Wednesday, February 8, 2017

Discovering Courage and What Inspire Me


Last week I had my 850th presentation for Easterseals Midwest in Troy, Missouri and I thought I had seen it all and done it all but it wasn’t until after the presentation that I was wrong about seeing it all and through it I found true inspiration.

Inspiration is a tricky thing to define and I’ve been asked what inspires me many times to which I usually give an answer that goes nowhere. At the end of my presentation, however, a young gentleman came up to me and he bought one of my books and left. A few minutes went by and he came back and that’s when it happened.

In my life the hardest thing to do is to talk about my difficulties. Sure, I can do it in a presentation but out in public off the stage I can’t do it but this gentleman came up to me, composed, and started talking about his difficulties in life and in particular the difficulties with processing delays and what he can do and say about it. I tensed up at this point because I knew my answer had a lot of weight on it. It’s easy to stand up on a stage or in front of a room for me but when a direct question like this is asked I know the great level of courage it took to ask it and I know my answer will be remembered for a long time.

My answer began with the fact autism awareness is increasing. I mentioned that even just a decade ago few would’ve even had the foggiest notion about what advocating about a processing delay would ever mean, but it just so happened two days prior in Marceline, Missouri a fifth grader asked a rather articulate question with, “What does it mean if a person has a processing delay and what can I do to help someone that has it?” In telling this story to the gentleman that was now in front of me I knew I had to expand on this and give him the power and that’s when his true courage and the power of the moment hit me.

I was about to cry. I’ve thought I’ve been courageous in my journey and many will attest to that, but this man in front of me asking such a personal question and asking it in a way in a sense of shame is the foundation for changing this world! And I told him this by saying, “One thing you can do is to open up if you need more time. It’s okay! Will everyone give you the time you need? No, and that’s okay because many will and if someone asks you why you need it and if you can keep the courage you have right now you, yourself, are the autism ambassador and you can change the world!”

That answer… I didn’t really know where it came from but outside the conversation bubble of him and myself all were in tears and this reinforced my belief that it is that type of courage that we all need. I think back to a few years after my diagnosis in the 2000’s when I had a chance to meet Temple Grandin and I said something short of five words. I was incapable of talking about my difficulties because I was too afraid of them. Could I have said anything about challenges? Most certainly not and that’s why I can now answer the question as to what inspires me. It wasn’t some major celebrity, it isn’t a gigantic entity, but rather one person at a small presentation in Troy, Missouri that stood up, took a leap and spoke up.

Tuesday, January 10, 2017

Living in the "What If" World


            I spend a lot of time thinking; too much probably. It’s something I can’t turn off and the thoughts sometimes are extremely random. Being able to think in video makes it all the more difficult.

            But shouldn’t being able to see in video picture a good thing? Ha! It would be if it could be switched on and off, but it can’t and it is very tiresome. Everywhere I go I’m playing out situations. Every flight I’m on I’m thinking about what will happen if the left wing hits the ground, the right wing, or if an engine stalls. I play out potential for survival, the amount of pain I might feel, and anything in between that could happen. It’s a flood of thoughts. Yes, I’m sure those that are afraid to fly have similar thoughts as the plane starts its journey down the runway, but I’m not afraid to fly.

            If I walk into a store I subconsciously note where the exits are in case of a fireman or gunman in the store. The thoughts start to the extreme and work backwards. Consider this a sort of self predicting mechanism. If I can think of every possibility I will already know my contingency plan.

            Having a plan for everything sounds great too, doesn’t it. Again, I say “Ha!” as there is no way one can prepare for everything. Also, my mind puts so many resources into thinking about what lies ahead that often times I miss the now. Once I miss the now I have to consider what I missed and then I have to fill in some blanks, and there could be many blanks, and I must consider each blank and by the time all is said and done it’s one week later.

