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Friday, April 29, 2011

The End of Autism Awareness Month: Don't Lose Hope!

Today is the last weekday of Autism Awareness Month my last blog of the month. Yesterday I mentioned the momentum I feel, but I also, from all my travels across Missouri, feel that parents have more hope in this month.

Having autism featured across many forms of media, I think, makes everyone involved on the spectrum not feel so alone. Is this the cause of that sense of hope I felt? Perhaps so.

I do have a fear though and that fear is that come the start of next week this momentum and sense of hope that I came across disappears. From the time after I got diagnosed to about two years ago I said the same thing over and over to my dad, "There is no hope." I now know I lied each time I said that, but the feeling of believing that sentence was a horrible experience. It is somewhat ironic that what I believed is exactly what I am telling people not to believe. It is true though because if one believes there is no hope then there very well might be none but not for the reason one believes. In my time of bleakness my dad told me, "Okay Aaron, you can believe that, but I will have enough hope for you."

Hope is a vital trait. Hope, I believe, is that trait that we have that let’s us believe that we can grow. Hope tells us tomorrow is another day and with each day we can become more. Without hope we have accepted our fate and regardless of diagnosis or lack of diagnosis, a person without hope will be defined by that.

How does one find hope? Well, that isn't an easy answer. It took me years to do so, but I firmly believed I would never be anything except what I was. I was wrong and despite my belief I feel I have grown. In fact, now that I accept who I am, I know I grow everyday. It used to define me but now I accept the challenges.

Just because May 1 rolls around and the news stories of autism may subside does not mean our mission is over. One reason, I feel, a lot of parents and families lose hope is the constant struggles with aspects of society. They can get so burned out fighting those battles that they have nothing left at home. It is for this very reason that just because Autism Awareness Month is over we should not let our voices be quiet. The momentum is there and I know next year we will be closer to the destination that I talked about yesterday and the year after we will be even closer, but today we are still traveling towards it and there are those people now that believe there is no hope. If you know a person or family like this, do what you can for them, but most of all I might suggest you do what my dad did for me. A little hope can go a long way.

Thursday, April 28, 2011

Are We Getting There?

I am back on the road, or rather in the air as I write this, but I wonder if we are getting there. Where? The destination of awareness and understanding. I don't know if there is an easy way to gauge that answer. I know everywhere I have turned this month there has been something on autism.

Just today the people in front of me on the first leg of my flight were talking about autism and what it was. They were unfamiliar with what autism was, but the article in USA Today about, "early diagnosis may make a world of difference" got them talking.

From just hearing those two people talking I think the destination is slowly being reached, but the destination is still far away. It is a highly important destination and it may have many levels as it isn't so much just to have one sector of society because all areas to need to be aware. If just one area is lacking then the destination can not fully be reached.

Why is this? Well, if all doctors aren't informed then a parent won't get the diagnosis. If there is no diagnosis then how can the school system know what to do? If this is reversed and there is a diagnosis and the school systems are unaware then the diagnosis, in terms of education, is irrelevant. If a new parent isn't aware of the signs then much time could be lost in talking to a doctor, or course if the doctor doesn't know then that conversation will prove to be fruitless.

As depressing as that last sentence may be I think we are getting closer. My only fear is that this momentum I feel and see will end May 1. April is Autism Awareness Month, but what does that mean for the 11 other months? My life is dedicated towards Autism Awareness, but unlike baseball there is no season as the need is constant.

Tomorrow, wi-fi permitting at the hotel, I will write my Autism Awareness Month send off story so hopefully I get to write it.

Wednesday, April 27, 2011

Lost In Pictures

I am still fighting off this cold and last night around 10:00 PM I got to the point of just needing to go to bed. I headed towards bed, laid down, and instantly woke up. I was a bit aggravated, but I decided to go through a book that was beside my bed.

The book was The Century by Peter Jennings and as I turned the pages, doing less reading and more picture viewing, I became transfixed on several photos in the early section of the book. What does transfixed mean? Truly, as I stared at the people in these photographs, my mind began to thnk of just who those people were and the lives they had led.

A photo is a strange thing as it captures that moment; not a second before, not a second after, but that very moment. In that moment there is so much to take in and my mind tries to do so. As I stare into a photo, and for me to get into this "Lost In Pictures" stage it usually has to be a very old photo, it becomes very much like eye contact.

There was one photo from the 1910's of a bunch of kids that was truly overwhelming. I thought of all the stories that could be told from just that one photo. Then I made the mistake of making eye contact with those in the photo and just as I say when it happens in person it was very much like looking into their soul.

Shaken, I turned the page and then saw a picture of a Gulf gas station in Louisville, Kentucky from 1926. My first thought was, "I bet they weren't paying $4.00+ a gallon" then I looked closer at how the cars were almost posing for the camera. Again, my mind began to think of the story behind the photo. Who owned each car? I've heard the over used line of, "A picture is worth a thousand words" but I see it as, "a thousand empty words" because I want to know the whole story. What came before? What came after?

When I was in school I would constantly skip ahead in the Social Studies book to see the photos and even at my younger age older photos made me sad. Yet, even though it did make me sad, I would look in awe at those moments in time captured forever. I don't know if this is just me being me, or if this wonder and overwhelming sensation of older photos is caused by me being on the autism spectrum? So I ask you, have you ever gotten lost within a photo?

Tuesday, April 26, 2011

The End of Bowling

Last night was the final night of bowling for the season and it is always a difficult time for me. I am thankful that after taking a year off my wrist held up, but at the same time any end of a routine is rough for me.

Right now it sort of feels like the end of the school year. Granted, I did not like school at all, but nonetheless when the school year was over I felt a void within me as the schedule changed.

Monday nights until September will be awkward. The weekly trip to Fortel's won't happen and I won't have the usual time to socialize. I could join a summer league, but that would mean a new team with new people and I'm not the biggest fan of anything with the word "new" in it.

I love routines and never know exactly what to do when they're over. Last night I sat in a fog and couldn't believe that it was over. I must have said, "But we just started!" at least five times (we started in September).

By the time September does roll around I will have adjusted to life without bowling and the the first few weeks will have the same fogginess as the next few weeks will have for me now. I'm sure everyone likes their own routines, but for me I believe the urge to keep them is stronger and the responses when they go away is stronger as well. There in one good thing about not bowling though and that is I will have no more fights with the 10 pin until September.

Monday, April 25, 2011

The Pitch

Saturday morning I woke up I really wasn't thinking about the pitch I would be making.  It wasn't a sales pitch.  However, waking up, my knees felt like Jell-O when I realized that thousands of people would be watching me on a field.

What pitch am I talking about? Because I raised the most money in the All Stars for Autism campaign I would get to throw out the first pitch at the Reds vs. Cardinals game.

Saturday morning I threw a baseball in front of the house to practice. It was raining, but I had not thrown a baseball since 1998 so the practice was much needed. The first several pitches I threw were low so I corrected that and had confidence.

Getting to Busch Stadium was a surreal feeling. I had been to games before, but never with the expectation of being on the field before the game! With each step I took I thought, "Oh my goodness! Oh my goodness!..."

