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Friday, January 31, 2014

Writing Mode Engaged

I'm excited! No, I'm really excited! In about three weeks I'll be running a "best of my first 1,000 blog posts" series which will run for two weeks which means, essentially, I'll have my first true writing break in four years. However, I won't be taking a break as I finally have thought of something unique that'll make for a good book so during that time I'm going to start on a major project which is writing my 5th book.

Where's my 2nd, 3rd, and 4th book? There safely saved on some computers and hopefully my 2nd book gets published sooner rather than later but since blogging it's been rather difficult to write in book form. My 3rd book uses a lot of blog concepts but I made sure my 4th book was independent which was rather difficult to write a blog post and then turn around keep some sense of continuity for my book.

I finished my 4th book a few weeks before October 2011 so this actually is the longest bit of time I haven't written in book form sense I began my writing journey in February 2005. So yes, needless to say, I am ecstatic about this upcoming "best of" series (and I think for you new readers these posts are going to be great; and for you long time followers these posts should bring back some memories) because, while I won't be stating anything new on here I am a format for my book which should be nothing short of enlightening and magical. I just have to pace myself because a blog is easy as it can be short, or long, but a book is another matter. I don't know how many times I've heard from people that they've started a book but along the way they got frustrated and quit. As I start I'll have a target of between 40,000 and 75,000 words and that, well, that's A LOT OF WORDS! If I see everything at once and think of all the work it'll take it will be overwhelming. That's why I have to look at it one word, paragraph, and chapter at a time and if it turns out great, well, that's great. If it doesn't work out then I guess I'll have some pre-written blog posts, but I feel a writing explosion coming on so it should work out.

Thursday, January 30, 2014

Did I or Did I Not?

Over the course of my blog I've explained several times about sensory issues and the way everything in a room is heard all at once at the same levels. This can make greetings awkward as often times I'm unsure if I heard my name or not, and if so, where it came from. Yesterday this not only happened once, but twice.

The first was at a presentation yesterday morning. I was a little early so I was apprehensive on whether or not to approach the podium where the lady who was putting this on was. Now, it is important to note that when my mind is worried about something, or thinking about something, this whole hearing everything in a room becomes worse. Instead of hearing words it all becomes noise lost within my thoughts which are so loud it drowns everything else out.

Eventually, after trying to look occupied staring at my cell phone, I went in and approached the podium where the lady looked as if she was having computer issues so I stood, silently, awaiting some form of contact. Since I was 100% sure she was the one in charge (she could have been another speaker) I stood waiting for her move. This is a good time to mention my chess concept that I often play as black because in chess white always goes first and there's a big sense of safety reacting to a situation instead of initiating it.

I stood, and I stood, and my brain was now a object reaching terminal velocity in panic wondering what, if anything, I should say. I glanced down for a brief second and then I heard, what I thought, was my name, but where did it come from? I glanced over my left shoulder, then right, and I brushed it off as if I imagined it then the lady right in front of me said hello again and, well, I felt really awful because I missed out on the person directly in front of me saying hello to me but I was so flustered that I missed out on something so obvious.

After my presentation I went to the office and later that afternoon, as I was leaving, I was planning this blog in my head and as I got to the exit I once again thought I heard my name. I looked behind myself to see four people standing and they were sort of looking my way so I could not tell if I actually heard my name or not so I just left. Whether or not that was rude I am unsure because I am unsure if I even heard my name.

This "did I/did I not?" happens more frequently when my brain is thinking or worrying about something or if it is a noisy environment. Then, if I heard something that might have been my name, the whole processing bit kicks it up yet another notch as I try to piece together what I just heard which means I may actually miss my name a second time because I'm so busy trying to figure out if I heard it the first time. And then, obviously, if a conversation is started the awkwardness will remain as I worry on how angry the other person is for my lack of social awareness.

So all this being said, if you know a person on the autism spectrum and you do say hello, or another common greeting, and you don't get a reply it may not be because they are ignoring you but rather it could've been lost to the other noises in the room, or they could be in deep thought about something (like a blog in my case) or maybe they are trying to figure out if they did or did not just hear their name.

