negative experiences that happen the more and more vigilant I will become. This is only natural as this would happen to everyone, right? I mean, if there were a light and every time you touched it you got shocked you would get more and more timid each time you had to touch it. So too is the way my brain works, but since often times I can't see that proverbial lamp I have to be prepared for it. Perhaps this level of anxiety I and others on the autism spectrum experience is our way our systems compensate for our inability to see things coming socially. I think this makes sense, right? I hope. Where most people can see danger coming I can't so therefore my body over compensates by fearing more things than it should and also fearing them with a greater fear than seems needed. This leads to something I hear all too often from those on the spectrum when they tell me, "I just hate it when my parents tell me, 'don't worry about it' because it's all I can do." For those of us that have fears, or phobias if you prefer, they tend to be amplified. To tell us to "not worry about" is like telling a fire to not be hot. While to the normal brain the fear, anxiety, or whatever else you'd like to call it may seem irrational to us it is perfectly rational and makes perfect sense.

So why is this the "The Great Defeater"? Living with this day in day out may, and I say may because, "if you've met one person with autism you've only met one person with autism" so living with this day after day may make a person withdraw; one would withdraw to an environment where fear isn't going to control them. The work place is a place we struggle and often times it's fear and anxiety that gets in the way and it is this fact that is the inspiration to calling this the great defeater. I've been there, I've lived this and it ruled my life. And on top of all this, and there has been a lot, hasn't there, and on top of all this we may seem perfectly comfortable on the outside. You can have no idea just how difficult routine events in life can be for us because of this reactionary anxiety. You can have no idea at all, but after this post I hope you have a better understanding.

To Write a Word

2013-05-30T16:48:00.000-05:00

When I started out on my writing journey back in 2005 I had no idea if anyone outside my dad when ever read my words. There was a thought though and that was, "If I write a word and no one reads it does it still matter?"

As I continued writing my book Finding Kansas I kept having that thought, in a way. I was writing simply for the sake so my dad could understand me a bit more, but at the same time I wondered whether or not my words would ever be read by just one other person because that's what I wanted; to simply be understood.

I've been tremendously busy this year and I feel my blog has slipped quite a bit. Also, I've wondered what the point is because what if no one reads it? Why go through the work (a normal blog post is usually several hours of pre-thought then the actual time to write it) if no one is going to read it?

There's a trap here; if a person wants to be read but doesn't start the work because they don't know if anyone will ever read the final product then, of course, they never will be read. Writing is a magical art form that allows you the reader to get a glimpse of another person's world. My goal when I started was just that and when I started I never envisioned the day someone else, a complete stranger in this world, would be able to buy, hold, and read my work.

The point I'm getting to today is I read something that brought me to tears today. It made me think back to all those nights I stayed up until sunrise writing about my life, my hopes, my dreams, and my fears. It was the boldest journey I ever took and today I read a review on Amazon.com. I have no idea on if a review is shareable but I'm going to do so anyway because I don't know if I've ever been humbled and honored more than what I was when I read this:

I read a review where someone said the book was dull and does not deliver on its promise of enlightenment. I HAVE to believe that this person is a scholar looking very superficially for some sensational, spine tingling account and not someone who loves and Aspie and has first hand experience. My 15 year old son has Asperger's and he is exasperating, frustrating, exhausting, overwhelming and depressing. . .but not so much on the "spine tingling" for those readers looking for that type of thing. Having Asperger's is not thrilling or exciting most of the time. Aspie's are trapped which is a word my son has used for years but it took so long for me to understand that. Life is grueling for him in a way that is difficult to fathom. There are parts in this book that might sound melodramatic if you hadn't heard it from your own child's mouth for years. The question still remains: Why? Why does this or that upset you? Why do you feel this way or that way? It's still unclear to me but that is ok. Clever analogies like the one about he film reel goes further than anything else I've read or researched to help me understand my son.