When the time came we were led to the underworld of Busch Stadium. Truly it is an unseen world and the number of offices, meeting rooms, and cubicles would astound you. Eventually the maze was traversed and we made it to the "First Pitch" room.

I was in a highly anti-social mood as this picture shows (I'm the guy in the corner all by myself) and if you have heard me in a presentation you may remember my "Positional Warfare" that I talk about and I was in a major war. It was so bad that saying simple words were difficult. Many thoughts went through my head, "How do I look? How bad is the pitch going to be? Do I just go to the mound when they say?" Those questions and many more attacked me relentlessly.

In the First Pitch room I was informed that the a you boy named Jason Brooks, who was 2nd in fundraising, would also throw out a pitch before me. This fell on deaf ears because I was so consumed with what I was going to do that I didn't really hear anything going on around me.

Eventually it was time. We were led from the room to a hallway that led out onto the field from behind home plate. What did this hall look like? I can't recall one thing about it because I was so nervous. All my mind's DVR was off due to the over-processing of nerves. I do remember the contrast from going into a quiet, dark tunnel to the electric atmosphere that is Busch Stadium.

I'm used to standing in front of groups speaking, but this was different; there was no presentation and because of this I had no idea how I should be standing in the space I was in. I'm sure I looked either scared or emotionless because of this and I constantly scanned my surroundings trying to just appear comfortable (something I was not).

As the minutes ticked by I realized just how rare of a chance this was and I tried to soak it all in, but I kept wondering if my posture was right. Also, there were constant photos being taken, such as the one to the right. I tried to smile and thought I was, but after seeing the photos my smiles were not all that present.

After many more photos it was time. The group I was in was lined up on the warning track. Ron Ekstrand, CEO of TouchPoint, was on one end and I was on the other.  The introductions began of who was who and with what group they were with. As the names came down the line I began to worry because I didn't know if I was supposed to make any gesture when my name was called. I mean, do I raise my hand? Nod my head? What was I supposed to do? Panic set in and as soon as my name was called a big red bird tapped me on the shoulder.

This tap came from the Cardinals mascot, Fredbird, and he tapped as soon as the announcer said, "And raising the most funds is Aaron Likens" as if to say, "you?" I instantly smiled as it was such a relief because this game me direction. I nodded my head to reply and he pointed again and I nodded again and for some reason, at that very moment, I understood the area's love of baseball. Why did this happen? I don't know exactly, maybe I finally got over the fear I had, maybe I felt the atmosphere, whatever the case at that very moment I think I became a true fan of the sport of baseball.

Anyway, after several head nod exchanges with Fredbird he pointed to the mound. It was time. I then remembered that I would be going to the mound with the Jordan.  He was recently diagnosed with Asperger Syndrome like myself, and I knew he was more nervous than I was so I lead him and pointed to the mound.

During this time the world went away. My only concern was getting him to that mound, or somewhere close, to throw that ball. I did notice how amazing walking on the grass of a Major League ballpark was (trust me, standing on grass never felt so amazing!) but I was more focused on Jordan. We made it to the mound, but he seemed a bit concerned with the distance so I asked him if he would like to move up. He did so and proceeded to throw the ball towards home.

I find being around kids very awkward, but nobody there would have thought so. Maybe that's because I felt awkward as a kid. I wanted to throw the ball and remember that day so much that I didn't realize where I was standing; I was standing on the mound! I didn't notice I was in the heart of the stadium. My memories are very foggy of this, except for the Jordan's smile as the ball made it across the plate.

It was my turn, but the Jordan was standing in front of me. I was worried I'd hit him in the back of the head and the video shows me making a very contorted face and the exact thought going through my mind was, "Do I walk up and move him over a foot, or aim higher?" I was in a crisis of consideration and determined it'd be rude to walk forward, move him aside, and walk back. That being the case, I was happy I practiced because had I not I probably would have hit him in the back of the head and the amount of boos I would have received would have been much higher than those for Brandon Phillips of the Reds. Without thinking about it and with concern of form I threw the ball and it made it over the plate and the catcher, Skip Schmaker, had to stand to catch it, so it was a bit high, but over the plate.

After the throw I led Jordan towards home plate where more photos were taken and I think at this point in time I regained the ability to smile. Skip, Fredbird, Jordan, and I were all in the photo and then Skip shook my hand and just as fast as it began it was over.

We headed back to the underground world.  One person asked why I wore blue. The home team wears red, but since I got the chance to do this because of fundraising for autism, and since I'm on the spectrum, and it is Autism Awareness Month, I decided to "Light it up Blue" by wearing blue to the mound.

Moments like this come once a lifetime and while the Cardinals lost (I blame the rain delay in the 8th, as they forgot the, um, motivation I provided. Yeah, that's it), I was on the mound, and I got to make a little kid's day too. I have since been told he doesn't trust many people and his parents were shocked he went with me so all in all it was a true once in a lifetime chance. I would like to thank everyone who made this possible by donating. While I got to do this amazing thing the money raised is going towards helping those with autism.

I did mention video, my dad videotaped the experience and here it is.

 


Friday, April 22, 2011

Being Home

This feel quite odd! I'm not talking about the sneezing I'm still enduring, but rather the face of simply being home. So far these 22 days of April have been the fastest days of my life. It seems like five minutes ago I was driving to Lebanon on March 31st for that presentation.

As fast as these days were they surely are my favorite days of my life! The amount of travel, amount of people talked to, and the stories I heard from those in attendance reiterated the fact of the need out there. I don't know what I do in my presentation, but I am coming to realize that people truly listen to what I have to say.

With all this being so it feels so weird to be home. After 22 presentations this month and hotel after hotel it is almost impossible to describe the odd feeling of waking up and knowing exactly where I am. It's also weird not having to worry about my GPS getting me lost down Pig's Hollow Road, or if I am going to be early or late, or what fast food place to eat at.

In the coming weeks I will be playing the travel game again with trips to Tucson and the L.A. area coming up. And of course tomorrow, regardless of I am feeling, I will be throwing out the first pitch at the Saint Louis Cardinals baseball game. So, while it may feel weird to be home, I better enjoy this because next week I am gone again.

Thursday, April 21, 2011

Little League Memories and The Pitch

An exciting thing will happen this Saturday! This is something I never thought would have happened, even more so after you know just how my little league career went.

For one reason or another I deeply wanted to be on a little league team when I was in 3rd grade. Why was this? I can't remember but the urge was strong even though, at the time, my eye-to-hand coordination was awful on a good day and I had the poise of an Olympian sprinter who had vowed not to jump in the hurdles.

Regardless of these issues I was a little league player and don't really remember if I had a good time at it. I played left field which was sort of like being a ghost in isolation because nothing happens in left field. Over the course of the year I got better at fielding during practice, but batting was something I just could not get a grasp on.

In the league I was in they had this silly rule that if the bases were loaded the batter could not be walked; this single-handily took out my strongest ability because I had a, "good eye". Okay, maybe I didn't have this good-eye and it was that I simply couldn't hit the ball, but I'm sure I led the team in walks.

