STL Autism Conference June 23

100 500's

Tomorrow is a momentous occasion for sports in America as America’s race, The Indianapolis 500, The Greatest Spectacle in Racing, will run its 100^th edition. One hundred times fans have flocked from around the world to see cars racing at the fastest speeds of the era, one hundred times fans of all ages have made the pilgrimage to the intersection of 16^th and Georgetown, and it’ll be the one hundredth time one driver will obtain racing immortality while the rest of the field, regardless of a 2^nd or 33^rd place finish, will say, “maybe next year.”

Indy, however, is more than just a race for many and for myself this event will mark my 20^th straight. Each year the event means more to me, and I know I say that every year, but as Sunday dawns and the traditional drive to the track begins along with what could be a record in the range of 350,000-400,000 other spectators, and the traditional walk to the track commence, and the prerace ceremonies begin I will find myself fighting back emotions. This year is extra special because I got to play a very small role for five hours on the fourth day of practice helping out with the flags, but that is the essence of Indy.

For one person on Sunday it will be their 90^th Indy 500! For others it will be their first and for anyone that goes through the gates on race day for the first time, regardless of age, it’s obvious that this isn’t just another event, but rather a stage that one can dream. For the young fans that are getting their first taste of the Indy 500, and the traditions that go along with it, they may dream about being a driver someday in the race, and maybe even being one of the chosen few that comes off of turn four on the final lap seeing the twin checkereds in the air knowing that immortality is about to be achieved and all the sacrifice and hard work is about to pay off and the celebration will include the sweetest swig of milk one could ever experience.

For another fan Sunday will be a remembrance of races past, and of family members that are no longer here. Indy is based on traditions and many families have many different traditions. For those experiencing it the first time someone, most likely, is bringing them to it and I know I will never forget my first Indy experiences in 1987 as I waved a tiny little checkered flag as the cars zipped past imagining that I had the power to communicate with the drivers with my little souvenir flag. It was my dad that introduced me to the hallowed grounds of IMS and in 1989 I saw my first 500. Slowly, and the tradition of the annual pilgrimage began in 1997, the rituals were set and each year we attend. I’m lucky as I still have my dad to attend with me, but for others their first trip through the turnstiles may have been in the 40’s, or 50’s, and the one that introduced them to the heritage and spectacle that is the Indianapolis 500 is no longer with them, but come Sunday, in a way, they will most certainly be with them in spirit.

You see, and for those that don’t know this phrase often seems trite and a stretch, but the Indy 500 is more than a race. Is the race the main draw? Yes. Is it the reason why people attend? Yes, but it’s the history that comes with it and the history that those in the stand associate with the event that makes it transcend the “just another sporting event” tag.

Sunday will see the 100^th running and when the first 500 was ran in 1911 I doubt the organizers could envision what it has become today as fans from around the world will descend upon the grounds each with his or her little traditions. Friends that see each other just once a year may meat up at the pagoda, or a family may have a spot they go to before the race to remember the one that introduced them to the race, and for others, well, for others by the end of the day they may have partied so hard they may not actually remember the day, but whomever they are I’d say a majority are there for reasons that transcend the race itself. Again, this is to take nothing away from the race as the winner on Sunday will put their name down in the history books on what is shaping up to be a stacked field, but it’s because of the race that the traditions have been set. It’s because of the race that those friends will meet up, or a son or daughter will shed a tear during the playing Taps, or Back Home Again in Indiana, and it’s because of the race that chills will be sent down the spines of all those in attendance as the electricity in the air comes to a crescendo on the saying of, “Lady, and gentleman, start your engines!” It’s because of this race dreams can be had, dreams can be realized, and I’ll experience my 20^th straight story, but I’m just one amongst hundreds of thousands. You can watch the race on television but until you experience the traditions, the tears, the pageantry, and the site of 33 cars starting three wide and coming by in excess of 220 miles per hour the true spectacle can’t be experienced. Indy is more, and in 20 more years my story will be much different than it is now, but with each race the passage of time is marked and it brings to view to cherish each lap, each moment, because there’s no telling when the race can’t be celebrated with the person that introduced you to, what I consider to be, the greatest place on Earth. Yes, Indy is more and perhaps not everyone will share in my perspective of the event the way I do, but if you do I can guarantee you’ve got a tear in your eye just like I do right now writing this and this, exactly, is why Indy has a soul and why a record crowd will gather tomorrow to witness the tradition, the emotion, and then get lost in the thrill of watching the world’s greatest motor race.

Here’s to another 100 runnings of the Indy 500 and to all the stories that have been told, will be experienced for the first time, and to those that will experience their first 500 on the 101^st running!

The Trouble With Understanding Asperger's

My motto for the past six years has been “understanding is the foundation for hope.” Is this true? Absolutely, but as I’ve thought about last week’s post on the contradictory nature of Asperger’s and I thought yesterday’s post of Let it… NO! I’ve been beginning to realize the real value in concepts to describe the mechanics of Asperger’s.

If one were to look at the pure medical side and the explanation one would not be given the true form of understanding that will lead to, well, understanding. It’s one thing to say that, “people with Asperger’s have difficulty in social interactions.” If left alone to that statement the true challenges that a person with Asperger’s may live with aren’t stated. It’s in the left out contradictions that need to be stated because a person on the spectrum may have challenges but want to socialize yet knowing that they will be uncomfortable in doing so. Was that a confusing sentence? Try living with it! And that right there is the focal point on the need for understanding.

As I continue looking at the medical website it said that those on the autism spectrum may have excellent auditory abilities. Okay, yes, this may be true in some but there’s no ability to understand what this means without further stating that, for some, there is no ability to turn it off. Also, while the ability to hear an airplane many seconds before anyone else hears it in the air may exist also too is the potential processing delay in hearing words when spoken to. Can you see the potential disconnect here on why a person not affiliated with the autism spectrum would be confused? On one hand here’s a person that has an amazing sense of hearing yet at the same time it may seem as if they aren’t able to understand the words when spoken to because of processing delay. Of course, if processing delay isn’t understood the ability to adapt, empathize, and allow the individual time to process won’t be there.