Wednesday, January 29, 2014

Youth Leadership Award

I wanted to share today the official press release of the award I'm being presented by the state of Missouri. It can be viewed at http://disability.mo.gov/gcd/pdf/2013_Youth_Leadership_Award_Winner.pdf

Tuesday, January 28, 2014

1 Week of 30 Left

It's that time of year again, the roughest week of the year it seems for me. For those of you that enjoy that time before a birthday, and for that matter the birthday itself, I must say that I don't get it. Yup, I have no idea how one enjoys a birthday.

If you were to go back on my blog I'm sure I've had a post like this in 2011, 2012, and 2013. To some, a birthday is just another day, to others it's an excuse to live it up to the extreme, and to me it's a day to fret, worry, and see just how much change there is.

One might assume that I should have many reasons to celebrate this year because I had a career year, I'm being recognized by the state of Missouri again for what I am doing, I bought a home, I found the most wonderful girlfriend in the world and yet there is no change as to my feelings towards my birthday.

So why is it then that my birthday is so awful? When I was little I loved my birthday, and who doesn't, right? Cake, presents, and a party were the norm but when I turned ten I realized something; my age was never going to be single digits again. Just this little iota of an inkling made me cry for hours on the eve of my 10th birthday and ever since then each year has gotten harder and harder.

The depth of my understanding of time and change has grown since Feb. 3, 1993 when I was about to turn ten but I see birthdays sort of as a mile marker if one were driving down the highway of life. Here's the thing though, and it's a major thing, I don't like change and there is no greater reminder of change than one's birthday. Someday I'll find the perfect way to describe this, but for myself and some others on the autism spectrum our concept of time, or rather the way our brains understand and interpret time seems to be different. Maybe this is because some of us have a videographic memory which makes the passage of time almost nonexistent because all the past seems to be in the now. And if that were the case, everything being in the now, a birthday is a real good way to be kicked out of that mindset.

With every year comes change and some of that change is loss. This, too, is another reason why I am not fond of my birthday because it represents another marker in the fact that life is hard and losses happen. In some things I've written about I've had some power as to the outcome whether it was a tough social situation of trying new foods but with time there is no power. We are helpless to it and try all you want the clock is going to keep on ticking, the Earth is going to keep on spinning, and the days will click off one after another and this fact terrorizes me. And perhaps, in the end, that is what it boils down to; there is no control with time and since time brings about change this means time is bad. So, for those of you that enjoy your birthday I will congratulate you. As for me? I'm going to try and do everything I can to try and forget about this last week I have before 30 changes to 31.

Monday, January 27, 2014

To Forget

There are many things about me that, for others, can sometimes be confusing as to why something could mean so much and one of those things is my inability to accept the fact that something is lost or that something is forgotten. Many times in my life, and I do mean many, I have spent hours on end trying to find something in my house that I know is in it but I'm just not sure where. This, I'm sure, is something everyone does from time to time be it a relic from years past, perhaps a picture, or maybe even a school yearbook. Whatever the case when something is lost one wants it to be found but for myself this, when it happens, takes on a level that most people can't understand.

I've used a line many times in my books and blog and that is, "... the only thing that matters" and while the first half of that sentence may change the part of that something might be on the only thing that matters does not. And I must say that I can't think of a better way to put it so just remember this; whatever is is the only thing that matters and that means if I am trying to find something nothing else, at that moment in time, means anything; the only relevant thing in life is trying to find that item.

Another aspect of my life this plays out, besides going on scavenger hunts in my own home (seriously, unless you've seen me in finder mode I don't know if you can appreciate the thoroughness of one of my hunts for a lost item) is the mental effort my mind does when something is forgotten. Memories are important to me and to forget something, for me, is like losing a part of myself. My memories are sacred to me and if I know only 75% of the story then my mind will dwell and use all available processing resources to come up with an answer. I can't tell you how many times I've given my dad a partial memory of an event when I was under the age of eight wanting the full story so my mind can be put to ease.

