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Monday, April 30, 2012

The Final Day of April

This is it... Today is the final day of Autism Awareness Month and I have to ask, what does this mean? I am thankful of the awareness that is driven up during this month, but does this mean that once tomorrow hits autism is simply something that affects "other people" in the eyes of the general public? For the unaware, is April "Autism season" sort of how baseball and football have a season?


For those on, or those who have family on the spectrum, there is no season as every day has the chance of being a struggle. Be it April 3rd or October 19th every day is autism aware day for those living with it.

Where are we going though? I am starting to wear down physically as it has been a wonderful grueling month (I'm not complaining one bit) but I'm also wearing down mentally trying to figure out how I can use words in a better way to help the awareness and understanding cause. Touring the country I've learned the need is so great and we've seen that video which stresses the immediate need, but what's going to happen tomorrow? Will autism slowly fade out of the news and will our human stories be once again relegated to numbers, such as 1 in 88?

One of my big messages is, "If you've met one person with autism you've only met one person with autism" and perhaps some can be critical of my writing style, but I'm never going to say, "Do X because it works" because what works for me may not work for all. This, right here, is the most important thing, I feel, teachers need to know. When autism is not simply a number and stories run on the news about various people on the spectrum this helps make the puzzle a bit clearer. I think in April this happens more frequently than the other months. Yes, in the other months, from what I've seen, autism, often times, is simply spoken on the numbers terms and when a whole spectrum condition is reduced to a number, well, how can one possibly learn the human story behind each "1" person with autism?

My hope, and passion, is that after today the push towards full understanding and awareness isn't lost. Numbers work great when mentioning the alarming increase, but the story is more than that; we are more than that! We on the spectrum have so much to offer and have so much potential but this potential can easily be squandered without proper awareness and understanding. My fear though is that autism once again slides back into the realm of numbers and that the human element, in all of its potential be it the achievements and challenges that come along with autism, are lost.

So, with all this being so, I don't see today as an end by any means. If anything today is the day that the real challenge begins, at least for me, because the voice needs to be louder, clearer, and sharper. Tomorrow the blue lights will be switched out, Autism Awareness Month signs will come down, and the general public won't be exposed to autism the way they had been for a month. For those like myself, life with autism will go on just the same. I'm glad that we do have a month, and maybe I'm just a tad bit too ambitious, but this is when the real work to raise awareness and understanding begins because I am going to continue to put everything I've got into making sure that autism isn't simply a number but rather a true spectrum with varying gifts and challenges.

Friday, April 27, 2012

The Follow Up

The entire ride yesterday from Vegas to San Fransisco was filled with deep thought as I thought of everything I wrote in yesterday's blog. How is it that anything like that [the video mentioned in yesterday's blog] can happen? I mean, the year is 2012 and haven't we moved onward to a better place where acceptance is the norm?

I went through a phase in the middle 2000's that I believed, "People are mean, evil, and unpredictable therefore I want nothing to do with people." Over the course of the years I believed it wasn't people, but just a "few." Now imagine what would have happened to me during that time if a similar situation had happened to me. Would I have realized that the vast majority of society wasn't simply mean or out to get me? I would say probably not.

The autism spectrum is such a unique thing because to the uninitiated they may think that we 1. have no emotions 2. don't care and 3. aren't listening. All those are false and yes, I did say unique, and that's because the reactions around us mean so much.

Society can do so much good, or so much harm to those on the spectrum. A bad experience isn't simply forgotten, at least in my life, and all it takes is one bad experience for the mind to think, "Okay, since I went out and people were mean this means people will always be mean." If you were powerless to defend yourself and powerless to ask for help you can see why a person on the spectrum would put up a huge defense to avoid such situations.

I've realized if I continue writing I will write a mirror post to yesterday's and I don't like repeating myself. However, I feel so much bubbling anger and passion write now. I want to do more but I don't know how. Yes, I realize I'm in the midst of this nationwide tour (presentation in San Fransisco tomorrow) but I want my voice to be louder, my concepts clearer and all in all I want to do more despite the fact that I don't know how to do more. My passion to raise the awareness, understanding, and acceptance of autism is about as personal as a passion comes. I don't want to sit back and watch the world go by idly. The odd thing is is the fact that I am on this tour and yet I feel as if I need to more. As you can see my thoughts are going around in circles.

Since I am going around in circles I best end this post year before you get 20 paragraphs all saying the same thing.

Thursday, April 26, 2012

Dear World...

Dear World,

Each time I write something I never know if anyone is going to read it. Right now though, I very dearly want this to be read because I've never felt so strongly about something. Yes, right now there is a video circulating the internet regarding a teacher bullying a student and I have never been more sick about something than that, and it furthers my passion to continue to raise awareness and understanding.

So why do I write this to the world? Because it is up to you, the world, to make the difference! We on the spectrum often times need support. And sometimes we are unable to speak for ourselves. With that being said, we can be easy targets. There's a misconception out there that people on the autism spectrum don't have emotions or feelings and this couldn't be farther from the truth.

I'm in the midst of a nationwide tour I have met so many amazing teachers and professionals! They are absolutely amazing, but it only takes one. Yes, it only takes on person to cause major harm. And for us on the spectrum we can't simply share our emotions and time doesn't "simply" heal the wounds. Take for instance a thing that happened to me last August.. That event was very much a bully situation and I have never felt more insignificant and powerless in my life. Thankfully that night my dad, and bowling team, were there for me in all the right ways.

Right now we are in the middle of Autism Awareness Month and as the numbers of autism increase so too, I fear, will be stories the likes of which only the word "horror" can describe. To the unaware person they may think that the non-verbal person isn't listening or doesn't care how they are treated. Sadly, the person very much does and is unable to do or say anything. Imagine that! Imagine living life for one minute in a situation that you can not say or do anything that will alert the world to the fact that someone has mistreated you. No words, no points, nothing.

So world, what are we going to do about it? I've written many posts regarding using the terminology of "the one" but in this instance I want to say we need to "fear the one." Yes, we need to fear that one person who is going to take advantage or bully the person on the spectrum. Since I feel that the concept of time is different for us on the spectrum, the abuse, the bullying, or whatever it may be is not simply going to be forgotten. Even if 99% of everyone is compassionate and understanding we still have 1% that can cause great harm.