Understanding, as important as it is, is very difficult in being in a two way street. Just how I try and describe the mechanics on why I do and why I feel the things I do I have zero ability to understand where others come from. Before I started writing I couldn’t express things because I thought everyone thought exactly the same way I did and it was inconceivable that others would have different thought processes or different ways in doing things. This, right here, furthers the need for my words, and the words of other speakers and writers in this field, to get out there to as many people as possible.

I feel we are on the right track, but it isn’t going to be as easy as I first made it out to be. When I started out on this wonderful journey as an Autism Ambassador for Easter Seals Midwest six years ago I thought understanding would just come naturally, but just how I can’t fathom how others aren’t the same as myself those not on the spectrum will have the same difficulty in attempting to understand a person on the autism spectrum. For someone that understand idioms and slang it is probably incomprehensible that a person could misconstrue the phrase, “it’s time to hit the road” but for the person on the autism spectrum they may be sorely confused as to why one would want to break their hand hitting the road. Same goes for sensory issues, and this is probably the most difficult to understand because, to a person that doesn’t have it, how could they possible conceive that sound, even low level sounds, could create pain? Discomfort, maybe, but pain? “Come on, get serious!” is a response many parents have probably heard when trying to describe it, but it’s there and it’s a challenge and so too is the path to understanding.

We can do this. I was a bit of a dreamer when I began and I may have even become lackadaisical in my writings because to me understanding is easy, but of course this is because I live it. When explaining things now I need to word it and come up with concepts that put in a visible image in a person’s brain to understand it. Concepts are how I began and I need to go back to creating these because understanding is the foundation for hope and we can have awareness all day and all night long. In fact, we do, with things like medical websites, but with just saying that there may be trouble with social interactions, or one might have a heightened sense of awareness, or one may perseverate on a topic and possibly excel, well, with all that we may either sound like a description of a leading character on a television show, a super hero, or just an average everyday person when lost in this all is the true struggles, the true inner battles of wanting something and yet knowing that we’d be uncomfortable, and through this all the art of understanding won’t be painted.

Let It... NO!

Let it… No? Those aren’t the words to a familiar song, but as the familiar song goes the purpose is to let it go but that’s a concept foreign to me and I was having an issue a couple nights ago and my dad told me to just, “let it go” but it was then I realized that, quite simply, I couldn’t.

This is a story I hear frequently; an event that stays days, weeks, or even years after the fact and for me the stories I hear are just a reminder of my inability to let things go. A good example, and this didn’t happen to me, was there was a student that hit a student with Asperger’s in school and the student with Asperger’s complained to the teacher. This was investigated at the story was true, but the timeline of the incident was that the event occurred years previous to when the student said it. The student informed each teacher throughout the years and yes, it was fact but the ability to let it go and move on was not.

Why is this? Why is there this inability to move on form something? First, the concept of time is different for myself and others on the spectrum, in that everything is now. Events of grade school are just as fresh in my mind now as they were then. Secondly is anxiety. In the previous paragraph the student that talked about being hit, to him, was always at risk because if it happened once it will certainly happen again because it feels as if it just did.

In my life this has been one of the most constant echoing themes which has brought me down the most and it doesn’t take much. In a conversation one single word can get me caught up on it and the ability to move past it isn’t there. It festers and then it grows in size and eventually it becomes so big it begins feeding off its own size and what to most would be an irrelevant event has become this gigantic monstrosity that has essentially paralyzed my ability to focus.

Going back last week to my post regarding the contradictions of Asperger’s is important because I know I should just be able to move on, but I can’t. My body tells me otherwise and maybe this is all rooted in fear. Of course, dwelling on something in the past doesn’t help a thing and I know this and yet when I get hung up on something be it something I did, or something someone else said, I can’t simply let it go. It stays, lingers, and much like the hideous aroma of rotten milk it dampens spirits.

This is something that you’ll either understand or you won’t. If you live with it you’re thinking, “Yes, someone gets it!” and if you haven’t lived with this then you’re probably perplexed and this is understandable because I can’t see living with the ability to let things go. I talk about the fact that “understanding is the foundation for hope” but the art of understanding is becoming more complex and I hope to, in tomorrow’s post, expand upon why I feel the dimensions of understanding are more complex than I used to realize.

What The Best Day Was Really Like

So last Friday I wrote a humble blog on the road it took to get to Indy and all the factors and people that helped along the way. The thing is, though, that I got many messages saying, “Aaron, come on, tell us what it was really like as the story is such an inspiration.” So here goes, what the day really was like and what it meant.

I did a national speaking tour in 2012 and on the way to New York City my friend and codriver on the journey, Rob, stopped at the Indianapolis Motor Speedway and did the grounds tour. On that tour the tour bus will stop at the famous yard of bricks and everyone gets out and it’s a high quality photo op. On this trip I didn’t look down at the yard of bricks but rather up at the stand and I told Rob, “Someday. Rob, someday I’m going to be in that stand!” Everyone has dream, and that dream was lofty, but when a dream comes true, well, that’s exactly what happened on Thursday.

The previous two days I had been working the Purdue/USAC EVGP at the Indianapolis Motor Speedway, and as mentioned in Friday’s blog, I was asked if I had ever been in the stand while the track was hot. The answer was no and I was told there may be a chance the following day and I should await a text message. The message never came and going to sleep last Wednesday was not easy because I had been told I may be allowed to stand in what I consider to be the most sacred of flagging offices in all the world.

I awoke early and checked my phone… Nothing. “He’s extremely busy” I told myself and I waited, but still no message came. Practice started at noon at it was now 11 so I decided to go to Noble Roman’s on 10^th St which is near the track to position myself to either make the long drive back to Saint Louis or make the short and glorious drive to the corners of 16^th and Georgetown and as much as I love the breadsticks there each passing minute raised and frayed my nerves.