Aaron's wish was that people would read this book and it would change them has been fulfilled. It does. It will. I don't know what else you could ever hope for but a book like this. I've read so many but none of them fit my son. This is the first book I've read that talks about a boy who looks normal, often acts normal, does not flap or have any tics, can likely make eye contact, is able to have riveting conversation, is super bright and talented yet is unable to function (get a degree, hold a job, have a relationship etc.) We used to say our son always "took it to the mat!" meaning that if he didn't want to do something there was absolutely, positively NOTHING you could do to make him change his mind. He would rather be punished, yelled at, spanked, and it seemed he'd even rather DIE than to do the one tiny thing you asked him to do. Why go through THIS much drama? Why take it to THIS level? For the sake of not sleeping on sheets? Or not bathing? What is the big damn deal???

Well we may never know what the big damn deal is, we can only know how it may feel to our son. If it will not cause him harm and it means that much to him then fine. Sleep on top of the comforter with another comforter over you. Personal grooming? We will keep trying but a Don Juan our son is not. LOL. This book offers the very MOST you can ever know about Asperger's! Somehow Aaron has found a way to get it out and let us in and I am so grateful.

Credit to Aaron's father as well for understanding so much, so fast (or at least faster than my husband and I). Reading this book, particularly the parts about hating school and the father's dependence on the "--But your son is soooooo smart" comment to help ease the blow of all of the negative comments made about his son's behavior rang so true that it begs the question. . . .why does it still take SOOOOOOOOOOO long to diagnose Asperger's in kids when their experience seems to almost form a pattern that should be more obvious?

Finally, I am glad that my husband and I have been able to accept our son for who he is and rather than force him in to uncomfortable situations because we ourselves do not find them uncomfortable (and we think he shouldn't either), we are able to use the past as a template for living and pay close attention to body language in order to avoid meltdowns. What I mean is that rather than try to cajole, force or train our son to enjoy or participate in things that are "fun" for others but create overwhelming stress for him--we simply AVOID those things whenever possible. After reading this book you will understand that this is a small kindness rather than a weakness in parenting a kid with Asperger's.

To the reviewer I don't know if you read my blog, but let me say this if you ever do; thank you! This is exactly what I needed to keep my passion fueled up. I've been feeling tired the past month or so and wondering if this is my true calling in life but once again I know there is nothing else that I could be doing more important than this so thank you.

Riding in the car

2013-05-29T15:34:00.001-05:00

After the cell phone dilemma of yesterday (all is well now) I am now headed to Pennsylvania for a USAC .25 race this weekend. I'm writing this from the car (obviously I'm not driving at the moment in case you were wondering) which it's car rides like this that I love.

I love everything about a ride like this and I always have. Car rides have always been calming for me as when as I was younger, when I had a bad day, my dad and I would do a lap of Indianapolis on I-465 and this always lowered my defenses and I would open up and talk. So too, now, I feel much more comfortable conversing with those around me when confined in a car on a cross country ride.

Why is this? For one there is consistency. What I mean by this is that there are no times in which a person is added or subtracted from the environment. We left with five of us in the car and we will arrive with five. This consistency allows me to build my confidence up. It's when there is fluidity in those who join and leave a conversation that affects my confidence. So when the people remain the same my confidence and level of comfort increases by the mile.

Perhaps there is something with the ride itself sensory speaking. I've heard from many parents that if their child is having a bad time a ride in the car is a soothing experience.

As for me, now, I've got another 6 hours of paradise headed to eastern PA. Most people would get tired of this, but I'm loving every minute.

A Charged Situation

2013-05-28T10:05:00.001-05:00

After a phenomenal Indy 500 (if you didn't watch you missed out on one of the most thrilling races flag-to-flag ever) on Sunday things, for me, took a sudden turn downward. Being at the race drained my iPhone battery so as I drove Ryan and his dad from Steak n' Shake to their hotel I plugged my phone in and it didn't register anything being plugged into it. I thought that maybe the issue was the charger thing itself so I didn't worry too much.

When I got to my sister's I immediately ran up the stairs to my room and I plugged my phone in. The result was the same; nothing. I then thought that perhaps it was that wall outlet so I ran down the stairs and plugged into another outlet and once again I got nothing.

My battery was under 10% and fear began to sink in. Everything is on my phone; my contacts, photos, e-mails, calendar. The question everyone asked is, "do you have it backed up?" and the answer is a resounding "no." For one I can't back it up to my work computer and the whole cloud thingy is something I've never touched.