Recently, this past week, I've been suffering with this very thing as I can't remember something from my own presentation. One thing about my presentation is that, over the past four years, it has changed. The concepts may still be the same but the stories and presentation of them has. There is one story, however, that I used for well over a year but I can't remember where in my presentation I used it. I remember the event though, and I even blogged about it in 2012 (and what an event it was!) but I can't remember how or where I used this story. On top of that I've asked ten people who have seen my presentations and remember this story but, they can't remember where it went either!

I'm sure you're thinking, "what does it matter where it went?" and that answer, logically speaking, might make sense because, after all, if it were vitally important to my presentation I'd remember. Right? Maybe, but the fact is I am curious and I've thought and thought and thought and over the weekend I even rehearsed my presentation in my head and I came up with nothing.

To forget something is to lose a part of myself and even though it may seem irrelevant the fact of knowing where in my presentation that went would put me at ease. Right now, because it is forgotten, it is the only thing that matters. And I must also say that this can be very tiresome because doing tasks that need to be done take more energy because my mind is off trying to remember something.

Maybe this week will lead me to some answer as to how I used the Henry County library event in my presentation. It was in my presentation for well over a year but as of this moment now I can give you the story word for word as I would in my presentation, but as to where it belonged all I have are questions and that, right there, makes it the only thing that matters.

Thursday, January 23, 2014

Not much

I don't have too much to say today. I'm still happy about yesterday's post and the emails I've got from others who have shared an experience like mine. 

Wednesday, January 22, 2014

Endings

I don't know how many times I have used the line, "change is bad" in the course of my blog but it's been more than a few. Change can happen on any level and this is something that others not on the autism spectrum might have a hard time grasping. Sure, a change like a favorite food going away can cause a rather intense situation as a long time ago my favorite cereal was Circus Fun and it was discontinued and I can remember my dad telling me he went to a dozen grocery stores trying to find it but it was gone. Then there are other changes that don't have any direct impact on myself and yet my response was great such as the day Bob Barker left The Price is Right, or when a business that is on my daily commute moves or goes out of business.

My world is one of sameness which means if everything can remain as it is today then there would be no change and no processing of the change. Also, if things stay the same and places stay the same memories will always be fresh. When I go to a place that has memories tied to it the sensation is as if all those points in time are right now. I guess, in a way, I do have a fear of forgetting dates, times, and people.

In the past few weeks there was a major change of a place I used to go to. Many of you, here in America, I'm sure at some point in time, went there to rent the newest movie, or if you were like me to rent a videogame. Yes, BlockBuster video went out of business and I did everything I could to not consciously accept this. All this changed a few days ago when I saw a certain sign. I'll get to that sign in a bit, but why is BlockBuster so important to me? After all, it was just a business more than willing to take your money and keep the product, right?

My first memory of BlockBuster was after one of my dad's church services (he had a church in Indianapolis as a pastor) and this new place opened up called BlockBuster so we went and the selection was, well, awful. It was three or so years later that we would go back to one and there was a ritual that kept me looking ever forward during the time in school and that was Friday afternoon. Every Friday, after I had endured the schoolweek, I'd get to go to BlockBuster and rent a game for the weekend.

This Friday tradition continued on when we moved to Saint Louis and in fact the first store I ever got anything at was a BlockBuster near the home we moved to when my dad bought me a Sega Genesis. Fridays continued to be great and the staff at this one would talk with me for a very long time about games. I can remember one worker who knew more about games than I did and she and I, and sometimes my dad, would talk about Mario, or Link, and the adventures that lie ahead in future games. She was a college student and eventually left, but each time I would drive by that location it was as if time was still 1994 and everything just seemed right.

Time moved on and eventually I no longer rented anything and as technology advanced, and I discovered Netflix, BlockBuster, sadly, became obsolete for me and obviously countless others because just in the past few weeks their locations ceased operations.

One thing I struggle with greatly in life, as do many others on the autism spectrum, is change and beyond that I struggle with endings and finality. Take that cereal, I was maybe four or five years old when it went off the market and I still remember the sensation that someone took a vacuum to my lungs when I was told it was no more. While the world is ever changing, and things we use today, and shops we frequent today, may be gone tomorrow, I want things to remain the same. What is just a store for you might have a decade of memories for me and when there is an end it feels as if there is a gigantic, gaping hole in my memories.