What to do? I didn’t want to pester this track official as that’s the last thing I wanted, but still he said he’d get back to me so for once in my life I went out on a limb and I sent a text indicating I didn’t want to pester but I was just so excited. As busy as he was he got back with me within 30 seconds and I was out the door of that Noble Roman’s and started the most fantastic drive to the track. I was on the road I essentially grew up on and I thought back to 25 years ago growing up and never could I have imagined that the dream I had of being in the flag stand during the month of May was about to come true!

I reported to the credential office and it was all taken care of and I was given a silver badge and then a lady came in and shouted my name and if I was in the room. I was, I said, “hello” and the next 15 minutes was a blur as we walked through some offices, got on a golf cart, and made our way into the infield with the sound of Indycars doing 225mph on the track as the soundtrack to this adventure.

She handed me over to the track official as he finished an interview and then it was another blur as I was introduced to various people, so many that I don’t fully recall, but I got a quick tour of the impressive race control room and then it was time! It was a walk I had envisioned when I first waived a flag at the track in the infield for practice when my dad took me in 1988. It was a walk I envisioned the first time I assisted Frankie in 1995 at the SLKA, and when I picked up SKUSA and USAC it was a walk that, albeit seemed like a mirage and an unobtainable accomplishment, the unobtainable was now being experienced as we walked from the pagoda down the tunnel and towards that most sacred of places; the flagstand of the Indianapolis Motor Speedway.

On the walk the conversation was very much relaxed all things considered. We talked about dreams, autism, and how excited I was. It was also an honor, and I mean that in the truest of words, that this man would take so much time out of his day to make this happen for me.

Out of the tunnel and now we were approaching the stand. He asked me if I wanted to go first and I said, “After you” as I was now soaking it in. This was it! The moment I waited for my entire life and the 21 years of having flags in hand at tracks around the country was now about to equate into an experience few have ever had. First though, I had to negotiate the tricky ladder which if you have a fear of heights you’d hate this ladder and if you don’t have a fear of heights you’ll develop one quickly.

I made my way up and as I did a yellow for a track inspection was called which allowed everyone in the stand to get introduced to me and a couple group photos were taken. Was I nervous in all this? Ha! The photo with the Sunoco checkered was about the trickiest photo I’ve ever taken. I know how to hold a flag for a photo, well, I typically do but I just couldn’t find the corner to display it right. Andrew, the other starter for the day, assisted me and I felt so bad that I couldn’t grip a corner of a flag rightly, but the excitement pulsing through my body made that task rather difficult. Oh, and clipping on the wired radio to my belt… That too was something that had to have those in the stand thinking, “Who is this and why is he here?”

The track was about to back to green and Andrew handed me the green and immediately the nerves went away. When time was right I gave a fierce wave so all in the pits could see even though they have radio communications and as the cars that went on track came around I gave a classy green. I didn’t go all out because that would be out of place for practice, but there was still style to it even though yeah, I wanted to give it my all as if it were the final restart for the Indy 500, but I can contain myself. The style was still good enough to catch the attention of race control which made mention of it after they identified that there was a guest in the stand.

After that I was all business and I barely moved during green flag conditions as I watched each car that went by eyeing for any possible debris. During yellow periods I’d converse and the flag stand observer in the tower, middle in the group photo, actually remembered me from 1996! That also eased the nerves but again, each time the track was under green conditions I stood there in my spot at attention as if I belonged because… I did.

Time flew by. Race control radioed, “three hours remain” and the next thing I know, “one hour remains.” No! What’s happening?! Time flew and I have been asked if I got to “soak it in” which I didn’t because it was so natural being up there. In all the videos that are out there I look as if I’ve been in that stand my whole life which in my imagination I have been, but as 6:00 came and the call for checkered came along with it the three cars on track came off of four and I gave another classy display of the flag and as they passed I froze with the flag and the wind made it look even better as the checkered danced in the wind. Freezing is, if starters have a signature move, is mine but I froze for another reason because that moment in time I wanted to live in forever. It’s been a rough two months for me and I never needed something more than this chance to live out a dream and as several seconds passed I turned towards the other two and started rolling up the checkered. The dream day, the day I waited for my entire life and was sure I’d never get to experience, was now over which is almost as bad as never thinking you’d get to do it in the first place.

The walk back to my car was… It was odd. On one hand I walked with confidence as I had been a very small part of the month of May at Indy. I called my dad to tell him just how awesome it was but then I got a call from the track official that made this all happen. I quickly switched over and he wanted to see me before I left and thankfully I was parked right by his office.

He came out of the office and I was beaming ear to ear with a smile and when he asked me, “How was it?” the answer was obvious and I said, “Thank you for the best day of my life!” There was no exaggeration or embellishment in that and I’ve never been more thankful to another person than I was right then and there. How often does one get to live out a dream? I did and I can try and describe what it is like in having Indycars zoom past at 225+mph, or the way a pack of cars and the air can shake the stand, or what it is like seeing yourself on the gigantic video screens, or what it is like in working so hard for so long and having it pay off, but no matter what as great of a writer as I am I’d never give it justice. Only one person will ever truly know the words or the lack thereof because it was in my smile, a smile decades in the making.

Taking the Stand at Indy and The True Story Behind It

               There I was, checkered flag in hand as 6:00 came and three cars doing in excess of 220mph were headed my direction off of turn four as I stood high atop the famous yard of bricks at the Indianapolis Motor Speedway. The cars approached, I did some fancy stuff with the checkered, and the cars went passed and that was it, the greatest day of my life was over. It’s odd to start a story at the end but for this story to have the merit it deserves we must start at the end because to the outside observer the end product would be the only thing seen because here I was, a starter for practice for the largest race in the world much less the 100^th running of it. This, really, is the stuff dreams are made of and I could easily make this blog about myself in the hard work I’ve done, or the years of dedication, or my style, part that would be a shame on the true meaning of this story because to understand this story we have to look at it going from the end to the beginning.