            During the 2004 Summer Olympics I asked my dad, during dinner, “What would happen if someone attacked the marathon leader? Would they give him a medal? Would the race be stopped? Could it happen? What would happen to the attacker?” I have no idea how my dad has put up with these lines of questions because I’ve done this my entire life.

            After dinner, while watching the marathon, my “what if” scenario became a reality. A defrocked Irish priest, who in 2003 disrupted the F1 race at Silverstone by getting onto the track and getting in the cars’ way, broke out of the crowd and tackled the marathon leader, Vanderlei de Lima of Brazil. Shaken and shocked the runner forged on afterwards in an event that cost him nearly 20 seconds. I’m not sure about you, but if someone jumped out of nowhere and tackled me I’d want to find a corner to crawl into and have a crying session. Cry he did not though and he went on to finish 3rd. He may have won gold though, but the organizers did not award him that. They did, in something in my “what if” thinking didn’t realize they could do, award him the Pierre de Coubertin Medal for sportsmanship.

            My dad had adamantly told me during that 2004 dinner that something like that could never happen, but it did. My mind can’t turn this off, and in all aspects of like I typically like to be right, but not when my mind calculates these negative situations.

            These situations can be big, or small. Every conversation I have gets played out during the conversation. Think about the fear I have as I always start with the extreme. The extreme would be that I am going to make them bad and I’m going to be punched in the face, or worse.

            I wonder if other people with an autism spectrum disorder experience this. I think this could be mistaken as an anxiety disorder because it does create anxiety, but only from what could be. Rarely am I afraid of what is, but because I am so bad at knowing what the current social situations are I must prepare and predict for myself.

            I am wrong more often than I’m right because most of the time, well, nearly all of the time my mind doesn’t get to the normal outcome that is most often the case. Anytime I hear “Breaking News” on the television I instantly play out what it could be from the time I hear those two frightening words to when they actually say what it is. I will think “Nuclear war? Hoover Dam collapsed? Terrorist attack? Terrorist attack in Omaha? Duluth? New York? Fiji? Is a comet about to hit the Earth? Asteroid? Was there an earthquake? Tsunami? Zombies? Did the markets collapse?” I remind you I have all these flashes of thoughts in just a split second. I’m often disappointed I went through all the trouble, but often relieved when I find out that their concept of breaking news is a celebrity in trouble with the law.

            I hope I have conveyed just how tiresome it is living in the world of “what if…” There is no off switch and I can see, like a movie, all the events that I said when I hear breaking news. Sadly though, unlike a scary movie, I can’t simply close my eyes and make it go away. In my case, when I close my eyes, I can actually see the “what if…” even clearer. Let me say this again, thank goodness I’m wrong most the time because if I were right, those comets, or zombies would’ve wreaked havoc on us more times than anyone would care to think about.

            If my mind had a movie preview it’d be this, “In a world where tsunami surfing zombies carrying live nuclear warheads…” Wow, what if that’s the oddest thing I’ve ever played out…

Thursday, January 5, 2017

Wednesday, January 4, 2017

Where It All Began


               Seven years ago today I awoke with a mission. I wish I could say it was a noble mission of starting a career as a public speaker, but it wasn’t. My mission was one of self-preservation because I, quite simply, didn’t want to make a complete fool in front of 40 police officers at the Saint Louis County Police Academy because I was about to give my first presentation for Easterseals Midwest and I had never presented to police officers before and I had no idea what I could say that they would get.

                My presentation that day was at 1PM and I awoke around 11:30 as back then I had no direction and no real purpose to get up so it was odd to get up and have somewhere to be. Was I nervous? Words can’t relay the feeling of dread I had as I left the house and inched towards the academy. What was I going to say? I had 50 minutes and I had an odd hodge-podge PowerPoint formulated which was, well, I don’t fully remember it because I only used it that first time and as I presented it I was cringing on the inside because I knew I was going down in the most glorious of flames.