As I said, I tried to ignore this passing but I drove by a empty BlockBuster the other day and there was this sign. Of all signs I've ever seen this had the most dire of statements. Just the statement alone, even out of this context, would give me problems because I struggle with the concept of forever. If you put the words change, and forever together that is a bad combo, and this sign, well, I'll let it do the talking because moving forward there's a whole generation that won't share in my yearning for Fridays and the time spent driving to BlockBuster wondering what new games were out and a whole generation won't know the wonderful smell every BlockBuster had. In the end, and this is an end, another part of life has changed and is gone.




Monday, January 20, 2014

Back to the road

It's going to be a fun evening for myself as after bowling I head back on the road headed to Springfield as I have a presentation to a court tomorrow. 

It's evenings like tonight that I truly enjoy. I think back to my first road trip for presentations almost four years ago and every time I get the honor to travel anywhere like this I get excited. Today is going to be even more interesting because at bowling my team has a chance to win the quarter tonight and last week I set a new personal best three game series with a 760! Oh, if I could improve on that this week. 

Friday, January 17, 2014

Still Nearing 1,000

I did mention that I am closing in on blog post 1,000 and it has been fun compiling my list for what I will run as blog posts 990-999 as a "best of" series. My mind has been somewhat hyper-focusing on this because, after all, 1,000 posts is an amazing number and I hope, when the time for this series to come, you enjoy the list. But anyway, I too have been looking back, which is something I don't normally do, and to be honest I've just read the titles of my posts, but I can't believe how far I've come. It all started under four years ago and I've been coast to coast several times, I've had two stories of ER visits, two trips to Canada, and I was even on a panel with Temple Grandin. As exciting as the first 965 posts have been I just have to wonder what the 2nd 1,000 posts will bring.

Thursday, January 16, 2014

Another Dosage of Hope

I forgot how exhausting presenting can be! For the past month my schedule has been rather sparse but in the past three days I gave five presentations and there really is an endurance that has to be there in terms of mental sharpness and more importantly one's voice. Don't get me wrong as my last presentation of the five yesterday went great, but today I am rather worn out.

Anyway, what is it that adds to my endurance and give me the strength to go on when I have on the go go go? It's presentations like the one I had in Patton, Missouri yesterday. I have gotten to know my Missouri geography but I had never heard of Patton until this presentation despite the fact that, according to Wikipedia, the high school basketball team has the national record for most three pointers in a game. Anyway, yesterday, I found my way there to give a presentation to students and once again I was blown away with the impact of my words.

Of course, back in October, I did do a national tour which focused on schools but when it's been a while I forget what it is like to present, especially to students. I was somewhat nervous before I started yesterday and my nervous yawns kicked in (truly it was a need record of yawns. My coworkers can attest to this) and I was sure I was going to forget my presentation, or at least the order of information I present.

The time of starting was drawing near and when it's time to begin, well, nerves or not when the show starts it has to start and it's odd, at least for me, how the second I start talking in a presentation it becomes as easy as breathing (that is, when you aren't thinking about breathing which now I have to apologize because you're probably having to consciously think about breathing. Don't worry, it'll go away soon) and there is no thought put into it.

I went my normal twenty or so minutes yesterday which left 40 minutes for questions and to begin there weren't any hands up. I became nervous because that was going to mean I was going to have 40 minutes of time to fill with random stories that don't really have a flow. Each passing second felt like an hour and then finally I had a question. Then after that I hand another one, and with each passing question there were more hands and when time expired I had more hands up than at any other point. And not only that, the questions asked were profound and showed an extreme curiosity about this thing called autism and it is here that I am filled with hope. Reaching students, and teachers for that matter, is one of the most important things I think we can do and whether it is in a big city, or a small town, I have seen the thirst for knowledge and as I write this I have a big smile on my face because I know, without any doubts, that the level of autism awareness and understanding inched ever forward yesterday.