The battery continued to deplete its final charge and as I tried everything from different plugs, to tapping the back of the phone, and to downright encouraging it to work it was all irrelevant as the screen went black. It was all gone.

This was a major crisis. Well, technically it still is a major crisis as yesterday I got a new phone as, and this seems overly convenient, I became eligible for an iPhone upgrade two days ago, but on the new phone I had nothing. Sure, it's faster (you can't honestly compare the two the difference is so great) and can do things my previous phone couldn't but I still have nothing. No photos, songs, and my all important calendar.

Right after I finish this blog I'm headed to an electronics repair store here on the north side of Indy to see if they can get a charge on the phone that is dead. If they can it should be possible to transfer the stuff I so badly need transferred. This is more than just a little bit of information as my photos are the epitome of the associative memory system. My e-mails, as I'm spending a few weeks on the road has got to be setup, and my calendar, well, I live by my calendar.

In just a few hours I'm going to know if they're going to be able to bring my old phone back to life. Sure, my new phone is great, but with out all the stuff on my old phone it has no soul.

Annoying the Nephew

2013-05-23T06:30:00.000-05:00

For the longest of times I was the world's worst uncle. This was due to the fact that I was in such a bad place emotionally that I really didn't have any ability to, well, care. Times have changed, I'm in a better place, and now I firmly believe it is the uncle's responsibility to annoy their nephew. Of course, this has to be done in a tasteful and hilarious way and oh, my poor 13 year old nephew.

I'm currently in Indy for the Indy 500 and the various other events that precede it such as the USAC Traxxas Silver Crown series race this evening at the Indiana State Fairgrounds where I will be the assistant starter (mother nature better play nice!) so I am at my sister's house. Yesterday evening I ordered a pizza and was going to have it delivered but my sister convinced me that I should drive and get it seeing that it is just two minutes away. I, at first, said I was tired, or something to that effect, to which my sister debated and I had no logic to counteract her points so I got my shoes on and went. My nephew also wanted to come so into the car we went and we made the short drive to the Pizza Hut.

This Pizza Hut is different as it has a drive-thru. As we pulled in I heard the CD I had playing which was a collection of TV Game Show themes. Since this was playing I figured I could have a little fun, and totally embarrass my nephew at the same time. Win-win!

I switched the track to an up-tempo theme which was from "The Joker's Wild" (listen to a modern day version of it HERE) and, compared to today's music, it's different. I turned it up, put it on repeat, and finally when the door opened and the worker said hello my nephew couldn't contain himself. I think he was on the verge of tears due to laughing so hard which I don't know if he was laughing at me, at the situation, or at the absurdity of it all, but there was certainly a noticeable change in the drive-thru worker when he heard such an odd song being played.

After paying for the pizza he said it would be two minutes so I hustled to change songs. I had one chance to play the oddest piece of music one would hear from a car so I got my iPhone radio adapter plugged in and proceeded to play The Price is Right Cliffhangers Theme. Honestly, if you were beside any car anywhere I firmly believe that is the last song you'd ever expect to hear.

My nephew, as I cranked up this song, looked at me as if I had sunk to a new level; and perhaps I had. He then stared out the window trying everything he could to actively ignore the situation but it was no use as when there is yodeling going on normality just isn't easily found.

The window slid open and as the pizza box was handed to me a look of utter perplexity came across the worker's face. I'm usually not the best judge of facial expressions but even I could see that this person knew the song but couldn't place it. At this point in time I started laughing and grabbed the box and drove off before I started truly laughing. Not too many people have seen this, but when I find something funny I don't just laugh but rather I laugh to the point of pulling muscles and losing the ability to breathe. I got to that point on this one.

So that was my trip to Pizza Hut yesterday. It's a trip my nephew isn't going to forget for some time and I can't wait for the next misadventure I can put him through. I don't think he'll ever admit it but I think he secretly enjoys these rather odd encounters.

"Why Are You Here"

2013-05-22T05:00:00.000-05:00

First, let me say that writing is becoming increasingly difficult. I have a couple of thoughts as to why this is. The first is that I am so busy that my mind is not having time to think. My concepts I've created and most of my blog posts are created in the subconscious and I don't put effort into creating the work. Already this year I'm up to over 65 days on the road so perhaps this is a cause.