As I said, I feel strongly on this; maybe too much. I do what I do to raise awareness and understanding because "understanding is the foundation for hope." I felt hopeless and powerless for many years after finding out about my diagnosis and during those years I don't know if I would have recovered from any sort of bullying episode.

What I am trying to get at is that you, the world, need to help us. Sometimes we can't speak, sometimes we can't state our needs, but if we are in trouble we need your help. This goes for all ages! At one of my presentations I heard a story about a class that had a person with autism in it and one student tried to pick on the person with autism but the rest of the class would have none of it. This is what we need world! And I'm not saying we don't have it, but all it takes is one event to leave a unfortunate scar.

So can we do it world? Can we continue to educate the world and create more awareness of the needs of us on the spectrum? Can we minimize the horror stories? The end of Autism Awareness Month is fast approaching and when it passes will the world tuck us away and wait until next April before they open their minds? My passion is bring and end to this, but I'm just one person. So world, one last question: if a situation comes up that you can help a person on the spectrum will you continue on your way or will you see to it that right wins out? If you are the type that will see to it that right prevails you may not be thanked by the person, in fact you probably won't, but trust me when I say that the amount of thanks being felt by that person on the spectrum will be at a level you can't imagine. So world, please be our advocates when we need one, don't turn a blind eye, and never let yourself fall into the 1% I mentioned earlier.

Wednesday, April 25, 2012

Another Trip Down Memory Lane

My tour across America continues on and today I am back in Las Vegas. It's been odd just how much I've been in this town during my life be it for the SKUSA Supernats, going all the way back to the first IndyCar race here in 1996 at Las Vegas Motor Speedway, or the time I was an instructor at the Derek Daly Academy.
 Before I was an instructor though I was a student there and back in the first week of November in the year 2000 I came out here for a class as a dreaming 17 year old sure that I had what it takes to be a race car driver. When my dad and I came out here we stayed at the Circus Circus and several nights ago when we [Rob and I] were in Denver he noticed an ad on the internet for very cheap rooms. I jumped at the chance to stay at where I stayed back then and being here at the Circus Circus once again has rekindled many memories much like my trip through Limon last week.

To be honest, this place hasn't changed a bit and I can almost feel the emotions I felt the first time I walked into here. Oh, wait a time that was! My nerves had never been higher because I was worried about so many things; would I be able to handle the sensations in the car? Also, and I wasn't diagnosed at this point in time, but I was highly concerned about how loud it was. I was sure I was doomed to failure and that after one day I would make a mockery of everything that is proper driving.

As I was checking in I saw the bench I sat in back in 2000 and I was in awe of all the lights and sounds, but I was focused unlike any other point in time up to that point in time in my life because I didn't want to fail at the race school. You see, I had been racing karts for five years and had never driven a proper race vehicle, and on top of that I had 15 minutes of manual transmission experience and it was a very rocky, and grindy time at that.

I barely slept that first night and the next morning my stomach felt as if I had 100 tightly wound rubber bands around it. The entire drive to the Las Vegas Motor Speedway complex was the most tense drive, or rather ride as my dad was driving, of my life. Yeah, I know I've said "most" and "my life" several times but that's where I was in my life. A lot was riding on my performance because if it was obvious I didn't "have it" then what would be the point in continuing to dream? So with that being so it felt as if all 17 years of my life was leading to this and the following two days.

When I got to the academy I stood in awe as I saw the Formula Ford like cars being prepped. This was my dream, my life was leading to this point and I knew this was the start of the rest of my life. Talk about adding pressure to myself!

Walking through the doors was like walking into the middle of a dream; everything was so crisp, clean, and perfect. After some paper work it was three hours of classroom stuff and then it was time to strap in and experience a real race car. Of all things I've done in life there hasn't been a time I felt more secure and safe than being strapped into the five-point harness of that car.

We drove our cars on the public road to the track and a couple times I slowed down so I could put some power down and I was in shock at how much force I could feel. At first it felt like it hurt, but after 15 minutes on the technical oval I wanted more and as the 2nd day began and we hit the 1.6 mile road course I got it.

Each night I remember being in bed wondering what the future would hold. It's so fitting that I am here now because back then, on that third and final day, I showed true speed and was told that I did indeed, "have it." Do you know what it's like to dream about doing something and then to be told that you have the skill to do it? After hearing that leaving the Derek Daly Academy on that final day was one of the hardest things I've ever done because I didn't know if I'd ever drive a car like that again and it was such a euphoric experience. I'll be honest and say I'm glad I had my very old pair of sunglasses on because I was an emotional wreck leaving the track on that final day.

And that brings me to where I am now. After that experience in 2000 I would be back in 2001, 2002, and then as an instructor in 2003. All that time I was getting better and better behind the wheel and it looked as if I was getting closer and closer to truly making it professionally. Of course that didn't happen because you are reading this today, and back then, when I originally stayed here at the Circus Circus, that was my biggest fear. I had many sayings, one was, "If I don't race there is NOTHING!"

If there is one thing I feel now, being back here, it is that everything worked out perfectly for me. If I had not been so close and if I didn't "have it" then the pain of everything wouldn't have been the same. If that had been so would I have been as depressed? And, if I weren't so depressed would I have started to write? And obviously, had I not written anything I would not be here today and I would only be living for myself perhaps helping no one. How would the world have gained anything from that?

12 years ago I lived my dream in Vegas and you might say that getting so close was cruel. Perhaps it was, but it had to happen. I realize that and while yesterday as I walked the halls of Circus Circus I felt that anticipation of the future I had back then. I can feel all the emotions I felt as that naive, undiagnosed 17 year old. However, I feel that exact same sense of emotion right now, but for a different purpose. You see, I have a presentation tonight here in Vegas, and many more after that in other towns. 12 years ago I thought about myself and how big I could be in the racing world, but now it isn't about me but rather giving the world the terms and metaphors to explain the autism spectrum. What I am doing now, and what I am capable of, is light years beyond anything I could have imagined when I first came out here as a student in 2000. Yes, it's good to be back here as all those emotions have been rekindled, but as with the first time I came out here I once again am living a dream, but this time it isn't about racing and it isn't about trying to shave a tenth of a second and apexes. Instead, it is about the race to spread as much awareness as understanding as possible and what a great race this is to be a part of!