Wednesday, January 15, 2014

Capped

Maybe this blog will be too strong, but I have a lot of passion towards this at the moment...

Okay, I want you to think about this; if you were buying a sports car would you buy one that had a max speed of 35mph? If you were buying season tickets to a baseball team would you be excited if they promised "no more than 20 wins" in a season of 162? If investing in stocks would you put your money in a stock that there was a guarantee that it would never go higher than the price you purchased it?

I could come up with more and more of those situations where what is will always be and improvement is impossible, but I hope you get the point as to what I am trying to explain here. Anyway, I would hope that in all those situations I stated you would say, in a loud manner, "NO!" because accepting an expensive sports car that only does 35 is a joke, a home team is supposed to win, and aren't stocks an investment and if there's only a guarantee to lose then that isn't a wise choice. What do these seemingly asinine scenarios have to do with anything? Lately I've been hearing a trend that has been getting to me and that is that certain small parts of society are now essentially putting a label cap on those with Asperger's.

Here's the problem with putting a cap on a person. First, I'm fine with my diagnosis of Asperger's and call it a label, call it a syndrome, whatever you want to call it my goal in life is to define it and not have it define me. However, as I found out when I got first got diagnosed it is easy to let it define yourself. Longtime readers are probably a little tired of hearing this story, but my doctor, when he diagnosed me (after reading an assessment from another agency) said, "good luck" so I was left to figure it out on my own. I went to the Internet (this was back in 2003) and the first website I found stated, and stated boldly I might add, that people with Asperger's will, "Never have a job, never have friends, and will never be happy" and at that moment a cap was placed on my life.

After reading that website I gave up on life; I truly did. I stayed that way for 15 months and it wasn't until yesterday that I came up with this concept of being capped, so to speak, that I could explain how it felt. Because of the dire destiny I read I believed my life was at its peak. There was no room for gain, no room for growth, and who I was, whatever I was, was it. There would be no job, no understanding, and in a world like that how can one find the logic to fight on? How can one, if failure is the only perceived outcome, continue to look to each day with vigor and excitement?

I feel it is very easy for a person to be put in a situation where they feel capped. If there is no understanding within a school a person may quickly feel as if the current situation is forever. Another major mistake is for people to speak about a person with autism in their presence as if the person isn't there. Whatever is the cause I've been hearing this story too much as of late. I know the feeling and it is one of utmost despair. I like the word I've used hear in, "capped" because it means to, "restrict or limit" and isn't that the opposite of what it means to be alive? Yes, there are going to be things I'm going to have a more difficult time than others on, but that doesn't mean I'm capped in all of my life. There is always room for growth and there's always room to learn. If anyone in my surroundings, when I was younger, would have verbally capped me then I don't know where I would be today. You see, we on the autism spectrum are often our own worst enemies when it comes to convincing ourselves that we're going to fail, or that we aren't perfect but if we hear that from others I can think of no more condemning sentence that can be handed out. In other words, if you tell me I can't then I very well may never be able to.

My belief is this; there is so much human potential in all of us and it is, sadly, very easy to let that potential be squandered. Every so often I have a blog post like this that restates and reshapes my mission in life and once again here's one of those blogs. There's a problem out there and while it isn't widespread I've heard too many stories. Well, to be honest one story is one too many and I've heard much more than one and I hope, and pray, that someday my job is no longer needed. Imagine that world; a world where there are no caps, no, "you'll never have a job" and no, "If you were normal it would be easy." What a world that would be! I don't know about you, but I'm going to do my part, and maybe a little more, to get us there.

Tuesday, January 14, 2014

Stories

I'm on the road today and blogging from my phone but each time I think the progress we are making in terms of autism understanding and awareness I seem to hear a horror story. 

When I began four years ago I imagined that we would be in a place, today, much further than we are. Yes, I think the overall awareness and understanding is up, but if there's just one horror story out there then that is one too many. While this may seem to be an unrealistic level of perfection I think of the long term damage caused by misunderstandings and the like. 