Another potential cause is that I've become a master and controlling my surroundings and becoming more apt at handling situations which are outside my comfort zone. What does this mean? The first part is that I've become a master at avoiding uncomfortable situations. Also, since I'm always traveling, I've become decent at the whole "live life on the road" routine. The second part is that I think I've grown by an unmeasurable amount the past 13 months or so, and maybe just in the past three months. What used to be a major episode is now just a part of life. Just five days ago I had a conversation with someone wondering, "Do I actually have Asperger's?" and this is a common question I ask when there haven't been any reminders. Remember, Asperger's roots itself socially and if one isn't in social situations how could one be reminded of it? That reminder happened yesterday.

I went to the doctor's office yesterday and this was my first time visiting one outside of the ER or urgent care in a very long time. Also, this was my first time visiting a new doctor by myself so I approached the sign in sheet very timidly and I signed it and right away the lady behind the counter told me that she could sign me in.

The process began and she got out sheet after sheet after sheet of paperwork and I felt as if I had just gone back to school after missing a couple days and I was being given all my assignments. Then she said that she had to confirm some information and she started to talk but then a lady came up to sign in. The office worker then stopped talking but the lady signing in stood still and didn't move and so too the office worker didn't speak to me. Eventually the worker who was signing me in said, "Do you need help" to which the lady beside me responded, "Oh, no. I just wanted to stand here."

Several awkward seconds passed as I was staring at the soon to be worked on papers that would ask me more health information than I would know and eventually the lady that came up left and the office worker said, "I can't speak to you when another person is up here due to privacy rules." and as luck would have it another person came up making the conversation a jerky one of stop and go.

During this conversation, or at least when it was going, I was very agreeable. I wanted it over as fast as possible and I wanted to get that paperwork done as quickly as possible. I got my chance to start working on it, but just as I did I was called into the back and some quick vitals were taken and into the room I went. I sat down and was asked, "Why are you here today?" Simple enough question, right?

What seemed to be the easiest question quickly turned into a state of panic. I had a moment of, "I think therefore you should know" so I, at first, got mad that she asked this question because she should have already known because I knew. This took some processing time and I glanced over and saw the unfinished paperwork looming and I looked back to her and my mind was blank; I tried to talk but nothing happened. I wanted to say something, anything, but I kept shaking my head as if to say, "I know what I want to say but my body and mind just aren't playing well together right now."

I don't think I showed it on the outside but on the inside I was crying. I knew it was a simple question and I knew the answer... and that's the kicker! I knew I knew the answer but still I didn't know how to respond to her.

Thirty seconds had passed and I still was spinning my wheels going no where and she said, "Are you new here?" to which now I was trying to answer two questions and I still knew why I had gone to the first place and then I glanced back over at all those new patient documents I had to fill out and I just about took out my copay money and left. I tell you, I have never been closer in my life to just giving up and leaving without saying a word than I was right then and there. It was all too much.

She then asked a third question, "so since you are new here is this an initial visit then?" and quickly I responded with, "Yes, I think. Something like that. Yes, um, yeah." and that was that. She left, doctor came in, and in the end I don't think those papers got filled out 100%, but all in all this was a reminder that Asperger's is there. I've become rather good at avoiding situations like that, but once it presented itself I locked up. And what makes locking worse is when I'm aware it is happening because then I try to "think harder" and nothing good comes from that and the end situation is that which happened. Thankfully now I do have a doctor I can go see, but I wonder this; the next time I go will I have to fill out all that paperwork I left unfinished?

Video of The Best Day Ever

2013-05-20T09:33:00.001-05:00

This video is from last Monday at the Indianapolis Motor Speedway and is of myself being the honorary starter for practice.

Answering the Caller

2013-05-17T05:30:00.000-05:00

Going back to the radio show on Tuesday I did on WWKI I had a caller call in with a question regarding her son and the ability to talk to the doctor one-on-one and the inability to socialize in a school setting. I gave an answer, but I don't think I gave the perfect answer so I'm going to take this blog post and give a proper answer.