Tuesday, April 24, 2012

A Champion?

I've known about this for a couple months, and I think I made reference to it a couple times, but I finally have seen it on the internet so I know it's true! Well, I did know it was true before seeing that, but I wanted to be able to show it before I broke the news. What am I talking about? This link has the news that I am one of the three "2012 Mental health champions of Missouri."

Going back a couple months when I got the phone call, then e-mail telling me I was receiving this award I didn't know what to say or how to take it. I mean, I didn't start writing to get an award (and to be honest, I never intended it becoming a book) and I didn't become a speaker on the matter to receive any type of award either. Because of this I read and reread the e-mail trying to make sense of it.

I have a hard time, and always have, putting stock in what I can do. I don't think anything I've done is special because I simply do it. I began to write as a way of expressing myself on the emotional level because doing so with spoken words was impossible. When I started writing in 2005 I couldn't simply say, "This is difficult because..." or "I need sameness in my life because..." I think I always knew the answers to those questions but I didn't have the words to say it. After finding writing as my voice I could finally express myself. But who was I writing too? Because, as I said, I never intended on being an author.

To put simply, I just wanted to tell my dad who I was and why I was. I knew on this blog I've said this many times, but for those that are new it is important to know this; I'm an author by accident. Maybe that's a good thing because there were no thoughts such as, "Oh, people are going to love this line!" All of my writing was/is a straightforward honest look at myself. So with that being the case it is hard for me, edging on the border of impossible, to be able to understand how it is special in any way. I say the same thing about my presentations. Almost 10,000 people total have attended my presentations over the course of two years and in it I talk about the concepts put forth in my book and usually the reception is very warm. Again, I'm always confused on this because public speaking is something I NEVER THOUGHT I COULD DO. Yet, when I was given the chance I felt I had to because society needs to know. Why? I believe "understanding is the foundation for hope" and if society has a better understanding then I firmly believe that our potential, for those of us on the autism spectrum, will be better realized. Also, after I was diagnosed, the first thing I read about my diagnosis said that, "People with Asperger Syndrome will never have a job, never have friends, and will never be happy."

That was a mean, cruel, and perhaps the worst introduction to a diagnosis. Sadly, I believed those words and for so long I remained in a deep abyss and the word "depressed" didn't even begin to say how I felt. Perhaps the word "hopeless" is the best word to use because that's how I felt. So, as I said, when I was given the chance to speak publicly on the matter I put the fears aside because I hoped that through my words, perhaps, another person or family could avoid the pit of despair I was in for all those months after being diagnosed.

So does all this make me a champion? I still look at that e-mail, and that press release I linked to at the start and I wonder if I deserve the accolade of it. I see myself as just a small part of raising awareness and understanding. I didn't start out with any grand scheme of being published or being noticed for what I am doing. My passion is, quite simply, to raise awareness, understanding, and acceptance for the autism spectrum.

I've never done well receiving praise and this is the highest praise or honor I think I have ever received. Don't get me wrong, I am thrilled to receive this honor, but at the same time when it is hard for me to understand that what I am doing has a high merit it all seems so confusing. In any case though I know it's a big honor and all the way until the banquet in June I will be wondering what, exactly, I have done to deserve the title of a, "Mental health champion of Missouri."

Monday, April 23, 2012

I Thought I Was Wearing Down but Kansas Comes Through

As the previous week was coming to a close I was starting to get very tired; having so many presentations in one month along with the nearly 5,000 miles we have driven will take a toll on anyone. With that being so I was worried about what my energy level would be for the SKUSA race in Phoenix.

The weekend's forecast was hot, hot and HOT. How hot? Sunday's forecast read out at 106! However, it all started Friday and my weekend didn't start out all that well as I found out I would not be doing the television interview on Saturday. I don't take disappointment well and I found this out right after lunch, but I had to keep going and focus on the on track action at hand. This was rough but I had no other option and between sessions on track I was thankful I was at the track because the shock of this disappointment was minimized.

Saturday came and it didn't hurt all that much that the morning came and there was no television interview. Perhaps it was the heat, but I actually didn't care as I was simpy too tired in the morning. As soon as I thought about it the time for racing began and I became engrossed in the job and by the end of the day I was about as tired as I can ever remember, but I was ready for more.

Sunday was a great day and was a smooth race day. During the breaks we had at the track I thought about all that has happened this month and it al seems like a blur. Saturday night I looked at my calendar journal and had trouble fathoming the fact that just three weeks ago I was in New York City. Since that time I have met so many great people on my tour and hopefully my stories and presentation have made an inpact.

Halfway through Sunday I found my 2nd wind... or rather 15th wind for the month but I felt so alive. As I said, I felt as if I were wearing down but despite the heat and the work I was fully energetic. I can remember the exact point in time I realized this and I had a huge smile on my face and I said, "Ha! The power of Kansas at work." and it is true. I will admit I'm not the strongest person and I usually tire easily, but as I've proven to myself this month each time I think I'm down and out energy wise I come back. However, I'm sure today I will take it easy up until my presentation this evening.

Friday, April 20, 2012

The Open Roads Between Denver and Phoenix

To be honest, yesterday was long. It started at 5AM and by 5:45 Rob and I had left the hotel and we were making our way West on I-70. Much like I said a few days ago regarding Limon, leaving Denver in the morning was much like the trip to Vegas in 2003.

Anyway, the drive was going to be a long one and also a scenic one. As we got about an hour out of Denver a convoy of BMW's passed us. These cars were tricked out all the way and looked amazing, but then an hour after they passed us we saw a line of them on the shoulder with a cop car behind one. Something like this may not seem like a relevant thing, but for me these are the things memories are made out of.