                It was bad, or so I thought. There was no fluidity in my words and no real message. I tried to sound like I knew what I was talking about and while I was sure I failed when my time was up I was confused because the officers there applauded and not in the polite way one does at the end of any given presentation but this was a genuine round of applause as if what I had just done was something out of the ordinary.

                On my drive home I had many thoughts of how to make it better because I knew my material I had presented, whilst good, wasn’t what officers in the field needed to know. I didn’t know that in my audience that day were many high ranking officers including the then head of the Saint Louis C.I.T. program that would have me present to this day, and that impressing them was a feat to be proud of. This didn’t register because I had been so nervous and now I was so focused on needing to make my presentation more relevant.

                E-mails were sent and I got a coworkers presentation and to this day I’m still using the same presentation. Much has change despite the PowerPoint remaining mainly the same (one major change; rate of autism has gone from 1 in 155 to 1 in 68) as the stories I use have become more complex. Also, after doing a police ride-along in March of 2010 I got a better understanding of what an officer faces and I changed my usage of words. Maybe it’s this understanding which has led to the continual great responses I’ve had and as the years have gone on my passion has not waned one bit. If anything my dedication to the field of law enforcement has increased as I’ve received the honor of presenting to three FBI field offices and last month I received the thrill of my career when I got invited to a conference that the FBI had.

                While it was like playing in the Super Bowl or World Series last month at that conference every presentation to law enforcement at any level is important and each presentation can have ramifications that you and I will never know what the impact may be. If it were up to me I’d present to every officer possible because it’s something that can’t be put off or ignored as the rates of autism keep going up. It isn’t a matter of if an officer is going to have an encounter on the job with a person with autism but when. Statistics show that the vast majority will be because the person on the spectrum will be a victim, but if an officer isn’t aware of the traits, or the potential taking of things literally, the way the encounter goes may not be the best, or in certain situations the end result may be a story that ends up on the news in a tragic manner. I’m not saying my presentation or any other person’s presentation about autism may prevent a perfect storm from forming it is something that needs to happen.

                The overall reception I’ve had from officers has been nonstop since the first one and I don’t take any police presentation for granted. I was oblivious seven years ago on what I was getting myself into and had no idea how much rides on being on my game each and every time. Actually, I never thought that officers needed training in the first place, but seven years later I now know the need for trainings throughout America and the world is growing faster and faster and I will forever be thankful for how aggressive the Saint Louis area has been at getting their officers trained. I can only hope that seven years from now we have made more progress than we can imagine because, well, we already have in the past seven.

Tuesday, January 3, 2017

The Changing of the Year


                Like many across America on December 31st I was watching the coverage from Times Square and the dropping of the ball and as with each year previous I tried to stave off emotions and as with each year prior I failed.

                I watch the millions of revelers in the streets on television and I am in an awe of sorts as there’s so much excitement and passion which I don’t understand. The last thing I try to do in life is acknowledge time. Time represents change and change is bad therefore New Year’s Eve is the ultimate day for acknowledging the passage of time.

                For many 2016 was a year to forget but the thing for me is that it will NEVER be 2016 again the same way it will never be 2015, 14, or 1999 again. Things that have a certain finality make me cringe and each day, each moment is one that will never happen again and this is hard for me to accept. If things could just stay the same in this moment I wouldn’t have to process, things wouldn’t change, and within that comes safety. Of course, what I just said, is outright impossible but that’s the way my brain wants it.

                This sadness with time is where my associative memory system is based out of. If I remember certain numbers, words, and if I have the right physical items around me then, for me, it’s like everything is right now and change never happened.