First, this is something that I have struggled with as well. If anyone ever gets me into a one-on-one conversation I usually am rather able at having the conversation without issues. Should another person join the conversation the issues will mount as I have a harder time being able to process all that is going on. Should yet another person join I will become almost unable to chime in with any of my thoughts and anything more than three people in a conversation and I will have a hard time uttering a single word. Since this is true a one-on-one conversation with a doctor is easy where as anything in the school setting would be much trickier.

Also, speaking to a doctor is a much narrow range of communication. What I mean by that is that a conversation with a doctor is usually going to be just heavy in facts. On top of that, after a while, the conversations can become a routine. A doctor may ask the same questions so it becomes almost scripted. In a school/group setting this is harder to achieve with the range of conversation being much greater and a routine much harder to achieve.

Yet another aspect is timing. This is one thing I still struggle with and timing is so critical. What timing is, by my definition, is the timing of when to speak. When talking to a doctor the doctor will speak, ask a question, and wait for a response. The doctor may also give ample time for processing. Others though, especially in a group setting, will have a much more fluid and ever changing conversation. To speak, one must be somewhat aggressive in getting their words out much like trying to navigate a busy four-way stop situation where drivers aren't really obeying the protocols. I will wait for that right moment when no one is speaking, but each time I get ready to speak someone else beats me to it.

All in all these issues can be rather confusing for a doctor because, should the doctor only get the story from what they are seeing in front of them right then and there, it may be hard for the doctor to get the complete picture. Let's take myself at a young age; I could talk to the doctor just fine. I could talk about the weather, or body temperature, and I was ahead of my years. Why would the doctor think there was anything wrong? This is a rather common story! I'm not sure what future book I have this in, but I do call it a "problem with Kansas" as, if a person only sees us in Kansas then it will be practically impossible for that person to think of us as having any challenges at all.

I hope I answered this better than I did on the air. Perhaps my answer was decent on the air, but I feel this is a much better painter picture than what I gave on Tuesday.

Radio: Then and Now

2013-05-16T11:16:00.002-05:00

On Tuesday I was in Kokomo, Indiana and was once again on WWKI's morning show, "Male Call." (You can listen to the broadcast by finding May 14th on their podcast page) I was originally on that show in April of 2012 while on my nationwide tour and it is amazing the difference a year can make.

Last year I was beyond nervous as I got to the studio and when the show started the only thing I could think of was, "don't say the wrong thing... don't say the wrong thing." I believe the end result on the air was fine, but the internal anxiety I felt was great.

Having the experience I had last year I felt much more comfortable than I did the year prior; I wasn't shaking, I didn't feel ill to my stomach, and the nerves weren't causing me to yawn every 15 seconds leading up to being on the air.

With not being so nervous I actually enjoyed the lead up to being on the air and once the program began I felt much more at ease. I wish there were an easy way to compare the two, but I know, from where I sat, it was much better.

On my drive home on Tuesday, and my drive to and from Shelbina, Missouri yesterday (by the way, the students at South Shelby Middle School were AWESOME!) I thought about the interviews, then and now, and there's much more to this than just having done it once.

Yes, there's more to this than meets the eye and what I mean by that is that I've been doing a lot of things that aren't usually what I do. I've tried many new foods this year and I'm feeling more and more confident presenting. Is it the confidence in presenting that has bubbled over into other aspects of my life? Is it the confidence from traveling as much as I have and being much more sufficient in doing things on my own? Perhaps a combination?

Whatever is going on I can feel the growth in the past year. I know if I have practice, or have done something once it is easier the 2nd time, but the difference in the way I felt at WWKI on Tuesday is much more than just having a little bit more experience.

As for now I will continue to wonder about what the difference is and I will have my time to think about it as I have a presentation in a bit then a 5 hour drive to Nashville for a USAC .25 Generation Next series race. Over 200 cars are registered and it should be a great weekend (or in the least I hope it goes better for me than it did last year!)