In the one season I played I managed to get on base via hitting the ball once. I could hit the ball, and many times we had to search for the ball as I fouled it behind the screen, or my other favorite place to  hit the ball was the 1st baseman's glove.

During the games I tried to get into the team spirit, but often times I felt like I was just missing something. This is hard to explain, but maybe the best way to say it is I mimicked the other kids, and I cheered, but I was just doing so out of thinking, "if they are I should too".

As the year wore on I got more and more discouraged. I can remember during the summer attending a baseball camp put on by the high school and the people who were the coaches used vulgar language and seemed to yell a lot. There was no pleasing these people and during this camp I had my best hit ball ever, but I was told to, "hit it further next time". This quickly led me to believe there was no pleasing these people and being on a team sport was pointless and I dropped out of the camp and never played on a team again.

Now why do I recount these horror stories from 1992? Baseball was a sport I never thought I'd do anything in. However, last month I ran the story about the All Stars for Autism fundraiser and what I think I left out was the person who raised the most would get to throw out the first pitch on April 23rd as the Reds come to Saint Louis to face the Cardinals. Thanks to everyone who donated as I was the person who raised the most!

So, this Saturday, I make my Major League debut. It's only for one pitch, and the one pitch is all but irrelevant to those who attend, but to me this is my one chance to have said that I, "made it" to the top. Again, I know full well that my throw of the ball means nothing, but to me, well, let's just say I don't want to put the ball in the dirt. Throwing out the ceremonial first pitch is something I probably will never have the chance to do again so I have to make it count.

Sometime either today or tomorrow I am going to spend some time to practice throwing a baseball as I have not thrown a ball since 1998. The realization has not set in yet that I am going to get to do this. What a contrast to my little league career when I was that invisible soul in left field. I'm sure everyone who saw me play thought I had no future in the game, and they were all but right, but on Saturday, for one pitch, in a Major League Stadium, I will be the pitcher. Sure, there won't be a batter, but that's beside the point; let me have my one pitch in glory. I'm sure it's nearly every American kid's dream growing up to one day play baseball in the Major Leagues and against all odds I will have made it to the top if only for one pitch. Wow, this is going to be an awesome experience!

Tuesday, April 19, 2011

Rebound

Yesterday I had a presentation in Marshall. For the most part my presentations are entered with a clear head and no other thoughts. Yesterday, however, proved to be different.

I arrived 45 minutes early so I enjoyed reading more of the Adventures of Sherlock Holmes while waiting for other people to get there to let me in. Once in I quickly realized that we had a problem; there was no projector.

Last year I talked about the few times I did a presentation without a PowerPoint presentation, but right now, in my 90 minute format, I have become so accustomed to it that I don't think it would be the same without it.

With that being so I began to panic as a projector was sought out. Minutes passed and I got more and more anxious. The whole building was searched and no projector was found.

Minutes later a room in the other building was found and it had a projector coming out of the ceiling. As we walked towards that building I breathed a sigh of relief. This sigh was short lived as I entered the room.

The room was small and I began to worry about the cozy confines, and then setting up the projector became difficult. I tried various cable methods and could not figure out how to get my PowerPoint onto the projector. 6:00 was nearing and people were already seated and I just wanted to find a hole to crawl into a disappear. I was anxious, nervous, and fearful and within minutes I was expected to speak.

At 5:59 the TouchPoint staff person that was there tried a different cable combo and there it was, my PowerPoint, on the screen. Crisis had been averted, but what about me? I had been visibly shaken and I think my worry was obvious. I was having a hard time putting into words the frustration and fear I was experiencing, but as soon as 6:05 came and everyone was seated I started my presentation. Was it good? After my first sentence it was like the whole projector ordeal never happened and by the end I had forgotten the drama until it was brought up again. It was a tremendous rebound and maybe this is just another great example of the power of Kansas.

Tonight I will be presenting in Columbia so if you are in the area, or know someone who does, the event is open to the public. If you'd like to attend please RSVP by calling the TouchPoint Columbia office,

Monday, April 18, 2011

The Autism Intervention Conference Presentation

On Friday I was at the Thompson Center's Autism Intervention Conference. During the morning I worked the TouchPoint booth and forgot how much fun it is to work a booth. This fun I mention came after the tense moments of trying to figure out where I would be speaking, where to get my name tag, and then where the expo hall was.

I walked past the room, got my name tag, but then for some reason I had this tremendous fear of entering the expo hall. I could see the TouchPoint booth, but for some reason I just could not walk in. To buy some time, and to weigh my options, I moved my bags from my hotel room to the car (the conference was at a hotel). After this was done I walked back in and headed towards the expo hall.

It wasn't so much to walk in, but what would I say? Nothing had been planned with me at the booth and I had no idea what I should be doing so the only thing I was able to do was worry about what I should be doing. Eventually I walked in and said hello and was asked if I wanted to hang out around the booth with my books. This was exactly what I wanted, but there was no way I could have asked for that.

During the expo hall time I had many great conversations with people and I love how fast people catch onto my Kansas concept (what is Kansas? See my glossary). There was one disconcerting aspect to this time though; I met a person from North Dakota! I have given over 120 presentations in front of over 5,500 people and never had I met a person from that state. You see, in my presentations I talk about Kansas then say, "Now let's say I cross the border into another state, such as North Dakota..." I don't have anything against the state, it's just that there's never any news from there and I never met a person from there so, in my presentations I ask, is it there? Well, after meeting this person I now know it is there so I am going to have to find a new state to pick on.

As my presentation time neared I didn't really know what to do. For months all my presentations have been with a TouchPoint staff there. It's very structured and always the same, but this was a new situation. As 2:30 rolled around and the break out session before me finished I walked into the room and got my laptop out and connected the wires. I did not wait for direction as I figured if I waited I'd panic, and if I got to that point I wouldn't ask for help so for one of the first times in my life I set up and if I got yelled at so be it. Of course, my catastrophic thinking was unwarranted and what I did was exactly the right thing and at 3:00 I began my talk.

There was something about this forum that for some reason my presentation was just fuller. I keep saying this and maybe I am just getting more and more comfortable, but I am noticing a more visible impact with my stories in terms of the emotions of those who attend. Maybe I've always had this and I never looked at anyone. In any event there were times people laughed to tears, and then others people were moved to tears.

At the end many people gave me compliments which I am getting better at accepting. When I started I'd just give a nod of some sort, but now I am managing a half smile and a "thank you". I don't know if anything else is expected and it still is a little bit awkward for me.

Later today I will be in Marshall, Missouri and then Tuesday night I will be in Columbia once again for a presentation that could see a large audience. This past Saturday I had presentations in Brookfield and Kirksville. I had been in Kirksville before, but I had no recollection of the building or the room I presented in which was somewhat of a shock to me. I did coin a term though I believe, I called the gameshow "Wheel of Fortune" as, "sensory candy" because that spinning wheel is simply the most awesome thing ever!