As with Rob's and mine trip to Las Vegas last year we stopped in Grand Junction to eat and since I like sameness we did this again. Also, this is the exit that had the "horses revenge" overpass. Well, while we were eating the convey of tricked out BMW's pulled in ate at where we were eating. Again, this doesn't seem like anything, but at that moment I realized that this moment, this moment with the seven or so cars and all their drivers, was a moment I will never have again. What I mean by that is that I will probably never see any of those people again and to them my existence never was, but to me just the fact that I was among them and saw them numerous times on the open road made for a quick connection. I was asked by an interviewer yesterday, "Can you, having Asperger Syndrome, feel empathy towards others?" I answered something along the lines of saying of course, but it's different. And I think my experience yesterday shows just that as I will always have a wondering about that obvious group of friends and what it must be like to be in a convoy like that.

The weather was odd for the trip as before we got to Grand Junction it was cloudy and snowy, but when we hit Utah the saw was blazing down with some great looking cottonball clouds filling the horizon. I was getting excited as we were going to be on roads I had never traveled before and this was by design. We had the choice of taking I-25 down to New Mexico and that would be interstate all the way, or we could take I-70 to some road in Utah that runs to Moab and take the back roads. We chose the back roads and the views were amazing. I was transfixed for most of the way as I find desert landscape like the one in the photo to be the best scenery of all. The hills, clouds, sun, and just everything made for what was a long day to fly by.

During the drive I was lost in thought thinking about the journey so far and how the start in New York City seems like a lifetime ago. It was only a little over two weeks ago and yet, for the 4800 miles driven so far and all the people I've met it seems like a lifetime. Why, just a week ago when I was on two radio stations in Saint Louis seems like a dream to me now. So, with all this, I was driving so content that I have this chance to make this tour in hopes of reaching as many people as possible.

So today I take a break from the presentations as I take to the track for the opening round of the SKUSA Pro Tour. Today is practice and tomorrow is going to be interesting as in the morning I have to go to be on Good Morning Arizona and talk about my book and presentation in the Phoenix area Monday night and then from there I will rush to the track and get there after it has been started. It should be an interesting day and weekend and I may blog during this weekend so stay tuned for updates.

Thursday, April 19, 2012

Drama in Denver

Last night I had a presentation in Denver. I went to where my master schedule sheets told me to go, but once there everything seemed to be wrong. There was a drama club practicing, a band making music, and a volleyball game going on. There were no signs for my presentation, and the few staff that were there had no idea who I was or why I was there.

With each passing minute I was becoming more and more hopeless; I mean, what's the point in a nationwide tour if no one shows up? 7PM came and my dad called me and instantly I thought of this ad from 2004 with Michael Waltrip:


So while I wasn't at the wrong track I was at the wrong location. Quickly Rob and I got to the van and I made a 30 minute drive in 24 minutes (go me!) and while I was late no one had left and actually an autism researcher was speaking giving info on the latest findings and answering questions.

I handled the situation nicely as I was just so happy that people were there! It meant so much to me that the audience hung around and waited the 30 minutes. Granted, my presentation didn't go smoothly as my computer decided to turn off during the presentation and then trying to get it back on proved to be a small challenge, but all in all I made the most of it and am thankful for the nice crowd and warm reception.

Today is a change of pace as we had to Phoenix. This weekend is the start of the SKUSA race season and I return to my position as cheif starter so that's where I will be Friday, Saturday and Sunday. I want to try and do a video blog from there, but only if it will work. The presentations resume Monday with a presentation in Phoenix.

Wednesday, April 18, 2012

The Crossroads of Life in Limon, Colorado

Take a look at this picture:





This photo may not look like much, but that seemingly random picture has a huge meaning in my life. Yesterday I drove from Topeka to Denver and the entire way I was waiting for the point in time that we would go through Limon, Colorado.


Why Limon? For most this town is just gas stop on their way to or from Denver. It isn’t the most exciting of towns, but I have sat in awe of my experience there for many years. Honestly, at least once a month, I will get on Google Earth and look at the town and just sit back in deep reflective thought. There aren’t many times in life that a person knows of the spot that was a true bridge between one segment of their life and the next. Limon, for me, is that spot.


It was back in October in 2003 and I had just spent the month in Las Vegas as an instructor at the Derek Daly Academy. It was an amazing month for me as I was living in my Kansas of auto racing and was being paid for it. Could I have asked for anything more as I truly was living my dream?


However, as with all dreams, there was a point in time where the dream was over and I awoke. Limon, Colorado was the last thing in my dream as on my return trip I spent the night in the town, and actually stayed at that Econo Lodge across the street. I can remember every moment of being in Limon back in 2003. Each minute ticked by as if I were hearing an alarm clock but I wanted to remain in my dream.


Once I returned home from my month long trip in Vegas my life slowly unraveled and just one month and one week later I got my assessment for Asperger Syndrome and I forgot who I was and everything seemed to implode.


I was very interested to see how I would handle going back to Limon as this was like visiting my former self. I have a videographic memory and as we pulled off the interstate it was just like I remembered it. It felt like 2003 all over again and right away we headed towards the restaurant that is across the street from the Econo Lodge. It has a different name now, but it was just like I saw it back in 2003. It was rather eerie as it was like going back into a dream that you had many years ago but can remember it like it happened just five minutes ago.


After dinner we filled up with gas and headed out. I was lost in thought as I was thinking back to who I was in 2003. I mean, how often is it that a person can visit the spot that an era came to an end and set up the events to get a person to where they are today? When I look at Limon on Google Earth I now often think, “What if?” Yes, what if I had continued down the racing path. What would I have become had I never got the diagnosis and actually made it in the sport of racing?