My Indy Experience

2013-05-14T12:07:00.001-05:00

Throwing the green yesterday was the biggest honor of my life! I hope to have a video of it sometime this week, but here is a photo that Chris Jones of Indianapolis Motor Speedway took. Also, IMS wrote a story about me and it can be read at http://www.indianapolismotorspeedway.com/redbullgp/news/show/52156-aspiring-flagman-lives-his-dream-at-ims-raises-autism-awareness/

"Are you that boy that waives that flag on that rock?" The Story of My First Flagstand

2013-05-13T05:15:00.000-05:00

After you watch this and you want the story of the flag click the video within this post.

And here is the link for the live video of practice http://www.livestream.com/indycar The start time is noon US Central time. I'd think the stream would be up beforehand.

The Green Flag of Flagging

2013-05-10T12:23:00.000-05:00

I have been super excited this week for this upcoming Monday when I am the honorary starter for the day of practice for the Indy 500. I've been thinking about what to write over and over and the only thing I can think of was what I wrote back in 2010. This was originally part of part 1 of my "Schumi and me" blogs, but I felt it right to run it again.

Also, another quick note. Yesterday as I drove home from my SEMO tour I drove past the 2nd track that I flagged at here in Saint Louis and I thought back to Frankie, who is mentioned in the blog, and I was so thankful for the chance he gave me to be his assistant... Well, I'll add more at the end...

My love of flags started early. I grew up in Indianapolis in a home that was just over a mile from the Indianapolis Motor Speedway. My dad was a pastor in Indy so going to the Indianapolis 500 was out of the question since Sundays were his primary work day.

My grandmother in Oklahoma City would always tape the race for me in and then send me the tape seeing that the race used to be on a long blackout in the Indy market. My first memory of the race was watching the 1987 race on tape. While most kids probably would want to watch the entire race, I kept watching the start over and over and over again. I think this could be one of the earliest signs that I remember that was a warning sign that I was on the autism spectrum.

But, why you ask, would I watch the start over and over again? It had nothing to do with the speed and danger of 33 colorful Indycars lined up in 11 rows of 3 all vying for position on the start. Nope. What I wanted to see was Duane Sweeney's twin green flags he waived to signify the start of he race.

I think it was a sensory thing and I loved it. I became obsessed with all things "flags." The colors moving about in the air was nothing short of bliss. Don't get me wrong, I loved the actual race, but I truly believe the initial hook for me was the flags.

In 1988 my dad took me to one of the many practice days at the Speedway and bought me a small souvenir checkered flag. I stood on the infield grandstand and waived that flag for the entire time I was there. I imagined what it must be like to be the actual flagman; the perfection needed and, of course, the grip (dropping a flag, I understood, was quite frowned upon!).

My dad's church was near the track, and I guess attendance was usually low on that magnificent weekend, but in 1989 I went to my first 500, and it was one of the biggest disappointments of my life. My favorite driver at the time was Al Unser Jr. and he and Emerson Fittipaldi got into a wreck that sent Jr. into the wall and Fittipaldi won the race. As mad as that made me it was not the reason I was disappointed. What made me mad was that we sat at the entry to turn two and I could not see the flagman.

Later in 89 my dad bought me my first real set of flags. They weren't big, and the sticks were fragile, but they were perfect for a six-year old. Those flags and I could not be separated on race days (or any other day for that matter) because I would flag along from home. My goal was to emulate the flagman that was actually at the race and it took some time and practice, but I became good at emulating the flagman, as well as hitting people with my flags as they walked by me. I couldn't help it, if the yellow flag needed to be waived, it had to be waived. (sorry mom!)

One of the biggest events in my life happened in 1990. Like I said, I loved the start of the Indy 500 because of the twin greens waived by Duane Sweeney. While Al Unser Jr. was my favorite driver, he wasn't my favorite part of the 500 as that title fell to Mr. Sweeney. My dad had a member of his congregation, Joan Petrie, who worked at USAC (the former sanctioning body of the Indy 500) and he asked he if she could get Duane's autograph for me.

On Thanksgiving morning she called my dad and said for him to, "Come over right away!" My dad thought it was an emergency so he rushed over and while it wasn't an emergency, it was major. She gave my dad an autographed picture of Duane (much like the photo to the right. This one wasn't the one I received, but it was the same photo. Change "John" to "Erin" and it would be the one I got) and then she said, "Wait a sec pastor, I have one more thing.