Friday, April 15, 2011

Onward

Yesterday I drove to Jefferson City for a presentation. This drive started my Central swing of my Autism Awareness Month tour of Missouri. Before my drive, and while on the first 2/3rds of my drive, I was starting to get depressed.

Someone told me very recently, "Not to be too hard on yourself." and I said only if that were possible. Having the memory I have and having the emotions I have in terms of either being at a 0 or 10 (this means there is no middle ground. Either I have no emotion I feel it to the extreme) every mistake I have ever made lives with me. Please, you the reader, don't get depressed at my comment. This is something I feel is just one of the challenges of being on the spectrum. It is something that is manageable, but at times it is harder than others.

What caused this? Well, the memories of relationships struck again and when they do the impact to my system is large. Maybe it is all the traveling that I have done and the tiredness that comes along with it. I have noticed that there is certainly a connection between tiredness level and the ability to filter the "10's" of emotion. Again, please don't get depressed by this as it is this, and experiencing this, that allows me to do what I do.

I may be hard on myself and I my still beat myself up for relationship disasters that are over a decade old, but it is this that drives me. If I made no mistakes how valuable would my presentations be? It is in error that we grow and by my, "being to hard on myself" I am able to break down not just the what, but the why.

Also, it is in these times that the writing bug bites and I write my best stuff. Again, if I were happy 100% of the time my writings would have no merit. This isn't to say that I want to stay at a "10" but I don't think anyone on this Earth is always happy all the time.

These events come and go, and when I am in one my presentations are always more meaningful and my persona is much stronger. If I were unable to speak my emotions and unable to recount the stories I do I would be well past a "10" on the 0-10 anger scale. Feeling what I do, and the emptiness from my relationship disasters I recount in my presentations, I want to express that so others might be able to understand the way the mind on the spectrum may think. I used to be in that state; unable to communicate how I feel. Now I am the opposite and that too can be a problem, but it is a problem I am glad I have!

Last night 54 people attended my presentation and I usually will not allow myself to comment on if my presentation was good or not, but last night I was on my game thanks to the level of emotions I was feeling. Today I will be presenting at the Thompson Center for Autism's Autism Intervention Conference. As I write this I still feel somewhere near a 10 on the scale of emotions, but I carry this with pride. Again, if I had not made the mistakes I have then my words would be empty. By living, and erring, I have grown and today, once again, I will move onward by giving my experiences of my life and not just the story my the reason why things happened the way they did. Before I wrote and before I presented I would have given anything in the world to not have had the experiences I have had, but that was before I realized it is in error that we learn who we are and I would not trade in any experience because I could not be happier to be myself.

Thursday, April 14, 2011

The Tour Begins Again

In a couple hours I will be back on the road. This time I will be headed to the central part of Missouri with a presentation tonight in Jefferson City.

To say I have been looking forward to this would be an understatement. Truly, as soon as I woke up on Sunday, I was waiting to get back on the road.

I have always loved to travel, but to travel and to raise autism awareness, well, it's the best of both experiences!

This is an honor to do this and with each mile I drive I think back on how many events had to happen just so to get here. This wasn't an overnight success story, this wasn't winning the lottery, but rather it was many years of thinking, writing, and the help of so many others.

I've got a lot to do before I leave so today's post is short, but wow, am I excited!

Wednesday, April 13, 2011

A Close Call

It came down to the wire. If one play would have been different the end result would have differed. What am I talking about? Is this a recap from a NHL game? A tale from a race? Were the bases loaded, down by three, with a full count in the bottom of the 9th? Nope, this story is of my drive to the police academy this morning.

I have always lived by the rule that there is noting worse than being late. I used to reflect that rule on everyone else and there was no greater insult than when someone was late. Over time I realized that I am the only one who is always early (sometimes 90 minutes early!) and have grown to realize that getting mad at others for being late is a waste of time.

Be that as it may I still have to be early. This morning, however, getting up was a challenge. I had a presentation last night and was my endurance is starting to waiver. Yesterday was my 15th presentation in 12 days so I think anyone would be tired and because of this getting up was a challenge.

The "snooze" button was hit on my phone every five minute for over an hour. I wanted to get up at 6:17 (I, for some reason, always set my alarm to a number that isn't a '5' or a '0') and eat at the Courtesy Diner before my presentation. 6:17 came, then 6:37, 6:57, and finally at 7:27 I got out of bed and knew I was in a time crunch.

Anxiety? Yes. Self disappointment? Very much so. Glad I have a new car with plenty power? You have no idea! I have never been late to a presentation and being late to a police presentation would not be acceptable. I quickly got ready and was out the door within four minutes of getting out of bed.

Have you noticed that any time you're running late traffic is always worse? I have and that rule played true as my car with plenty of power was useless as the traffic on Hampton was bumper to bumper. In fact, it was bumper to bumper all the way from Hampton, to the I-64 ramp and I did not get to use any power until I got on the exit ramp and then I floored it.

As I reached the top of the ramp the light switched to yellow. I am a stickler on this as yellow lights mean stop in my book because Saint Louis now has red light cameras at certain intersections and it seems each light's yellow is on a different timer therefore messing around and going through a yellow is not worth the risk. I also have the rule of not being late and that rule trumps the rule of yellow so I flew around the right hand corner and made it through as the light went red.

The time was now 7:48. My presentation starts at 8:00. I had to go from Clayton Road up to Page and then West about a mile.

Have you ever noticed that when you're running late all the lights seem to plot against you? Every light I hit went red right before I got to it. Aggravation was setting in and I watched each movement of my clock on my dash in dismay. 7:50, 7:51, 7:52 and then 7:53 came and I finally made it to Page.

While sitting at the red light at page I looked at my phone's clock and at that point in time my phone rang. I did not recognize the number, but using logic I determined that it would be the person running the CIT training and I knew he would call me to ask where I was. Sure enough my logic proved true and I said I was just about there.

The following two stop lights got a laugh by stopping me and I thought about going through one red because there was no traffic. But while my rules of yellow are my own the law is the law and my personal vendetta on not being late could not trump the law of red.

I pulled into the academy parking lot at 7:57 and I ran into the building and entered the room at 7:59. I noticed something as I entered the classroom and that was I had forgotten to take my sunglasses off! My regular glasses were in my car, but there was no time to get them so I did my presentation without glasses. Thankfully the font is large on my PowerPoint and making eye contact with the officers in the room was impossible because I simply could not see it. Perhaps this could be a presentation tactic should eye contact ever become difficult for me in presentations.

So, while I did cut it close my streak of being on time continues. I will be sure not to let this happen again because this type of drama is not something one should ever wake up to! And, if everyone did have my rules of being early, the roads would be a very scary place so for that I am thankful not everyone is a strict as I am on being early.

Tuesday, April 12, 2011

The Drive Home on Saturday

I should have written this yesterday, but I was not in the full writing capacity I felt I needed to be to write this to the level I feel I need to be to do so.

On Saturday I woke up in Joplin. My journey had spanned 10 days and now my final presentation of the first half of my month would be at the TouchPoint offices in Joplin.