                The day prior I had been working an event put on by Purdue and USAC in a parking lot in the infield that features electric karts. I noticed a track official whom I had met previously in 2012 when I filmed a video blog in the flagstand the day prior to that year’s Indy 500 and then the next year that event led me to be an honorary starter for a day of practice. He saw me and asked me how I was doing and how my books were going and my presentations. It was a great feeling to be remembered and he then asked, “Have you ever been in the stand while the track was hot?” In 21 years of flagging I’ve never once been atop a stand when Indycars were on the track so I nervously said, “no” in hopes that maybe, just maybe this conversation would head towards where I could only dream. Again though, that day was made possible by the event which encouraged me to do a video blog in the first place because it wasn’t simply a random, “hey, wouldn’t it be cool if I did a video blog from the flagstand at IMS?” Nope, it wasn’t that so we’ll have to continue going backwards to get to the answer.

                Prior to the video blog from 2008 to the present I’ve been the chief starter for SKUSA and that led me to become a starter for USAC which has me traveling all over the country working races. The start with SKUSA was amazing because the owner and CEO saw me at a regional race and turned to the promoter and asked, “What the heck is that?” pointing in my direction as I was doing my normal thing with flags. I then was surprised at the awards ceremony when he called me out and said I was the new starter for the SKUSA Supernats which is the world’s largest karting event and it was from doing that which allowed me to get involved with USAC. Now I mentioned my usual flagging thing which for that we have to go back even further to 1995.

                I was 12 and I started racing gokarts at the Saint Louis Karting Association. The club had a flagman and his age was reaching 80 and his ability to discern colors was fading and when the color of the flags means everything it became a hazard so I volunteered to hand him the right flags when I wasn’t racing. I was amazed he and the club allowed a 12 year old such a responsibility but it happened and with his retirement at the end of my first season I became the club’s chief starter at the age of 13, but why was I so eager to help Frankie, the club flagman? For that we get to the beginning of this story.

                It was 1990 and I lived in Indianapolis just about two miles from the Indianapolis Motor Speedway and I was enthralled with all things motorsports, specifically though the chief starters and especially Duane Sweeney whom was the chief started of the Indy 500. While many childhood heroes of the time had the last name of Unser, Foyt, Andretti, or Mears mine was Sweeney. My dad was a pastor of a church and a member of the church worked at USAC, which at the time was the sanctioning body of the race, and he asked her if she could get me an autographed picture. Duane did one better by giving me a picture AND HIS CHECKERED FLAG he was going to use in 1990. Needless to say, as a seven year old, I was hooked and my love of flags grew and grew and grew some more.

                What’s the relevancy in all this? Why did I start with what could be a crowning moment in my life and stating that, if that were the only part of the story, then the story would be lost? While it may have been myself and myself alone with flags in hand it wasn’t myself alone that got me there and this is the soul of this story. I was diagnosed with Asperger’s at the age of 20 and back in 2003 the information on the internet did not paint a pretty picture for my future. The only thing that kept me going in life were the 11 club races I’d flag a year. I stayed that way for several years but then I got that regional series that Tom, the SKUSA CEO, would see me at and things started turning around.

                My story, along with other success stories of those on the autism spectrum are filled with these events and if you just look at the finished product you are missing the true value of the story. It wasn’t that I simply flagged some in practice today but it’s all the people that helped out along the way. Much like how next week the winner of the 100^th Indy 500 didn’t get to victory lane and didn’t get to drink the sweetest tasting milk in all the world all by himself. It took a team and a lifelong commitment from friends and family. So too, in a way, is the stories of those that are on the autism spectrum and have excelled.

                It takes a team to succeed and as I climbed down from the flag stand it hit me like a sucker punch to the gut on just how rare of an achievement it was to do what I had just done. Few will ever have the view I had and as I shook the hands of all that were with me on that day I envisioned shaking every person’s hand that gave me a chance, or gave me support along the way. Every story I have in my development would not be possible if not for the event that preceded it. Some of these were major events from family members, or those that got me involved with Easter Seals Midwest, and others were seemingly minor. I thought about all the teachers I had that did amazing things, and the few friends I had that were a support, and without them this experience wouldn’t have happened. I then thought about the teachers of today, and parents of today, in that seemingly irrelevant events may have such wonderful ramifications down the road, but most of all I thought about Duane.                

                When I got into my car my emotions finally hit and I’m not afraid to admit I cried. I fought back tears the first time I displayed the green at Indy, but many drivers will admit that they teared up too their first time to Indy as a driver. But yes, I thought about Duane and I made a statement to the observer in the flagstand with me that worked with Duane for many years and I said, “You know, I’d give about anything to be able to tell Duane what that flag he gave me meant because without that flag what you see today and my story simply wouldn’t exist.”

                History will remember the winner of the 100^th and yesterday will simply be a small footnote at the end of this year’s race. Some will remember the driver that was the fastest, most won’t. Some will remember the perfect weather, but for this writer it will be a day that lives forever but I didn’t get there alone. It took a team and for every educator, parent, or simply a member of society it’s amazing what even the smallest of gestures can bring and that’s why yesterday wasn’t about me, but rather every person that fought for me, cried for me, gave me a chance, and spoke for me when I couldn’t that allowed me to stand atop the yard of bricks and experience racing at the grandest stage and have an experience I will never forget. To all that were a part of this story I will never find the words that will give justice to how much it all meant, but most of all I wish I could simply tell Duane the simplest yet most sincere, “thank you.”

The Aspie Traveler 4th Trip Complete

You can read the entire fourth trip on a single page now http://lifeontheothersideofthewall.blogspot.com/p/the-aspie-traveler-madagascar-mau.html

The Places we Visit

                It’s easy for routines and rituals to get set in stone quickly and one of the ones that I’ve developed the past three years or so is stopping at this bagel place near the Indianapolis Motor Speedway. I’m working my second Purdue/USAC EvGP this year and last year, each early morning, I’d stop by for a bagel. It was neat as there were always various other race staff inside preparing for their day on the big track as Indy 500 practice is going on while the Ev race is in a parking lot on the north side of the track. Anyway, I’d sit alone but it was fun to imagine that maybe someday I’d be sitting with these other people; whether they were mechanics or even the doctors I’d see in there. I was always silent and invisible but being in that place was always relaxing and part of my routine. That was, until this morning.