Limon represents a crossroads for me. If racing would have worked out I would not have passed through there yesterday. I would not, probably, have any emotions whatsoever about the town. I also, almost certainly, would not have this blog and not have my book. And, above all us, I would not be on this nationwide tour raising awareness and understanding about the autism spectrum. So yes, in a way, visiting Limon yesterday was like visiting a dream that I had had. But dreams oftentimes, well, as I said we wake up from dreams. Thinking about what I am doing now I can honestly say that the present is far greater than anything I could have ever imagined. Had I been racing, and it was my dream, I would be living for me. Now though, through that shattered dream, I have done more and seen more than I could ever have hoped for. To be told that I am, “changing lives” is something that wouldn’t have happened if I had made it racing. Yes, visiting Limon was like visiting my former self and it was surreal, but I think I needed this. A big chunk of my presentation is talking about who I was and remembering who we were is sometimes difficult. Yesterday though there was no mistaking where I was in 2003. I thought I had it made, but little did I know that getting so close, while difficult at the time, was setting me up for bigger and better things.






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Tuesday, April 17, 2012

New Places, Same Stories

Last night was an amazing night with, perhaps, my best presentation to date on this tour. I didn't know what to expect on this tour and by that I didn't know what type of reaction or stories I would hear from people. I know the landscape in Missouri, but I didn't know what it is like outside of my home state. However, so far, I have learned firsthand that the challenges are the same.

Now, this isn't to say that I was oblivious to the fact the need is everywhere, but it wasn't personal. When parents or teachers come up and express the need that is out there and the absolute need for understanding it bridges the gap between realizing there is a need and experiencing the need first hand.

Those were my thoughts last night and today I am off to Denver. I have a presentation tomorrow night and I am very excited about it. If the showing in Topeka is any hint my trip out West could be amazing! 

Monday, April 16, 2012

Understanding for Full Potential

Yesterday I did a difficult thing as I once again hit the road, after two days at home, as my 2012 Autism Awareness and Understanding Tour continues on. Leaving home was difficult as I was gone for two weeks and on the drive to Topeka and sleeping in my own bed felt awesome. However, on the drive I reflected back to the week prior, and specifically Saturday, and I was quick to be glad to be on the road.

Yes, I had an amazing time on Saturday. My body was tired to a point that I haven't felt in years but regardless of how I felt I had two engagements that day. The day started at a Asperger teen support group and this was awkward for me. I've talked about doing these in the past and still I don't know how to interact in this environment. Perhaps it is that I feel more pressure because I want to say the perfect words and I want to say, "there is always hope" but I'm always worried that I am going to say the wrong thing.

I was introduced to the group and I started explaining who I was and why I wrote. Very quickly the group started using my terms and "Kansas" became the most used word. It sent shivers through my body when I kept hearing, "My Kansas is..." and each time it was said with a sense of honor.

Over the course of the next hour I was simply amazed at how much each person knew about their "Kansas." These were high school students and their level of knowledge was beyond anything I had ever learned and the level of passion they spoke about it was with such a strong conviction. If you've seen my presentation the past year I have said, "Now, I don't usually experience other people's Kansas because I usually speak to parents and teachers.." however, through this I have a better understanding of just how important Kansas is.

The group and I continued conversing and I heard stories of frustrating experiences they had experienced in school and I too shared my troubles I had and I thought that, in that room, there was so much potential. It was actually somewhat scary to think of all the potential in the room. I thought that this potential will only be reached if society understands us.

Later that afternoon I had a book signing event at a Left Banks Books. Before the signing I had to, "speak about my book for 30 minutes." Usually, authors do a reading out of their book but this is impossible for me because I have not, and will not read anything I write. So, I decided to tackle this task by doing a small presentation. However, I had to do this by putting myself back into the days that I was writing it.

When I started writing I didn't believe there ever would be understanding. I lived in a scary world, a world without hope. I didn't believe in change, didn't believe in hope, and didn't believe in a bright future. I was asked this at this speaking event of, "What motivated you to write?" and I responded by saying that all I was writing for was so that, "my dad might just understand me just a little bit because I could not speak how I felt."

As I answered that question I realized understanding is a multi-dimensional thing. Yes, society needs to understand us but another question hit a chord when I was asked, "Who was your book written for? Teachers? Parents? Or how about those on the spectrum?" I took several seconds, which is unusual for me, to contemplate the answer. It took a bit longer because it was all coming together in my mind. I answered the question, quite excitedly, by saying, "I started out writing simply for the sake of writing and so that my dad would understand, but now I don't know if there is a group that wouldn't get something from my book. Parents must know about us, teachers must know about us, and those on the spectrum need the vocabulary to describe what they are feeling." I answered this with a huge smile because just a few hours earlier the things that the group I met with earlier in the day had called, or were called for them, "obsessions" was now simply "Kansas."



As I close this post out I still am thinking back to who I was when I was writing. I never thought I could achieve anything at all. Through my writing, however, an odd thing happened. My family, and myself, began to understand me. Even I didn't realize the potential I had, but here I am. Once again my passion was renewed as being with that support group was one of the coolest things I've done, and I hope I can continue to do my part in spreading awareness and understanding so all of us on the spectrum have more support to realize our true potential.

Friday, April 13, 2012

A Weird Feeling

Last night was weird... I slept in my own bed! The 2012 Autism Awareness and Understanding Tour isn't quite halfway but the way the path across the country worked out made it where I would have a few days at home. It hasn't even been two weeks but the sensation was that as if I was somewhere foreign.

Just because I am home doesn't mean the tour has taken a break. This morning I was on the Big 550 KTRS with McGraw Milhaven and then I had a taped interview on KMOX. Tomorrow I have a closed presentation followed up with a book signing event at Left Bank Books so if you are in the Saint Louis area be sure to stop by and say hi.

After KMOX I made a stop at TouchPoint and that too felt odd. Well, it was also sad because we are in the process of moving locations and it was rough to see the process of where all that I am began. It was almost three years ago that I went through the parent training program there and it has been just over two years ago that I started working there. That building has been so important in my life and when my tour is over it will be all but vacant. With my associative memory system this is going to be a tough thing to go through, but I just need to tell myself that it is the people and programs of TouchPoint that make TouchPoint, well, TouchPoint and the new location will offer the same feelings for me eventually.

So that has been my day. For the rest of the day I'm just going to take it easy and enjoy this time to relax as tomorrow there are those two events and then sometime on Sunday the tour continues with a drive to Topeka.