The presentation on Saturday felt as if that was going to be my last presentation of my life. I dislike this mindset I have, but since I have the, "past, present, and oblivion" mindset it truly felt as if this was it. I could look at my calendar and know that on Tuesday (today) I would be presenting twice, but on Saturday I could not see this.

That presentation in Joplin went well and I was on top of my game. The questions that were asked in the Q & A segment at the end echoed the continuing need for awareness and understanding in the education system and medical professionals.

On the drive home I got really sad. Finally, after ten days, I was processing the stories I had heard and the impact I might be having. On one night a parent stopped me at a gas station and stated that she, "Liked my presentation from last year". This blew me away as someone remembered me from 10 months ago! Yet, this event was overshadowed by all the stories I heard from parents.

Another thing that was on my mind was the Supercross race that was being held in Saint Louis that night. I had been to so many in a row, but I didn't buy a ticket for the event as I didn't know what time I would be getting back home. I kept the thought alive that I might drive in and buy a ticket the night of the event, but as I neared Saint Louis and utter exhaustion set in I knew that if I went to event I might very well fall asleep at the event. Because of this I skipped the event which wasn't as bad as the anticipation of missing the event.

The drive home though was a time of deep emotion. I couldn't believe that it had been 10 days. The entire trip seemed like a few minutes and as I pulled into Lion's Choice in Sullivan I was astounded that it had been 10 days. It didn't seem like it at all and now here it was, 10 days later and my trip was now to home.

Looking back I don't think there will be one event that stands out as the whole journey will live with me forever. From the roads to and from Piedmont, to the Special Stage Route N on my way to Nevada, to the countless stories I have heard from parents, to the many thank you's I heard all of it will be with me. I didn't think it was possible, but as I was driving home I got hungrier to do what I am doing. Yesterday I felt as if time was wasting away as I didn't have a soul to talk to about the autism spectrum. Today, however, I have two and tomorrow I once again talk to police officers. Time isn't wasting and while a few days ago I thought my presenting life was over, but today I once again will step up, stand in front of a crowd, and begin with, "My name is Aaron Likens and I serve as Community Education Specialist for TouchPoint Autism Services..."

Monday, April 11, 2011

A Day of Rest

This is weird! After 11 days of being away I woke up in my own bed. The past two weeks or so have flown by and on my drive home from Joplin I couldn't believe at the blur that has been the past two weeks.

After being on the go for so long and doing so many presentations I feel as if I just finished a marathon of sorts. A total of over 1,500 miles were driven and 10 or so presentations were given. A single presentation alone will tire me out let alone a marathon like this.

I may be tired today, and taking it easy, but my focus is already on the next marathon. Tomorrow I have a presentation to parents going through TouchPoint's parent training and tomorrow night I have a presentation that is open to the public (address and info on my "upcoming presentations" page that can be found on the right bar). On Wednesday I will give my police presentation to City of Saint Louis officers going through CIT training and then the traveling recommences on Thursday with a presentation in Jefferson City followed up by the Thompson Center on Friday and then Brookfield and Kirksville on Saturday

Today may not be the most exciting of days, but it is highly needed. A day to take a breath, to regain lost energy, and to prepare (such as an oil change!) for the next leg of this tour of Missouri of Autism Awareness Month is something that I am glad I have. I better enjoy it though as the race to raise awareness starts again tomorrow.

Friday, April 8, 2011

Thoughts Traveling Down Special Stage Route N

Yesterday I drove from West Plains to Nevada (the town's name is pronounced Ne-vay-da). Getting there, as usual, was entrusted to my always quirky, never right, GPS system.

Things started off good as it led me to US Hwy 60. Eventually I made it through Springfield and got on Route 13. Later on I turned onto Missouri Route N and this is when the fun started.

At first the road had nothing on the road I mentioned a few days ago by Piedmont. This road was actually enjoyable with gradual banked turns, some sweeping bends, and some steep hills. While this was like Piedmont's Route 34, there was plenty of run off and no trees right off the road.

As I was within an hour from Nevada I saw an ominous sign, "Route N closed 4 miles ahead for bridge replacement". That's fine, I thought, because there's always a detour sign, right?

Four miles turned into three, turned into two, and I made it to the end where the barricades were. In the four miles there was no alternate route offered. I looked at my GPS and made the choice to choose the road to my right. Thus began the true special stage.

In rally racing the race is broken up into stages called special stages. After a quarter of a mile I was sure I was partaking in a rally as I think you'll agree after seeing this picture:


This photo is only a small section of the twentysomething miles I did on this road. For one reason or another on this road I was deep in thought and became completely at peace.

At first I was worried about my new car, but then I quickly became thankful that it is all wheel drive. After that I marveled in my isolation. I saw no cars and no people the entire time on this road. I thought back to a couple years ago and the fact that I never would have gone down a road like this, but on this day I had to be in Nevada to do a presentation. Excessive backtracking wasn't an option and like it or not I was going to have to risk my car to get there in time.

The hills came, and the turns became sharper. I yearned for a handbrake so I could pull off an impressive slide, but it was probably a good thing I don't have one. As I rounded a long downhill turn it hit me that I have never been happier. My journey for Autism Awareness Month began eight days ago and I have traveled over 1,100 miles and gave so many presentations that I can recall at this point in time, but just look at my Missouri map on the lower right hand side! All the light blue, plus the gold in Laclede, have been on this trip. How awesome is that? On top of all that I still can't believe people come to hear me speak. Two years ago I only spoke over Xbox Live and at the racetrack and now I talk nonstop for almost two hours.

This road was a great example of how my life has turned out. I was sure I was going to race cars much like I was sure I was going to take route N all the way to wherever I needed to go, but there was a bridge out and a road that didn't look all that attractive was taken. Along the way there were bumps, hills, valleys, and lots of rocks. And yet, this road did take me to where I needed to go and while it took more time than I imagined, I made it having a great story to talk about.

With each presentation I grow more passionate about what I am doing. There have been times that exhaustion has started to set in, but then I fight it off because this message has got to be heard. I have to be on at every presentation because I have no clue how much of an impact the people that hear my presentation will have on people that they know.

There is hope in understanding and I want to do my best in getting people to understand. There are so many people in need to hear this and I keep hearing in these presentations that parents wish schools would hear my presentation. I hope in the future this can happen.

Yesterday is a day I am going to remember forever. Driving down that dirt road I had so many thoughts and over and over I realized that I wouldn't have wanted to be anywhere else and I wouldn't want to be anyone else as I am fully happy with all the gifts and challenges I have.

Thursday, April 7, 2011

Trying New Things and Aaron vs. The Light

Yesterday saw two events worth writing about so it's a 2 for 1 deal on today's blog!

First off, for lunch yesterday, I went to Huddle House. This within itself is very relevant because I never saw myself going to a Huddle House. I have always been more of a Waffle House kind of guy and I have a friend who has a Xbox Gamertag of Waffle House who has said that one must claim allegiance to one or the other. Seeing that there were no Waffle Houses within walking distance of the hotel I still maintain that I broke no allegiance.