                I haven’t been in Indy for eight months and as I got off I-465 onto Crawfordsville Road and neared the bagel place the sign had been taken down and the section of the building was now hollow and the place I had stopped at each morning for every event I work at IMS was gone. To most this would be a minor inconvenience but to myself, well, it was emotional. Gone was the routine, gone were hearing the old timers talk shop, and gone was the knowledge that the place would remain the same. Change is difficult and when there’s a change like this it does evoke an emotional response.

                Improvising quickly had to be done to decide what to do for breakfast but my day had already been ruined. Sure, I was invisible in that place and I would go there six times a year, but it was a part of the routine as were the people. Isn’t this unique, especially compared to yesterday’s blog? I mean, here I am afraid of interaction and yet a physical place of business can have an emotional response. When I hear misguided experts say, “People with Asperger’s have no emotions” I just shake my head and want to scream, “Ha! If you only knew!” because I had a highly emotional response to a place.

                Why a place? Why would this create such a reaction? First off it’s a reminder of change and it creates fear. Think about your life and the places you’ve been and maybe there’s been a time that you returned to a town wanting to revisit a great diner, or store, only to find that it no longer exists. Now add on top of that fact that the place had an emotional response. I’m sure everyone, autism spectrum or not, has had that place that meant something to them that is no longer there. Now, add the autism spectrum in that it isn’t that we have no emotions it’s just that they aren’t experienced or shared in the traditional sense and that’s when issues arise. Traditional sense? Yes. This means that the place to most might have been a bagel shop but whilst in there I felt a connection to those in there. It was warm, welcoming, and the average age was high but I always had thoughts that when I’m that age I too would be in there talking about races of old and the good ole days and, well, with the closure of the store it’s more than a closure but rather a deletion of those thoughts and images.

                My memory words differently and is spurred on by various things but places is one of them and if a place gets deleted it’s much like deleting the memory. Having this system is overwhelming at times, to be honest, as so many places mean so much but at the same time when something gets deleted it’s difficult to deal with because I then fear the next event that will be experienced like this.

                The day dragged on as the weather didn’t play nice and not a single lap was turned today and once the event was called for the day I drove towards Noble Romans on 10^th St and this drive was one full of angst. Would this place also be closed? I grew up just a mile from that place and their breadsticks are divine, but would it still be there? After experiencing one loss today I was fearing another, but thankfully the lights were on and it was business as normal.

                Once inside I began to think heavily on this topic and how on one hand it is what keeps memories intact and on the other it’s downright overwhelming. Intact? I’ve called this the “associative memory system” and having as good of a memory as I do it makes it where there needs to be aids to assist in keeping it all in line or it’s as if everything, every single memory I have, happened all at once. My memories would be almost indistinguishable from each other if not for this associative system. However, it’s overwhelming because anything and everything can be related to something else and when change occurs it is very much like deleting the files that went along with it. This is why change is bad, even if the change is for the better. It’s hard to adjust, it’s hard to move on, and it’s extremely difficult to be in constant fear of losing a part of one’s self due to things like this.

                I now wonder about those people I’d see in there each time I was in. Did they migrate somewhere else? Do they still have the same conversations? It’s an odd feeling to feel a connection to a place, but I do and I know I am in fear of the next time I go somewhere that means a lot to me only to find that it, and the memories experienced there, no longer exist.

The Contradictory Nature of Asperger's

Racing season is here! However, as excited as I am, today’s blog is going to use the most traditional of all things in motorsport, the checkered flag, as a concept to describe Asperger’s. The thing about the checkered flag is that it’s so contradictory. In the top corner is one color and if you go just far enough you’ll reach another, but then keep going and you’ll be back to where you started and so on and so forth. What does this mean? My experience in having Asperger’s is one of stark contrasts and it gets tiring. Here’s what I mean…

I want to be part of the social world but the social word tires me.
I want to be part of a team but I often can't see the concept of teamwork.
I have extremely good sense, especially when it comes to hearing, but I often wish I could turn it off.
I want to be alone but being alone is extremely isolating.
I need to be perfect in things that I do but there is no satisfaction at achieving perfection.
I can give some incredibly witty remarks but often miss out on when someone is being witty.
I want to make sense of the world but often the more I know about things the scarier the world is.
Being in my Kansas is awesome but I often wonder what life is like out there.
I yearn to be normal but normal seems so boring.
I can do some things great and many things not so great.
Hard things come easy and what is easy to most comes at a high degree of difficult to myself.
I want to care about others but allowing myself to feel is overwhelming.
I want to tell others what they mean to me but expressions of any kind are paralyzing.


Do you get the idea by now? It's a constant struggle to be wanting both sides of the coin; to want something but to know if I had it the results would be just as difficult as living without it. This is why I stand by the title of this post in that living with Asperger's, at least for me, is living a life full of contradictions.

 

 

 

The Curtain Concept

                There’s a hard thing for those not on the spectrum to understand and actually it’s hard for myself to understand it as well. This topic came up at a presentation yesterday when a person asked a question about the ease of certain things and the difficulties of others. To answer this I used The Aspie Traveler series as an example as I can go to an island few have heard of in the Indian Ocean without fear and yet calling a coworker, or perhaps going into a 7-11 here in my hometown is fear provoking. What does all of this mean? Most of you will see me on stage but what you can’t see is what’s going on behind the curtain.

                First, things aren’t easy. Have they gotten better from where I was a decade ago? Yes, but I’ve also gotten rather apt at putting up a big curtain so as to not allow others to know of the difficulties I go through. Maybe I should be more open about it. Maybe I should be more forthcoming in what would help me, but then again speaking about what I need and my struggles hasn’t been my strong suit. What does hiding such things do? Quite simply it makes things worse and the struggles grow and grow.