                The previous paragraph is much deeper than I think you can understand and is deeper than any words I could write could give justice. This is also why it may appear, at least in me because (cue the first time in 2017 I say this) if you’ve met one person with autism you’ve only met one person with autism, I am unemotional when I should be and overly emotional in times when others wouldn’t think I should be. I mean, how many people breakdown in tears because of a changing in the numerical year? I tried to avoid it several nights ago and as the countdown began at 60 seconds and as the partiers in the streets screamed in anticipation and as the confetti began ahead of midnight and as the final countdown began from 10 to 9 to 8 to 7 to 6 to 5 to 4 to 3 to 2 to 1 and to the fireworks I was streaming the tears out. 2016 was over and as the millions in Times Square celebrated I sat bewildered wondering how people celebrate the passage of time. It is something I’ll never understand but as I said in yesterday’s post I am embracing this year and I am embracing this year and I hope this year is fantastic, but whatever may come I know come December 31, 2017 I will once again be staring at a television screen wondering how so many people can be so excited to celebrate the passage of time and another year.

Monday, January 2, 2017

2017... The Race Continues


                2016 proved to be one of the most challenging years I’ve had. It’s odd that the pinnacle moment of my year which was getting the honor and privilege of flagging practice for the Indianapolis 500 was the same moment that my year started to go downhill as that was the day I first felt symptoms of the eventual pneumonia and pleurisy that I’d come down with. From that moment it was one thing after another and my will has a person waffled. Sure, I completed my travel book (I can’t wait until you get the honor of reading the finished product!) but the constant elements in my life and health and close calls I had eroded my will. However, 2017 is upon us and with it a new vigor for the mission.

                This is my eighth year in the role I have as Autism Ambassador for Easterseals Midwest and as the title of this post states it is truly a race. If you know my story you know that I wanted to be a race car driver but that never came to be. That’s more than okay because the race that you, I, and the rest of the world is in is the race for autism awareness and more importantly autism spectrum understanding. Each year I have said that we have made great headway in the awareness aspect but still we are far behind where we need to be on the understanding aspect. This can’t stand! We are in a race. All of us.

                Why do I say race? Each day, somewhere across America, and the world, will be a case of misunderstanding. It may lead to bullying, it may lead to a confrontation, and with a little understanding these cases may not happen or if they were to still the consequences may not be as severe as they may have been. Tomorrow the same thing will happen, and the day thereafter all the way to the end of the year. I don’t want to say there’s a true enemy of autism but if you were to press me for one I would say time is the enemy. With all things autism related sooner equals better and the sooner parents get the diagnosis for their children or employers get educated on what the autism spectrum entails and when teachers are taught that a student with Asperger’s isn’t being belligerent when constantly asking for a logical reason when asking, “why?” we will be inching closer to defeating the enemy of time.

                This isn’t a race that we can lift of the proverbial throttle. We must forge onward and we won’t always be able to travel at Mach 2 to the goal of having everyone in the world being fully aware and able to understand the autism spectrum, but we must strive for it. I believe and know that there is so much human potential in those on the autism spectrum and to have that potential squandered due to misunderstandings is something I hope will slowly subside.

                It’s 2017 and I am embracing this year and I hope this is the year we make our greatest leap forward yet. We are in this together and I wish the best in your endeavors and I will try and continue giving you the best of material possible. Let’s do this year! Let’s change this world for the better!          

Monday, December 26, 2016

2016: The Difficult Year

I typically love writing year end reviews but I don't know what to make of this year. I did things that few will ever get to do so this year should be a great one, right? And yet, there were many events that were just downright dreadful.

I spent last week writing and deleting, writing and deleting, and writing more and deleting it because I don't know what to make of this year. It isn't easy to come up with the numbers of this year. It isn't easy to know how to end this year on my blog.

I'll try and come up with something that gives perspective to this year, but I do know I hope 2017 doesn't have the dilemmas that 2016 saw in my life.

Monday, December 19, 2016

To Go Live

Tomorrow night at 6:30 Mountain time (12:30AM GMT on the 21st) I'm planning on broadcasting my presentation from Gordon, Nebraska on Facebook using Facebook Live. I'll keep it up on my page for a couple days but then it will be taken down. My page is https://www.facebook.com/AutismAmbassador/