Anyway, restaurant allegiances aside, I walked in with an odd inkling; I wanted to try something new. This happens very rarely and as of late only seems to happen when I am away from home. Why is this? The answer would probably be too long for this post, but perhaps in the future I will write about it more.

So I went in wanting something new, but what to get? On top of this would I order breakfast or lunch? In my presentations I joke that I laugh at people who go into a place and not know what they are going to get, but for once I was on that side of the fence.

Because I didn't know what I was going to get I didn't know what I was going to drink. You see, if I got something breakfasty I'd have milk, and if I got something lunchy I'd get a soda. The waitresses were getting annoyed because I got asked, "Has someone got you a drink yet?" at least a dozen times and each time I mumbled something along the lines of the fact that I needed more time. They did not like this.

Eventually I settled for a Philly cheese steak sandwich. This is something I would almost never consider because it had green peppers and onions in it. For some reason though my usual loathing of this type of food wasn't there. Was it good? I don't know; I did eat it all though and didn't dislike it.

Walking out of Huddle House I felt proud of myself. It isn't very often I try something new, and while this may seem like an irrelevant event in a person's life, for me it was a major event. I try something new maybe once every nine months, and in the past month I have tried Mexican and now a Philly cheese steak sandwich.

One quick note on my deciding to try something new. On all occasions in recent memory I have tried something new when I wanted to. It has been up to me to try something new and as a child anytime I was simply forced into something new I disliked it before I tried it, if I tried it at all. I can remember eating just a few things as a child and when forced to try something I did not and yet, when my parents ate something and I could see it, and smell it, I grew curious. When I was ready I would ask, very silently as if asking for something new was conceding a defeat in a way, for a taste.

Aaron vs. The Light

Last evening I had my presentation and as soon as I walked into the room where the presentation was I saw a problem. This problem is something I have battled for many times and often times fixing the problem is much like flipping a light switch, well, that is actually the cure to this problem as the problem was a flickering fluorescent light.

I thought I would just ignore it so I set up my laptop and projector and got my PowerPoint up on the screen, but the light continued to flicker down rays of agony. It was still 30 minutes until the start so I thought I could power through it, much like I did with my headache yesterday.

As much as I tried powering through was getting me nowhere. All my attention was in tune with the disharmony of that light. Others were talking in the room and I was just transfixed on the light. I tried to look away, but I could still see the light on the ground and it was like an elaborate light show gone wrong with no order and pure chaos.

Try as I might I could no tune it out. I was worried because I did not know the solution to my problem. Well, I knew the solution but I didn't know how to carry it out. I will use my very amateurish MS Paint artwork to illustrate the room:



 The blue items are the table and screen, the green items are the tables, and the yellow and orange items represent the rows of light with the red light being the light from, well, input your own line here.

The three light switches operated each row. Only the middle bank of lights were on so, with about 10 minutes to go before the start, I slowly made my way to the light switches. Now, when I say slowly, I mean it as I was trying to look as nonchalantly as possible. As much as this was driving me up a wall I didn't want anyone to know. Even though my presentations sometimes have stories of when I needed help and I didn't ask for it I still suffer from this. My struggle was in silence and I was going to do everything I could to avoid asking for help.

After a couple minutes I made it to the light switches, but then I realized a new problem. If I am the one to throw the switch then someone, or everyone, will know I was the one who did it. I stood at those switches for a couple minutes trying to look as if everything was normal, but that was probably hard as I kept looking at the switches and the light which was still emitting chaos.

With three minutes to go until I was scheduled to begin I walked to the kitchen area, which would have been in the center of the bottom wall of my artwork of the room, and I kept trying to get the other TouchPoint staff's attention. I wanted to make this a quiet as possible as here I am, a presenter, having an issue over a flickering light. Yes, I know this reason is one of the reasons the world needs presenters like myself, but in the moment I feel sort of out of place. Like, since I am a presenter I shouldn't have an issue with something that others might not have noticed, and yet having to endure that light for almost half an hour had made me drowsy and wanting to go to sleep.

Having that constant input from that light made me feel as if I had just worked a 12 hour raceday in the middle of July with 100 degree heat. Finally I got the attention of the staff and I said, "That light has got to go!" and she walked over and turned the middle bank off and turned on the lights on the top row of my artwork. To my surprise no one was angry that this change had been made (one of my worries as to why I didn't do it myself) and thankfully the room now was much more friendly to my senses and I was able to carry on with my presentation as if no crisis had taken place.

This example will find its way into my presentations I'm sure as it is a prime example of, well, for one the potential sensory issues a person may have, but secondly the inability for self-advocacy. Had I not got the switch to be made my presentation would have been unusually choppy and much more disconnected than usual. The distraction factor would have been high and I would not have been able to say why, except maybe on here the next day.  I do know I could have instantly ended this problem, but even though I am aware of the problem finding the solution is difficult, even more so when I have to state that there is a problem or ask for help. I'm glad I did eventually state that, "the light has got to go" but so many times in my life I was not able to do this. What makes matters worse is that I then had to endure the problem I couldn't fix and then feel bad about myself afterwards because my performance in whatever I was doing was hindered because of the sensory distraction. Truly we get hit twice in a matter like this and it is something I hope, after reading this, I have explained and you have a better understanding of it now because you may never know when an issue like this arises, but if you look around the environment you may find what is causing the problem when we are going to be unable to tell you.

Wednesday, April 6, 2011

The Adventure To and From Piedmont and the Presentation in the Middle

Yesterday I had a presentation in Piedmont. Piedmont is about 50 miles north of where I was in Poplar Bluff. While the overall mileage may not seem impressive the road there certainly got my attention.

The road I got on was Missouri Rote 34 but I still believe it should be called roller coaster 34. This road has twists, turns, and has the feel that it should be in a video game and not the open road. On top of all this the speed limit is 55 and at one point in time I had a school bus behind me and I was doing 55 and it was tailgating me and I fully expected a bump draft to come.

After many miles of holding my breath I made it to Piedmont and I entrusted my GPS to guide me to where I needed to go. If you have read this a long time, or have talked to me at any point in time, then you will know that any time I mention the GPS it isn't to praise it. Yes, once again the GPS had no idea where this church was so I decided to turn around and eat at the Subway a mile back.

After dinner I got back in my car and had an idea. I looked at the "Upcoming Presentations" page from this blog that I had printed out and read that this church was between Piedmont and the other town. I got in my car and just started driving in that direction hoping that I'd find it. After several miles there it was.

From being lost and taking the time to eat I was only 10 minutes early. At this point in time, as I got out of my car, a tremendous headache hit me. It was so severe that standing up was difficult and any movement of my eyes created more pain. I was worried that my presentation would suffer so I sat in the hall away from the room where I was going to present, as there were people in there, and hoped that quiet would help. It did not.

I have never presented in any pain except for the lack of having a full voice after last year's USAC Silver Crown Race at the Indiana State Fairgrounds last May. Would I still have the same energy? The same humor? Would I be able to last 90 minutes? I was very worried.