                Here’s the thing; it’s difficult living with such a duality in that some things come all too naturally and are easy. Public speaking is an example and on the flip side simple socializing is extremely difficult. Can you see why this would be frustrating to the point of being downright exhausting? And, not only is it difficult in my knowledge of it but to have those around me be confused as to why certain things are easier than it is for others which then creates the mentality that all things come easy.

                I stay silent in this struggle because it’s impossible to proceed. I have my Kansas, and I have my stage, but behind the scenes a war is raged internally. The things that are difficult for me, and some of these things are so simple it’s almost laughable considering the things with such a high degree of difficulty I do with ease, but anyway the things that are difficult bring me down and create such a self-loathing aura when these things pop up and if you add the fact that I have a hard if not impossible time accepting that I do something good then it’s easy to focus on the what isn’t instead of the what is.

                Maybe this concept of the events that go on behind the curtain applies to everyone because, in actuality, does anyone show their complete hand? Does anyone let in on what is actually going on, or how one truly feels? Maybe not, but it’s got to be confusing for parents and teachers of those that are on the autism spectrum when some things come so easily and yet there is the mystifying mystery of why seemingly simple tasks create friction or behaviors. It’s got to be a mystery as to why a person can excel and do the most amazing of things and yet struggles with things their peers take for granted. It may be a mystery to others but the emotions of frustration and sadness that goes on hidden behind the scenes is mammoth. I know this, I’ve lived this, and I wish I could just let go and accept what I can do and not focus on what is difficult.

On The News Again

http://www.wgem.com/story/31951379/2016/05/11/local-police-train-to-better-understand-autism

The People I Knew: A Crash in Phoenix

It was morning in Phoenix and I was ready! It had been five months since I worked a national race and it was finally here! The weather was great and as I drove to the track on the extreme north side of Phoenix hot air balloons filled the tranquil sky. After a smooth day of practice on Friday it was time to finally get at it and flag racing but before racing could commence the morning warmup sessions had to take place. Morning warmup, as the flagman, isn’t my favorite part of the day because it’s just another round of normal practice, but sometimes within the normal comes the unforgettable.

                Driving home from a presentation last night I was still thinking about the events that occurred in Phoenix just five days ago. It’s amazing how fast things can change, but it’s also within the slow changes that things can, well, change. What do I mean? I’ve been reflective since last Saturday and thinking about the people I knew but no longer know. The people I worked with, the people I went to school with. I thought back to my first job and the lady that understood me and I had a great time working with, and my third job and the countless people that I worked with at the video game store. All of them were in or about to go to college and they all had dreams of the future. Whatever happened to them?

                Right before the first session rolled off I took my first office selfie of the year and the smile, oh that smile, there is no duplicating the smile I have as my Kansas above all other Kansases is about to be enjoyed. The first session went and came in and the second group went out and not halfway through a call came on the radio that the red flag needed to be displayed. When a red is called questions aren’t asked because this means there’s a serious situation and the session must be stopped immediately. I reached for the red not knowing where or why we were going red but with a feverish flair I flew the red in the air and the session stopped.

                My long drive continued on and I thought about the people I only worked with a time or two, and I thought of all the instructors I worked with at the Derek Daly Academy in Vegas. This isn’t something I think of all that often as it’s actually overwhelming to think of all the people I knew because, even though I often appeared aloof or unfriendly, I did actually care but it was so hard to show because I went to work to work and chit chatting wasn’t something I could do. To be honest I took offense to this when my coworkers would try and talk with me at the videogame store because I thought they were being disrespectful by not talking about work. Oh, how little I knew then.

                This red flag stared to become eerie. The ambulance rolled to the furthest point away from me but there was no chatter on the radio. Typically they’ll be an update of some sort but the radio net was clear. I looked over at the scene as I now knew by where the ambulance had parked but I couldn’t make out where a kart, if any was. The medics got out and went two separate ways. This was now most odd because I couldn’t even see a kart and the medics were going to what I had to assume were two different people. “What happened?” I said aloud to only myself. It was obvious we weren’t restarting anytime soon so I ventured towards the scene to assess how long we would be red.

                I’ve never been good at letting people around me know what they mean to me, but in my mind now is forever and there’s no real need because things will never change. I thought that way in school at my first, second, and every job thereafter. As I drove past Rolla I thought back to the tellers I worked with at the bank and the manager that hired me. I remembered that I found that manager’s obituary a couple years ago as she had died young because of cancer. She motivated me and she congratulated me each time I set a new record for amount of customers served through the drive through and yet I never once reciprocated any sign of, well, anything.

                When I got near the far side of the track I could see that both medics were now at a kart that was well off the track, but there were two officials standing near the edge of the track and as I started up the track, which was slightly banked, I could see that another person was on the ground. One kart, two injuries? Then, as I got closer, I could see that the person on the ground was wearing the same shirt I was. It was a fellow official and as I got even closer I then saw who it was. It was Scott; one of my biggest cheerleaders, a member of The Consortium that’s going to plan the destination(s) of the final leg of The Aspie Traveler, and one of the more interesting persons I have ever met and now he was lying on the ground motionless. I feared the worst and turned away.

                The nighttime drive was dragging on and I couldn’t shake that moment when I realized who it was on the ground. This isn’t to say I’d have had a different reaction if it were someone else, but it’s just that I have talked with Scott in length about life, travel, and most of all the autism spectrum. This got me thinking about other people I’ve known that I’ve really talked to. A fellow teller at the bank that worked in the other sensory deprivement chamber (the branch was being rebuilt so the drive thru were two separate huts about 8 feet by three feet wide) would often call and we’d talk about pretty much anything. The 5 o’clock hour was usually dead so she’d call and talk about her daughter, or angry customers she had. I didn’t so much talk but just listened but I had no customers and it beat being bored and at the time I wasn’t that interested it what she had to say, but now I wonder how her story turned out. The thing is I don’t even remember her name even though I worked alongside her for so long. How bad is that?