Oh, and if it isn't too much to ask, please vote for my blog on Babble's Top 30 Autism blogs. Currently I am in 30th spot so if you could help me out there would be amazing. Thanks!

Thursday, April 12, 2012

The Interview of a Lifetime

Yesterday I was on WGN to discuss my book, "Finding Kansas." Now typically I would write about how it went with words, but today I just want to share the video because I think it speaks for itself. You can view the interview BY CLICKING HERE.

Wednesday, April 11, 2012

The Tour Continues

It seems like so long ago as right now I am in Chicago, but it was just yesterday that I was on WWKI in Kokomo for an entire hour! It has been such a thrill and honor to be doing these media spots and the response has been very positive.

Last night I had a presentation in Indianapolis and, for those that were there, the presentation was great and the questions were sharp and when it was over 2 hours 15 minutes later I don't think the crowd wanted to go.

Today is a big day once again as I have an interview on WGN here in Chicago followed up by a half hour radio interview followed up by another presentation. I'm excited for today and I hope I can once again make an impact because that's what this tour is all about.

One note about my tour. The presentation scheduled for Friday in Saint Louis has been postponed and will probably be at the end of the tour now. Also, the start times may be changing later on in the tour. Once all these are confirmed I will update the times.

I'd write more but as hectic and non-stop as it's been I think I've deserved the right to have a short blog post for a day.

Tuesday, April 10, 2012

On The Air

A new "Alias" began yesterday (don't know what that means? See my glossary for the definition) as I was in Fort Wayne to give my presentation. However, the presentation was the easy part of the day; the hard part began in the morning.

Years ago before I was alive my dad was a television reporter for WPTA. I had heard many a tale of his experiences there and as fate would have it I would now be at that same station for the Noon Extra segment which is a half hour segment that includes call in questions. Was I nervous? Ha!

To say I was nervous would be the understatement of the decade, well, at least the week, but in any way you'd like to phrase it I was all but showed up on the Ricther scale because I was shaking up a storm.

I got to the station an hour before the noon newscast started and Rob and I took a seat as the newsroom was busy building the noon newscast. Phone calls were being made, stories were being compiled, and facts were being checked. This was something I never actually thought of as when one watches the news it runs and that's that, but the amount of hectic work to build it was a sight to behold.

As the big red clock ticked towards noon I began to have spurts where I was holding my breath. Sure, I have given 250 or so presentations and sure, I had given four television interviews, but all those interviews were taped; this was live television for half an hour in a studio.

I might have been nervous, but the time between 12 and 12:30 flew by. I remember staring at the walls, and then marveling at how amazing the green screen works for weather forecasts and then, before I knew it, I heard, "Aaron, you can come up now." This was it and it was sink or swim time. This was either going to go really well or end in a disaster that would surely end up on YouTube.

Wires and microphones were adjusted, an ear piece went in, and there I was, at the news desk, ready to say hello to the world, ot at least to Fort Wayne for what would be my live television debut. The following 30 minutes were the fastest 30 minutes of my life. Truly I don't remember what I said or what I was asked. I know that probably sounds horrible after such a build up to this story, but it's true. Wait, I do remember one thing I found unique and that was the way I looked at the camera, or lack of looking at the camera.

I was made aware that there were two cameras that would be used and that I should try and look at them while the timing was right. However, it felt just like making eye contact with a person. It felt strange and unnatural for me so often times I was looking at the anchor, or between cameras, but the "positional warfare" was certainly in effect. I tried to simply overcome it, but it was too strong. I think over time that will become easier, as this was the first time my television "alias" was experienced, but just with doing presentations practice will certainl make things better.

Once the half hour was over I wanted a picture to remember the day by and here is that picture.


As busy as yesterday was the following few days might be the busiest of my life. I'm off to Kokomo this morning to be on WWKI from 9:30 until 10ish or so then I come back to Indy and have a presentation tonight and from there it's a midnight drive to Chicago where I will get a few hours sleep and then have another television in studio interview, a radio interview, and then a presentation followed up by a drive to Peoria... yeah, I'm going to be tired at some point in time but right now it's all about spreading as much awareness and understanding as possible.

Oh, and if you're interested, here's a two-minute interview I gave to WCBS out of New York City.

Monday, April 9, 2012

A Thrilling Find and a Scary Day Ahead

I spent the weekend at my sister's house and on Saturday I decided to go to the book store to see if they had the crossword puzzle magazine I like as well as to stroll through the books on autism. Sadly, they didn't have the brand of crosswords I like, but I was in line for a shock when I got to the psychology section.

My motivation for touring the section was to see just how many autism books Barnes and Noble carries on their shelves. I was having a difficult time finding one when I discovered a very familiar spine of a book... it was mine! I all but jumped for joy because there it was. I always thought my books would just be sold through Amazon and be a small, niche type book that few will ever see (I am a very humble thinker when it comes to myself) but there it was, on the shelf for anyone to pick up, to hold, and to hopefully buy.

After I got back to my sister's house I searched Barnes and Noble's website for my book and checked random zip codes around the country and my book is in stock at most stores. This was a moment of pure awe and I had a slight trembling through my limbs as it occurred that my book is out there and, hopefully, will be read by those who need it.

That was on Saturday, as for today I have to admit I am very nervous as I give my first "live" television interview on WPTA in Fort Wayne, Indiana. I am scheduled to be on at 12:30 and have no idea what to expect. This is something new for me and is something I thought might come up, but here it is and it's going to happen today. An odd thing about this station though; my dad used to be a reporter for them in the early 80's I believe. It's weird how life can work out as I've heard stories from my dad about his television days but never did I think it would be me in front of the camera.

So yes, today starts the marathon of sorts as I have five presentations in five different cities with several radio interviews and a couple television interviews (the other tv will be WGN in Chicago... yeah, I'm nervous about that one too.) This is such a busy week that my presentation coming up on Friday seems likes a year away.

In a way I feel overwhelmed. I mean, will I screw up at this interview? Will people show up for my presentation tonight? What about tomorrow? These are the questions that swirl around in my mind at a speed that can't be comprehended. I think it is normal to feel this way, spectrum or not, but I truly want to reach as many people possible. There is such a need and all it takes is the art of understanding and I hope that today, and the rest of the week for that matter, I am able to do my part and I pray that my message is heard.