As soon as I was introduced the pain disappeared. Where did it go? I don't know, and don't care to know as the only thing that mattered was that I was on my game. This actually used to happen to me when I raced karts as I could be sick, but as soon as I was in the kart and the race was starting the pain just vanished.

After the presentation I now had to drive 109 miles to West Plains. As exciting, and scary, as Route 34 was in the daytime it was 10x that at night time. To be perfectly honest I was more scared than I had been in a long time. What was I scared of? It had nothing to do with my ability as I would love to take a WRC prepared car on that road at full speed. However, if that were to happen the road would be closed for a rally stage and it would be safer. What I was concerned about was the oncoming traffic at those high rate of speeds that I feel is common on that road (the limit is 55, but if one does 55 they will be going much slower than most cars). Also, driving on a road like this at night brought back many memories of hitting the horse that I did three years back.

After a couple miles of this roller coaster I pulled off onto the scenic overlook. I did this for two reasons; for one the view was amazing, but secondly, and more importantly, I stopped to catch my breath. I kept having visions of horses, cows, and deer all having a party in the road as I would round a corner. I didn't have this in the daytime, but in the light animals are easy to see, but at night even my high beams did little to break the sheer darkness of the night time.

I watched the miles click down on the GPS. 18, 17, 16 15 and eventually I got to 9.9. Between times of fear of deer, and seeing them (I saw three) I was enjoying this road. Traffic, thank goodness, was very light and I only saw one other car the entire way on 34. Eventually I made it out of the roller coaster road and made it to US Highway 60.

Even on 60 the traffic was sparse except for a patrol car or the occasional truck. The sky was amazing though as the stars were so clear in the night sky. I took a minute to pull over and just marvel at the amount of stars that could be seen.

Today I will have another presentation and tomorrow I will head to Joplin. Thankfully today I will have no roads to drive on like that roller coaster of a ride known as Missouri Route 34.

Tuesday, April 5, 2011

Life On the Road

It's only been five days since I left Saint Louis and I find that hard to believe. It was just five days ago that I headed from Saint Louis to Lebanon and had a presentation at the library. Five days?

The past five days feel like a lifetime and I don't mean that in a bad way at all. It's just that being on the road like this I have lost my routines and schedule. Yesterday was Monday and I had no clue. Again, this isn't a bad thing or a good thing, it's just a, well, thing.

Anyway, I have given 7 presentations so far and the first one in Lebanon seems like a lifetime ago. I have met so many people and have heard so many stories that I know what I am doing is a cause well worth every second of my journey.

I often get asked in my presentations if I, "live alone" and while I say "no" I comment that I think I could do it as right now I am living in hotels and finding places to eat by myself. In fact, this on the road life isn't so bad. Granted I am growing tired of fast food, but there is a since of freedom that I can't fully explain. Maybe this feeling comes from the fact that I know people are listening to what I have to say and with each town visited my words are being heard.

The #1 thing that I have learned on this tour so far is that the need for world understanding on autism can't be stressed enough. Since you are reading this I'm sure you already know this, but I'll state in anyway that every doctor and every school system needs to not only be aware of the spectrum, but they need to understand it. How long will it take to bridge this gap of awareness to understanding? I'm not sure, but the more voices that are out there the faster it will be I hope. In any case it is this need that keeps me going down the road, mile after mile, giving my stories and experience, hoping that one day I can give a presentation about, "The days of when the spectrum wasn't understood." Someday!

Monday, April 4, 2011

Drama on the 7th hole

It has been an amazing time giving presentations in just the first few days of Autism Awareness Month. My focus today shifts from the Southwest part of Missouri to the Southeast.

My confidence in presenting is still increasing and I have noticed that I am doing something I rarely do and that is smiling. All this smiling and all this confidence though does not replace having Asperger Syndrome and I had an experience yesterday that is a good reminder of the challenges.

Yesterday I had a day off from presenting so I took time to go play golf. First, if you ask if I have any skill, this picture of me is a good example of where I play  a lot.

I was having a decent time yesterday and was shooting nicely when I got to the 7th hole. My drive ended up in the sand of all places, but while driving to my ball the golf cart sputtered, slowed, and eventually came to a stop.

At this time I thought this was just something that could be solved by using the "choke" button. I have no clue what this magical thing does, but this time it wasn't so magical and the golf cart's engine was just barely making any noise. After a minute of trying this I came to the conclusion that I was out of fuel.

What to do? I looked around and weighed my options. A group had let me play through two holes earlier so I decided to wait for them, but after a minute of thinking I became very anxious about what I would tell them. I mean, I was parked near the sand trap a good 200+ yards away from the tee box. I could wave them to hit the ball, but then, well, I'd have to say something to them. What would I say, "Hey, I'm out of fuel, can I play with you?" While that may be the easiest and most straight-forward thing to do it would require me to talk to people I don't know.

Here's the classic situation. In a presentation I can speak for two hours or more and words are easy. And yet, as easy as that is, I can't simply tell three people that I need a little help getting to the next few holes.

Okay, so waiting for golfers to come to my aid was out. My next solution was to simply play the game as it was meant to be played and that was to walk. I could catch the club house in three holes and get a replacement, but of course this meant I'd have to explain that I left my golf cart, abandoned, three holes back. Do I leave the key in? Do I bring it with me? Oh, the choices!

I decided to bring the key with me and I walked towards my ball in the sand. While walking I experienced a yard sale of golf clubs. What I mean by that is my golf bag is not good and my clubs like to fall out. It was bought for less than 10 dollars when I was 15 and I don't think I could give the thing away in clear conscience.

If I were to continue on walking I would be picking up golf clubs every five steps. This did not sound like fun so I went back to my stationary golf cart. Ten minutes have now passed and I am starting to get very angry because I convinced myself I was not going to join up with the people I don't know.

As I saw the golfers that I had passed earlier reach the green on the previous hole I had to think of a solution, then it hit me. I could call the clubhouse and state the situation. "Uh oh!" I said aloud as I looked at my phone. Using my phone is something I don't do often except to call family. On top of that I didn't know the number of the club house. After several seconds of debating whether to text someone to look it up I decided to look on the scorecard and there it was, or so I thought.

I was in such a panic that I dialed the first number I found and it rang... and it rang... and it rang. No answer. Then I saw that I had called a contractor. Then I dialed the next number I saw and it was a bank. Was the number I needed on this scorecard? If I wasn't in such an anxious state I would have found it much quicker, but anytime I am anxious about something, and even more so when it is something that deals with social aspects, I usually will miss the obvious. In this case the obvious was the front page of the scorecard with the phone number in the biggest font on the sheet.

Now that I found the number after a couple of errors I hesitated. I wanted to walk again as having so much time to think about the phone now made the phone a very scary prospect. I then looked at my golf bag as motivation and I called the number.

Within five minutes the replacement cart was being driven and I got out just in time to avoid having to explain the situation to the golfers that had just about caught up to me.

I am not another person, but I think someone else would have handled this much differently and probably much more efficiently. Perhaps it would have simply been an inconvenience instead of something that became an adrenaline inducing drama.