                I got halfway back to the finish line and emotions started to creep in. If I were to get through the day I’d have to distance myself from them, compartmentalize and deal with them later. However, I decided to go back to make sure my worst fear weren’t justified so I turned around and slowly proceeded back. And I do mean slowly because by the time I got back the other medic had installed an IV which led me to believe my worst fears weren’t true and then I saw Scott open his eyes. I breathed a heavy sigh of relief but I made sure to keep my distance. The race director, another official, and the medic were there and I kept a safe distance away and it was obvious Scott was badly injured, but when he managed to get his cell phone he started texting and someone asked, “Would you like me to do it, Scott?” Scott responded with a dry, “Nah, I got it.”

                The lights of the metro area of Saint Louis was now approaching as the clock was almost at midnight. It was going be coming up on six days since the crash, but the emotions are still just as thick now as they were as I first saw Scott open his eyes. We, well, I go through my days taking everything for granted. Maybe most people do, maybe if everyone realized the frailty of everything life would be too difficult. When I go through phases of wonder and sadness of the past my body tries to compensate by taking in the moment of now. But how can I do this? How can I fully let people around me know what they mean when expressing emotions is so difficult? Some misguided experts have said, “People on the autism spectrum have no emotions, have no empathy, and simply don’t care,” but if you could’ve felt my concern in the moments of this crash you’d know they’d be false. If you knew how I’m driven to tears on wondering what happened to the people I knew you’d know they be false. It’s awful knowing I’m lacking in the ability of expressing things in the now only to be regretful after the fact, but this is the maze that Asperger’s creates and getting out of the maze and finding the way to express things isn’t easy.

                People tried to cheer Scott up but Scott was rather open about his injuries and wasn’t in the cheering up mood. Also, serious attention was being given to the driver that was also involved in this incident. As for what happened, I don’t know, I didn’t see it, but as the transport ambulances arrived I thought of telling Scott, “good luck” or, “best wishes” but nothing sounded right so I stayed afar watching silently.

                When I got to my exit to return home my phone buzzed. It was Scott responded to a text as I had, well, I didn’t exactly ask him how he was doing because I knew it wasn’t good and there’s a long road to recovery ahead, but he responded with the same positive attitude I’ve always seen him have. The fact that the text came right as I was thinking all these other thoughts was downright uncanny, but it was somewhat of a relief to know my friend was still him; slightly broken but still him.

                The rest of the race weekend went off without any other major hitches, well, nothing the likes that was seen in what was supposed to be a normal warmup. It was eerie just how fast an incident like that is forgotten in the heat, well, in the cold and rain (I couldn’t believe it was Phoenix!) of battle, but the saying “the show must go on” actually was experienced. With each down time I wondered how he was doing and I did a text from Scott stating that, “I will live” and then there were a bunch of emojis so I figured the pain medication must’ve been doing exactly what it was supposed to be doing but then the next race would start and I’d go right back into being hyper-focused at the matter at hand.

                Life is odd. One minute you’re surrounded by people you think will be there forever and then a job changes, or you move, and slowly the people that were a part of your daily life are gone. People come, people go, and maybe for most this is normal and isn’t a major occurrence the same as if in a television show the cast of extras in the background were to suddenly be changed. However, even though I don’t show it and I do everything I can to deny it the people around me whether it’s the major characters or the extras in the background mean a lot to me and maybe more so than to what would be considered a “normal” person. I can’t state it, I can’t express it, but I do really care about those around me and it’s more than just the fear of change. I once again went back to all the people I knew and wish I could just have one more conversation, maybe attempt to chit-chat, and experience their existence one more time. This is a thought I never truly had until this week, but after bearing witness to the aftermath of such a serious incident life seems more precious and those around me don’t seem invincible.

                When the race weekend was all said and done and the final checkereds flew over the field I was spent. I’m typically this way after a race weekend but I had been forcibly denying my body any allowance on feeling. At the track I thought of those misguided experts and I thought, “If they only knew!” I had done what I thought was impossible and made it through the weekend with my emotions intact and I knew why those misguided experts would come to their conclusions. For me to operate I have to deny myself the emotions or I’ll become over encompassed by them. The solution to this is to deny the feeling of them which when I got back to the hotel room the emotions hit.

                As I pulled into my parking spot at home and stared across the field that’s adjacent to it I tried to think of a balance I could have but balance isn’t my strong suit as I’m either all in or all out. I’m either stoic or emotional and it isn’t until after the fact, or well after the fact, that I show emotion. I must try though, and this blog post, in a way, is that attempt. I don’t know exactly how to say, “get better soon” when the injuries of Scott’s have so many broken bones, and while I know I can’t go back and have a conversation with Carol at the bowling alley, or Mike at the videogame store, or the nameless teller at the bank, I know I can await the next time Scott and I are at the finish line talking about the previous race and maybe even a little bit of chit-chatting as we await the next race in the sport we love.

The Alternate Route

Let’s say you are in a new town motoring down the highway. The surroundings are unfamiliar but you planned ahead and know the route you need to take. As you get to the city center a sign above the road reads, “Exit closed ahead, use alternate route.” Here’s the thing; that exit was your exit. Now what? You don’t have a map, you don’t have GPS, you had this grand plan and now you’re going to be left on your own to navigate the roads in an unknown city and you’re just going to have to hope find the right road.

                Does this story sound familiar? Okay, it would’ve been a common occurrence two decades ago before the advent of all this excellent technology, but in a non-literal sense does it sound familiar? I had my life mapped out, I knew what I wanted and I knew the route to get there, but so often in life things don’t go according to plan and when I received my Asperger’s diagnosis at the age of 20 and the lack of guidance my doctor gave me I, in essence, was in that road situation I put forth earlier.

                I was lost, my family was lost, and there wasn’t really any map of any kind to illustrate where I could go, what I could do, and how to get there. My response to this was to give up. What was the destination now and how could I possibly get there? What’s the point of trying to get somewhere when I had no directions and no one seemed to have answers?