Friday, April 6, 2012

My Hope: Autism Awareness, Understanding, and Acceptance

Hope... It's a word that's used a lot. Last week I heard it used a lot in the sense of, "I hope I win that major lottery jackpot." Granted, I would want that (I didn't play) but I have a much stronger hope. It's a hope that burns within me to the point that it hurts.

My hope began as a child when no one really understood me. My classmates, for the most part, let me be, but they never made any effort to interact with me. To prove just how isolated I was, I ran for student council in 5th grade against three others and received zero votes (I thought it unethical to vote for one's self.) From that day on, I always secretly hoped that those around me would understand me even though I had no idea why I, or them, was different.

Eventually I got my diagnosis and still the misunderstandings continued. This was in 2003 and understanding wasn't the norm. Awareness was not anywhere to the point we have it today and there was a lot of misinformation.

My hope as a child turned into hopelessness. I was sure no one would ever understand me and this belief led me down a park path of depression. At that point in time I was sure I would never have a voice and the world would pass me by without ever knowing I existed.

Night after night passed like this and I would always have a conversation with my dad, sometimes heated I might add, that there was no hope. How could there be hope? No one understood me! I can't begin to describe the frustration I felt back then as I knew how I felt but didn't understand why and I couldn't explain it. That is, until I discovered writing.

My new hope was born on those nights. I never thought anyone would read it, and I never thought I would be a speaker, but both people have read my writing (like you today and for that I thank you!) and those that have attended my presentations. Despite all of this I still have this burning passion within me to do more. I always feel as if I need to do more. Right now I'm on a cross-country Autism awareness and understanding tour, but as I begin a 30 day marathon I feel as I should be doing more.

With all this being said, let me tell you my hope right now. I live with the memories of those sleepless and hopeless nights; it's still a part of me. It is memory of those nights that keep my passion alive. So, I think it is fitting that my hope now is the same as back then. All I want, the only thing I want, is to do my part to increase three things. The first is awareness, which this week autism dominated the news headlines with "1 in 88!" Secondly is understanding. This is the part that I feel I can do the most good in. If those around us understand us then, perhaps, the world will react better to us. Most of my major social disasters are quite simply a misunderstanding. I see myself as being "logical in an emotional world", and most times a simple bit of understanding can go a long way in making the disaster not so disastrous. And lastly, and this is something I just felt today, the need of acceptance. As I thought back to my school days the only thing I wanted was to feel accepted for who I am. Even as an adult, some of my quirks are always questioned but this is the way I am.

So my hope is this; Without awareness we won't have understanding and without understanding there will never be acceptance. As I said, my passion was born on those nights of feeling alone and forgotten. Now, even though I am doing all this fantastic stuff, I still feel this burning desire to do more. In the end though the pure hope I have is that we start down the road of acceptance. Is that too much to ask? Is that too much to hope for? Well, if people can hope to win countless millions I will hope that we can live in a world where Autism awareness, understanding, and acceptance are no longer something we hope for, but is the world we live in.



Here's the schedule of where I will be. There are other dates and locations that will added. 




Date & Time
City
Location


April 9 at 7 p.m.
Ft. Wayne, IN
Concordia Seminary
6600 N. Clinton
Ft. Wayne, IN 46805-1433
April 10 at 7 p.m.
Indianapolis, IN
Lutheran High School of Indianapolis
5555 S. Arlington Ave.
Indianapolis, IN 46237
April 11 at 7 p.m.
Chicago, IL
Walther Lutheran Academy & High School
900 Chicago Ave.
Melrose Park, IL 60130
April 12 4:40 p.m.
Peoria, IL
Easter Seals-Central IL
507 E. Armstrong Ave.
Peoria, IL 61603
April 13 at 7 p.m.
St. Louis, MO
Lutheran High South
9515 Tesson Ferry Rd.
St. Louis, MO 63123
April 16 at 7 p.m.
Topeka, KS
Topeka Lutheran
701 SW Roosevelt St.
Topeka, KS 66606
April 18 at 7 p.m.
Denver, CO
Lutheran HS - Parker
11249 Newlin Gulch Blvd.
Parker, CO 80134
April 23 at 7 p.m.
Phoenix, AZ
Christ Lutheran
3901 E. Indian School Rd.
Phoenix, AZ 85018
April 25 at 7 p.m.
Las Vegas, NV
Faith Jr & Sr High School
2015 S. Hualapai Way
Las Vegas, NV 89117
April 28 at 7 p.m.
San Francisco, CA
West Portal Lutheran School
200 Sloat Blvd.
San Francisco, CA 94132
May 1 at 7 p.m.
Los Angeles, CA
Orange Lutheran High
2222 North Santiago Blvd.
Orange, CA 92867
May 3 at 7 p.m.
Irvine, CA
Crean Lutheran HS
12500 Sand Canyon Ave.
Irvine, CA 92618-1100

Driving Through the Night

Okay, I had a hectic day and was unable to get a blog up so I decided to do a "video" blog from the interstate. This is more of an audio blog and I'm not sure if the video will have a similar effect as The Blair Witch Project or Cloverfield because, honestly, holding a camera still in a moving vehicle ISN'T EASY!

Anyway, I discovered right after I hit the end button that I went past the spot of last year's major blog post, "A Sit in the Grass" which was the story of that day's flat tire. In any event is today's, or rather yesterday's video blog:

Wednesday, April 4, 2012

At Autism Speaks with Dr. Alycia Halladay

I had the opportunity to present a copy of Finding Kansas to Dr. Alycia Halladay, Director of Environmental Research at Autism Speaks on Thursday afternoon. Why is she so important in my life? When I began to write, my dad call Autism Speaks and told someone on the phone that his son was writing stuff, but he didn't know if it was valid. He got transferred to Dr. Halladay and she started reading what I wrote. She wrote a thing for my book and it's on page 3. Here's the video of that presentation to Dr. Halladay.



Here's the schedule of where I will be. There are other dates and locations that will added. 