Today I will be back in front of a group of people explaining my experiences on the spectrum and I will be talking with ease. These moments I cherish like nothing else because there are times, be it in a supermarket, of the 7th fairway, that words and actions will be much harder.

Saturday, April 2, 2011

Autism Awareness Day and The Enemy

Last year I wrote how raising awareness and understanding about the autism spectrum became my passion. With each presentation and blog post my passion continues to get bigger. There was an event last month though that made the need real to me. I have talked in the past about stories of doctors or other professionals who don’t know anything about the spectrum nor were they willing to learn but had never met one of these types until last month and I realized what the enemy is.


Who or what is the enemy? I met this entity while doing a lunch and learn with Matt. I look forward to each and every one of these because I feel it is such important work. So far in these lunches doctors are truly interested in TouchPoint and learning about my experiences on the autism spectrum. The feeling of accomplishment I feel from these can’t be put into words, but I will put into words what it is like to meet the enemy as one this day last month I finally met one of those doctors I have written about.

Who is “one of those doctors”? Many times since the beginning of my blog I have written about the horror stories I have heard be it a doctor telling a family to wait a couple years and reassessing then to see if it is autism, or the doctor who threw a ball at the child and if the child could catch it then, well, it couldn’t possibly be autism.

We waited in this doctor’s office for quite some time and finally the doctor came in. The conversation was brisk as the doctor obviously wanted to be elsewhere. He was holding a new sleeve of Strata golf balls and a new tool, perhaps the tool that one uses to repair green damage, but while Matt was talking the doctor was reading the fine print on the package of golf balls. When pressed on if he knew what the MCHAT is the doctor looked at Matt and said, plainly I might add, “no.”

Once Matt showed him an example of one and the questions that are on it the doctor once again slipped back into golf mode. I found this odd as the temperature was 38 degrees and the skies were about as gloomy as they could be; I guess this was fitting for the mood in this doctor’s office.

Matt then asked, “If you suspect autism what do you do?” and the doctor stated that he refers them to place X (I am not in the business of naming places or names in events like this as it is not productive. Even if you find me and press me for names I will not give it as I don’t think it would be proper) and Matt responded respectfully, “That place doesn’t do autism”. Matt immediately followed up with, “After that what would you do?”

The following answers will live with me forever. The doctor who showed no emotion except fondness for his new golf balls said, “Well then I will refer them to a developmental pediatrician.” That sounds great, right? Matt then asked the distracted doctor, “Who?” and the doctor’s response? He stated, “I tell them to look at a phonebook for a name.”

The phonebook!? It was clear to me now that this doctor would not recognize autism if it were right in front of him. The signs would be lost and furthermore he, if he could figure it out, would not know what to do if he did.

This enemy is a dangerous thing. I never realized it existed and what I mean by that is that it is sort of thing that I have heard, but people truly can’t be that ignorant, right? Yet here I was in this doctor’s office witnessing it firsthand.

Ignorance of the autism spectrum by a person, say, a stranger on the street isn’t all that dangerous of a thing. What is dangerous is the fact that there are doctors, people who have made it a career to make people better and to point people in the right direction when they don’t know what to do, that don’t know a thing about autism. The latest statistics, and I know I am probably preaching to the choir here, is that about 1 in 100 births are going to be on the autism spectrum. That is more prevalent than pediatric cancer, diabetes, and AIDS combined! With that being so, and I have said it so many times, there is NO EXCUSE for doctors to be blind the growing number. In 1997 the numbers were about 1 in 500 so the rate of growth is staggering. But this raises the question, how high will the numbers get? We are about 1% of the population, but maybe in 10 years it will be at 1.5% or maybe 2%. Will doctors still be blind then? With so much hope out there, so long as families are made aware of it, can society afford to continue to have doctors oblivious to the growing numbers of autism?

I said with each day my passion grows and I have relived that experience in that office each day since. Most of the time doctors are highly receptive to information about autism, but on that day the enemy was made real. I saw it, I felt it, and it saddened me. Today is World Autism Awareness Day and I hope someday we can conquer this enemy. This enemy isn’t that doctor though but a plague that is out there. There isn’t one person that is the enemy as the enemy is ignorance. This month and this day may be the one time of year that autism awareness is in the forefront, but for me each day is a battle against this enemy as there is hope, but so long as professionals don’t fall prey to the enemy.

Friday, April 1, 2011

Autism Awareness Month


Doing the "Blue"

It's that time of year again for Autism Awareness Month. Autism will be in the news, prominent buildings across America will be, "Lighting it up blue," and I'm sure there will be plenty of news stories about autism.

How am I going to be "Lighting it up blue?"  As Community Education Specialist for TouchPoint Autism Services, I will be traveling the state of Missouri to educate families, professionals, doctors, and educators to not only be aware of Autism, but to UNDERSTAND it.

I use a map to indicate the counties where I am taking the message of understanding.  Each month is indicated by a different color.  For the month of April I have chosen blue: "Lighting it up blue." I will be in 15 different counties, making 19 presentations.

Last year I posted how raising awareness became my passion. The mission has not changed within a year and if anything my passion has grown more intense than ever.

April is the month to bridge the gap between awareness to understanding the gifts and challenges those on the spectrum face. 

Last year when I wrote that blog entry I was still new to this and new to speaking. In the year since, I have no doubt that the need for awareness and understanding is far greater than we can imagine. What I mean by that is the current rates of autism are near 1 in 100! We can throw stats around all day long and the result is that a number minimizes the human impact. When I quote numbers I often forget that each 1 in 100 is a person that has autism. If I forget about it what does the rest of society do?

What am I getting at? Stats are sterile. Statistics might raise awareness, but my mission is to raise understanding. With my writing and presentations I try my best to make the autism spectrum into a vivid picture that one can see and feel. 

Don't misunderstand me; the numbers of the incidence rates of autism are scary. Here in Missouri the rates are actually a total of 1 in 83 and for boys it is 1 in 52! But again, those numbers do not show the impact. For each case of autism many more people are brought into the realm of the spectrum. There are the parents, the siblings, the grandparents, the doctors, and the teachers that will be introduced to the autism spectrum. Because of this awareness itself is not enough. Society as a whole, whether it wants to or not, will eventually have to know more about the autism spectrum than it does now because our numbers are increasing.

If you are reading this you probably already have a better than average understanding of the autism spectrum. Think of your friends though: what is their level of knowledge? Extended family? All too often the autism spectrum is kept as a secret in a way. In my presentations I often hear parents say that the child's uncles and aunts have no idea what autism is and simply say, "Why are you spoiling your child?" This is where autism understanding is needed. 

This is the month to share your story with extended family and friends. This is the month that autism should not be lost in the numbers but made real. Each person with autism is unique and I have preached many times that, "If you've met one person with autism, you've only met one person with autism" and this is the month to celebrate that! 

I feel the world, for the most part, is listening. Of course there are some people that will never listen (that story tomorrow) but if we don't speak up how will the world ever know who we are? If we don't speak up how can we expect to be understood? Of all the months to speak this is the month. We are a long ways from total understanding, but with this month we can continue the journey that is autism awareness and autism understanding.