I wish I would have been there for that line of "one more thing" because I have heard my dad recount the story at least 1,001 times, but what happened next set me on a course for flagging stardom (if there is such a thing). Yes, what happened next was she turned the corner and got an item, came back into the room and gave my dad this:

This just wasn't a souvenir flag, or a set bought at the Speedway Museum. This was the real deal, his personal checkered flag. His wife made all his flags and when Duane heard about me wanting his autograph because I was a "BIG fan" he told her he was giving me this flag. She said she didn't want to make another one, but he insisted because, "He didn't have many fans." Since I received this flag I've only let winners of the race, and other key figures such as Donald Davidson, the track historian, who truly has one of the best memories on the planet!

In 1993 we moved to Saint Louis and in 1995 I started racing go-karts at the Saint Louis Karting Association. The story of my first race is recounted perfectly in my book so I won't talk about that, but what I will talk about is that I instantly hated the grease of racing. I have a minor sensory issue with dirt and grime on my hands and, sadly, engines don't change their own oil.

I suffered through half a year of oil and late in the season the club flagman at the time, Frankie, was getting old and some of the flags displayed did not match the situation. A 12 lap race once was 7, and instead of the checkered flag once the race ended on a blue (that means a faster kart is about to lap you). Seizing the chance I volunteered myself to be the assistant and keep track of the laps and hand Frankie the correct flag.

I was always older than my age so no one thought twice of me, a 12 year old, being be put into that position. By the following year the club's race director gave me the headset (we had a limited quantity) and you can see this in the picture. This is me and Frankie in one of the many breaks during the day and I must have been through with my races because my suit is no longer on. My race day was busy because when it was time for my race I would rush across the track to get my helmet and gloves on, and after my race I would rush back. I was a truly dedicated youngster!

On a scorching summer day in early August of 1996 the club told Frankie we "weren't racing due to heat" because of the troubles he had been having. They asked if I was ready to be the sole flagman. I had been ready since I first saw Duane Sweeney waive those twin flags back in 1987!

That first race was one of the biggest honors of my life. I knew that most places would not let a 13 year old flag a race. The responsibilities are great and there is no room for error. Mistakes can cause an accident, an injury and all movements must be precise. I was not yet diagnosed with Asperger's syndrome, but my mind loves the art of perfection and that first race went smoothly.

The following race I went back to my role as assistant and I was a little down. Frankie, not knowing I had already flagged a race weekend, asked me if I wanted to trade off races. He would do one, then I would do the other. He thought I was ready, and I took this as a sign that he was ready to step down. I think he was 80 years old and had been flagging races pre WW2!

He didn't step down and was eventually forced into retirement in the middle of the 97 season. At that time, at the age of 14, I was named chief started of the Saint Louis Karting Association and I held that position until 2008!

I am grateful I had flagging. When I was diagnosed with Asperger's syndrome in 2003 I went into a state of isolation. The only thing I really had was looking forward to the Sunday's that had a race. I had quit racing karts a couple months before I was diagnosed because it looked like I was going to make it as a professional driver. That never happened, but I had the flagging and I don't know where I would be without it.

In the original post I continued on and this was the building block to me becoming the flagman of the world's largest karting event, The SKUSA SuperNationals. However, thinking back to Frankie he could have said no to me as his assistant. The experience working with him has set everything in motion just like the flag Mr. Sweeney gave me. One thing about Frankie, I never knew his last name and don't know what became of him. This saddens me today because on that first day that I wore a headset and became part of a staff at a race track I could never have imagined I'd make it to the Indianapolis Motor Speedway. Yes, I know this is just an honorary position and it's just one flag, but this one moment has been 23 years in the making and come Monday I can assure you that it will be one of the best moments of my life. It's going to be hard to hold back the emotions as this one, singular green flag is much more than that; it's a tribute to Duane Sweeney, to Frankie, to SKUSA, to USAC, and to each and every person and organization that has given me a chance in my life.