Date & Time
City
Location


April 9 at 7 p.m.
Ft. Wayne, IN
Concordia Seminary
6600 N. Clinton
Ft. Wayne, IN 46805-1433
April 10 at 7 p.m.
Indianapolis, IN
Lutheran High School of Indianapolis
5555 S. Arlington Ave.
Indianapolis, IN 46237
April 11 at 7 p.m.
Chicago, IL
Walther Lutheran Academy & High School
900 Chicago Ave.
Melrose Park, IL 60130
April 12 4:40 p.m.
Peoria, IL
Easter Seals-Central IL
507 E. Armstrong Ave.
Peoria, IL 61603
April 13 at 7 p.m.
St. Louis, MO
Lutheran High South
9515 Tesson Ferry Rd.
St. Louis, MO 63123
April 16 at 7 p.m.
Topeka, KS
Topeka Lutheran
701 SW Roosevelt St.
Topeka, KS 66606
April 18 at 7 p.m.
Denver, CO
Lutheran HS - Parker
11249 Newlin Gulch Blvd.
Parker, CO 80134
April 23 at 7 p.m.
Phoenix, AZ
Christ Lutheran
3901 E. Indian School Rd.
Phoenix, AZ 85018
April 25 at 7 p.m.
Las Vegas, NV
Faith Jr & Sr High School
2015 S. Hualapai Way
Las Vegas, NV 89117
April 28 at 7 p.m.
San Francisco, CA
West Portal Lutheran School
200 Sloat Blvd.
San Francisco, CA 94132
May 1 at 7 p.m.
Los Angeles, CA
Orange Lutheran High
2222 North Santiago Blvd.
Orange, CA 92867
May 3 at 7 p.m.
Irvine, CA
Crean Lutheran HS
12500 Sand Canyon Ave.
Irvine, CA 92618-1100

Tuesday, April 3, 2012

Launch Day: My Story of One

Six months ago I shared the story of what it was like to come to Manhattan and meet my publisher. At the time it didn't seem real. To be honest, even last week it didn't seem real despite being able to hold copies of my book in my hand.

It started to sink in at an odd time; the drive two days ago was long and as midnight came and went and we were driving through the hilly terrain of Pennsylvania I finally realized that it was coming true and I was just a few days from being a "published" author. I may have finally realized it but then I asked, "Will anyone read it?"

As I wrote last week in a three part series (that link is to part one) I am a very unlikely author. I never intended on writing a book nor did I ever intend on being a speaker. What spawned my writing was my simple desire to tell my family who I was and why I was because speaking it was impossible. When I began, I didn't know if it had merit, but several professionals said it did so I continued.

That was then, this is now and today my book is launched! Yesterday though this prospect troubled me because what if only a handful of people buy it. What if only a handful of people show up at my speaking venues on my national autism awareness and understanding tour? These fears shook me to the point that Rob, my friend from Vancouver who is sort of acting like a personal assistant this month, said, "Aaron, is your mind frozen? You look lost!" I was.

I wanted to cry. Yes, I wanted to cry because I was afraid that my book may only be read by a few people. I also have this fear that within Missouri, when I speak at every presentation I do, I am sure no one is going to show up despite over 200 presentations that tell me otherwise.

In mid-afternoon, Rob and I took the "Top of the Rock" tour at Rockerfeller Plaza, AKA 30 Rock, and it was up there that a calmness began to set in. The view from the top was one I will never forget and was one of complete serenity. It was here that I thought back to all those nights and to all the times I questioned what it meant to have Asperger Syndrome. Back then there wasn't awareness like we have now (by the way, seeing the Empire State Building lit up blue was awesome!) and I had nothing but the garbage on the internet to believe about my future.

Being 70 floors up and being relaxed for the first time in a long time I realized that I am just one story. Yes, I wrote a book, and yes I hope everyone reads it, but I'm just one voice, one piece to the puzzle that is the autism spectrum. I'm sure there are other people out there who are just as confused as I was about their diagnosis and I'm sure there are family members and educators who are confused about what all this autism spectrum talk is. As I write this, there is a story on the news about the new numbers and each time I heard the "1 in 88..." I kept focusing on the "1" part; this is what I was thinking about atop 30 Rock.

When we finally headed down I was at peace with what may come. Will it sell 5, will it sell 100,000 over its lifetime? In the grand scheme of things, the things that get lost in those numbers gets lost. If I am concerned with the numbers I will lose track of the "one". For many years I was a one that was depressed, jobless, hopeless, and aimless. I believe that understanding is the foundation for hope. If those on the spectrum, like myself, can be understood by family members, the community, and the world the room for growth is expanded greatly. So yes, I may be an author and I was being blinded by the potential numbers, but I can't let this happen because for each one that is bought that is one life that could be changed. Granted, and obviously, the more the better but in the end if just one person is touched, if just one person has an "ah-ha" moment from my book or from one of my presentations, then this month will all be worth it.

Could I have had a blog in a celebratory fashion today proclaiming to the world that my book was out? Yes, and in fact I was trying to think of the best way of going about it in a video blog, but as I considered the person that I was, I concluded that that would have been a disservice to my journey.  It was a long, hard road to get to where I am and I am beyond thankful that I had one of the best days of my life in Manhattan yesterday, but that's now and the events in my book, "Finding Kansas" are the days when I simply wanted one person to know who I was. Now anyone will be able read the words I used to describe myself and the metaphors I used to help my dad better understand my quirks and also this book paves the way to the person that I am today. However, I may be proud but I can't go over the top, not on something like this. No "Yay!" no "Look at me! I'm king of the world." Nope, the only thing I can say is thank you to each and every person along the way that helped me, that never gave up on me, and gave me a chance to succeed. To all of you I say thank you for giving this "one" a chance.

Monday, April 2, 2012

Tired

Welcome to world autism awareness day! As for me, well, I'm tired! Yesterday was a 20+ hour day as we started in Saint Louis and made it to the New York City area at around 3:30 in the morning. The final couple hours were difficult, but we did make it.

Today we'll venture into Manhattan and if I come up with a great video blog I will make sure to put one up.