                The thing is this; I did give up for a long time and I didn’t care much about my life. However, the support I had around me kept me on the road and while my original roadmap didn’t quite pan out, the journey of the roads I took led me to where I am now. There’s been something troubling me as of late, though, and that is I’ve been receiving an increase amount of communications from parents about this same problem I put forth in the start of this.

                As I said, eventually people put me on the right roads and slowly I began to learn about autism, learn about myself, and found my voice. It was a long road, perhaps keeping the road analogy alive you could say it was the scenic route, but I did get direction. However, there are many out there that are seeking that direction, and where to turn to. With the rates of autism continuing to rise more and more families are going down the road I was on. Each person, I think, has an image of what they want and what it will look like and when “autism” is put into the roadmap things aren’t what one envisioned. Where does one turn? What road should one take? Is there a wrong road? These are the questions parents are asking (in a non-literal fashion) but the questions are increasing and across America, and probably the world, families are seeking that road map, that right path.

                My journey on the roads I took were long, but I know I wouldn’t be doing what I’m doing without it. Were the roads difficult? You bet they were! In the world I lived the concept of hope didn’t exist for many years, but somehow things turned out. Now what was the magic road? Well, there is no one road, but having a few key people at the right time pointed me in the right direction started the journey.

                Because each person with autism is different the path will be different and the destinations will be different, but support and hope are vital. I’m thankful I didn’t go on this journey on my own and perhaps that’s the first place to start. There’s a lot to be said to not be alone in a journey in unchartered territory, and my family was there for me when I certainly wasn’t there for anyone. I may not have shown it, it was registering and I wish I had a way to tell the parents that have just or are about to go down this road of diagnosis that simply being there and being a support is gigantically important even if there is no visible sign that it matters. It does matter. The same goes for any person within the education staff, state staff, or any staff that can provide even an ounce of support.

                My story didn’t end with me wandering aimlessly trying to find my way back on the path I originally set out for in my life. Would that path, which was me becoming a race car driving legend (trust me, I had the skill), have been enjoyable? Oh, I’m sure. The places I’d have gone, the people I’d have met, the fame, endorsements. It would’ve been awesome. However, while trying to find myself in the midst of the alternate route I found a different path. Is it better? No. Is it worse? No. It’s different and different is okay. Okay, this difference is much better because I’m helping many more people than if I were winning races on Sundays, but different is okay because everyone eventually, autism spectrum or not, is going to end up in a situation where they hit a “exit closed use alternate route” situation. Life isn’t predictable nor is it fair, but support and direction can be the difference between finding that alternate path or getting stuck on a cloverleaf interchange going around in endless circles trying to find a way, anyway, out of the path that they’re on.

                I don’t have that magical roadmap, I don’t have the answers as to “do this” as my skillset is in describing the mechanics of what’s going on behind the scenes, but if this helps even one person move forward towards finding their right road then everything I went through finding my way has made my journey the most scenic of drives as I've learned that I am not bound by any one path, and growth is always possible meaning there's always a way forwards.

Defining It

This post originally ran July 26, 2010 and I'm in a place where I need to remember these words. It's so easy to fall into the trap of being defined...


When I first got my diagnosis back in 2003 I don't think many people understood what Asperger Syndrome was. Outside of the elite professionals in the field I feel like it was misunderstood, if understood at all. "So is it or isn't it autism?" was a question I had to answer all the time. It was frustrating to the extreme because, at the time, I didn't fully know what it meant.

Shortly after my diagnosis I looked on the internet to try and better understand this foreign sounding syndrome I had. What I found was not helpful at all because this website said that, in very concrete language, "People with Asperger Syndrome will never have a job, will never have friends, and will never be happy."

There were no words like "may" or "could" in the website I read. This was the first reading I did on the subject and I instantly began living life in a proverbial vacuum. Nothing mattered because I believed the words on that website. Up until that point I had lived my life just fine, but after the diagnosis and that website the name Asperger began to define me.

During the next 15 months I pushed everyone and everything as far out of my life as I could. Why would I want to form a relationship or friendship when it will just be destroyed because that website, in bold words like "never" said I can't?

The depression was immense and it started to consume me. I believed those words to a fault and eventually a fuse blew in my brain because I started to write about my experiences. Over the next year and a half I wrote my book, "Finding Kansas" by accident because I was writing for the sake of writing.

Something changed while I was writing as a thought entered my mind. This thought has bounced around in my mind for years now, but was realized yesterday and this is why I am writing this today.

There is nothing worse than when one lets something define them. I let Asperger Syndrome define my life. I accepted failure before I attempted something because of it. This isn't to say I can conquer everything about the syndrome, but I feel as if I lost my identity when it defined me.

What did I realize yesterday? I realized that, in a way, I am now defining Asperger Syndrome. In a way, with my concepts I have set forth here on my blog and in my books, I am, but that's not what I am really getting at. What I mean by that "I am defining it" means that I am not going to let words on a website dictate who I am. The world as a whole wants all conditions to fit into a nice and tidy box, but the autism spectrum is so vast and complex that no two people will be the same. This means that each person on the spectrum will help define the spectrum.

Be it people on the spectrum, or family members, we all will help define the autism spectrum. If you have a son or daughter on the spectrum and you fall into the trap I did and let the words I read on that website define the person they may become that person. Don't let this happen! Each person is different, there is hope, and third party words should never define a person. This is why I write, to give you an unique "behind the scenes" look as to how the mind on the spectrum may work. I won't kid myself and say that all people think like me, but with each comment on here that relates to me, or each e-mail of thanks I receive, I reflect back to when it defined me and I smile at how naive I was.

The autism spectrum, in society, is represented by a puzzle piece. I don't know if anyone has looked at it like the way I'm about to say, but this is great because a puzzle piece isn't defined by the puzzle, it defines the puzzle with many more pieces. That's what each person can do. We all have different stories, and through these stories we can get the world to not just know about us, but to understand us! So please, don't be defined by it if you have it or are a family member of a person who does, but rather help define it so the world outside the spectrum can understand.