A Puzzling Statement

2013-05-09T09:21:00.001-05:00

I had another two presentations at schools yesterday and I've noticed there's a statement I make that always gets many different reactions. For those that just see me in a presentation it is probably quite puzzling as I say, "Outside this realm of a presentation I am one of the shyest, quietest, most reserved individuals you will ever come across."

There are many reactions to that line. One of them is a look of one who is skeptical. And who can blame them? I can present with a profound confidence and am 100% comfortable in the skin I'm in and yet I tell them at the same time I'm everything but that. The second look is a sense of trying to understand what I just said. The third is my favorite; a small smile. It may be a small smile but it is an important one for sure. I make the point of saying that when I was in school I was the worst public speaker in the world and yet, here I am today. That smile tells me something big and that is there's a droplet of hope that has been churned.

Of course, I could be wrong about all of this because I am not the best at determining what facial expressions mean, but I feel I might just be right about the reaction to my puzzling statement.

A Day I've Waited Forever For

2013-05-07T05:00:00.000-05:00

I announced this on my Facebook page yesterday and I don't think I've ever been more excited about anything in my life than I am for what is to take place on Monday.

This event has been a year in the making and started with this video blog from last year

After I finished making the video I was told, "Keep in touch, we may just want to have you be an honorary starter for a day of practice next year." And guess what... They did!

On Monday, May 13th I will be the honorary starter for the third day of practice for the 97th running of the Indianapolis 500.

Being the honorary starter may not seem like much. In fact, I won't even be in the flag stand (I will however be on a platform on the pit wall very much like Pat Vidan use to have) and I have just one flag to waive and that is the green. I waive flags all the time and I can't even guess how many times I waive the green, yellow, white, and checkereds on a typical USAC .25 or SKUSA weekend. This isn't a typical weekend though. I get the chance to waive a flag at racing's most hallowed grounds.

A book I used to read and reread written by the late Tom Carnegie when I was younger, Indy 500: More Than a Race had many pictures of both Pat Vidan and Duane Sweeney who was the chief starter of The 500 who gave me the checkered flag in the video. I spent many, and I do mean many, days and nights dreaming of the day I could be at the track, in the month of May, with a flag in hand. For some people that get the chance to be an honorary starter I'm sure it's a rush; and why wouldn't it be? To be track level with the flag that starts the day is nothing short of amazing. For myself, though, this is going to be a moment that will be a lifelong dream fulfilled. It will be a singular moment that will never be forgotten and may never be duplicated. I have no idea what to expect when something has been long been dreamt about comes true. That's what this is for me. This isn't just one flag, this is playing a very minor part in what I consider to be one of the world's greatest sporting events. This is something that, even at the age of four when my dad bought me a novelty checkered flag on a day of practice I thought of. Oh, I did a number on that flag as each car passed at over 200mph and I loved thinking that maybe someday I would be the one with the flags that matter. Come Monday, for one green flag in the morning, I will be.

"Why are you here?"

2013-05-06T16:47:00.001-05:00

I just got presenting at a school here in Van Buren, Missouri. I had, perhaps, the warmest reception to a presentation ever as a group of students chatted with me for half an hour after the first of my two presentations.

My 2nd presentation was to the 4th and 5th grade and I had one of my more interesting questions. The question was, "Why are you here? I mean, there are far bigger schools and cities out there." This question allowed me to use one of my mission statements and I was more than happy to answer. I said something along the lines of:

Yes, I know there are bigger schools, and cities out there and just five months ago I spoke to a school in Chesterton, Indiana that had 1,100 students in one presentation, but autism awareness isn't just about big cities and big schools as it is needed everywhere. Every person on the autism spectrum deserves understanding and it doesn't matter if it's in a big city like Saint Louis or a town like Van Buren. The need is everywhere and I want to be in as many places as I can be in!

I don't get caught up in giving answers all that often, but this question has hung with me for the few hours that have passed. I know I'm proud of my numbers that I've spoken to, now over 24,000, but while I, or anyone for that matter, could bask in the size of the number the needs aren't limited to groups of 1,000. The need isn't just in cities, but the need for awareness and understanding is everywhere. It doesn't matter where as each person reached is the most important person ever reached. I firmly believe this and this is what drives me and I'm so thankful for days like today in which I am able to spread the word of understanding.