As I said, today's blog is short, but I'm just riled up today in thinking that I have to do more. The stories I've heard over the years have been heartbreaking and we have got to get to a place where these stories don't happen. 

Monday, January 13, 2014

To Feel An Emotion

I wrote back at the end of 2012 on here regarding my loathing of media "experts" proclaiming that people on the autism spectrum lack emotions. While I am not everyone and you must remember that, "if you've met one person with autism you've only met one person with autism" I know full well that a lot of us on the autism spectrum have emotions that run deeper than most people realize.

My goal in daily life is to avoid emotions. This, perhaps, isn't the best of strategies, but it's one of necessity because it seems that emotions, for me, come in an unfiltered way. What does this mean? When an emotion is triggered, and especially I'm referring to an emotion of sadness or the like, it quickly becomes overwhelming which instantly turns my greatest strength of hyper-focus into my biggest weakness because, when the emotion is being felt, there is no other thing that is felt.

Another aspect of this is the fact that if there is one emotion going on this makes other things often bigger, or worse, than they actually are. There's a rippling out effect of sorts here that can have an event from a few days ago, or perhaps weeks or more, that is creating issues in the present. And on top of this, because talking about emotions is something that most people on the spectrum aren't the best at, it can be confusing to those around us as to how or why whatever is going on is indeed going on.

Often times I have tried to deny my emotions and have tried to ignore that they are there because as soon as I allow myself to feel it's as if a dam is bursting and my emotions than I know how to handle come in which means this; if I can stay factual and distant then I may avoid the dam bursting. This is the reason as to why I think we get associated with having no emotions for those that don't have the best of understanding of the autism spectrum. If you ask me anything emotional odds are you will get my generic, "I don't know response." Typically I do know but the amount of discomfort it takes to swim through the dam bursting is too great so I will try and deny the entire event.

In my presentation I mention the two times my mom fell while we were headed to the Rumble in Fort Wayne race which is held between Christmas and New Years. She fell in 2008 then again in 2010 and I haven't mentioned it yet but she once again fell in 2013. It wasn't on the day of the race this year but rather it was a few days before. We were leaving a store and she was carrying a bag and something distracted her slightly and she managed to trip over a speed bump in the parking lot. I saw it and gave my usual, "uh oh" in the tone of non-committal fear and I froze just as I did the previous falls. If you don't know the stories I'll summarize briefly that, in each fall, I was essentially useless and cold towards the event. On this fall I actually was able to remember the process that my brain went in terms of emotions.

The reason I freeze isn't out of lack of caring but rather of supreme fear. All the worst case scenarios come to me instantly and I analyze the fall; did that break a hand? an arm? perhaps a leg? If a leg would it have cut an artery or vein? How bad is this going to be? This process continues on and on and is instantly crippling as I can't even give a facial expression of concern because I am experiencing a deluge of unfiltered fear and concern. Doesn't this seem a bit odd and impossible; that the visible signs of being uncaring, cold, and unemotional are caused by having too much emotion?

For those around us, I'm sure, confusion is often a result of all this. However, to feel an emotion for myself is to experience an event that can last weeks or longer. To experience sadness can leave me sad for months. To experience loss can stay with me for years and yes, I know that this applies to everyone because life isn't easy. Yes, that's true, but my brain has a great strength (and weakness) of being able to hyper-focus on one thing and to experience an emotion is to experience it in it's fullest, purest, and most unfiltered form.

As I started to write I was seeing a Dr. (this Dr. wrote one of the endorsements of my book) and he asked me about emotions and I said this, "If you gave me a scale 0-10 my emotions stop at about a 2 unless it goes over that and if that's so it's a 10." As with most things on the autism spectrum there is no middle ground. I live in a all or nothing state and if an emotion gets to the point of tripping over the 2 out of 10 mark then it's the only emotion felt and there is nothing else. What is also difficult for those around us is understanding the fact that we have a hard, if not impossible, time realizing that things change. In the midst of an emotion the way my brain works is that this emotion is the way I am going to feel forever.

I do hope this post has helped you understand emotions for us on the autism spectrum just a little bit more than when you began reading this post. For those unaware and ignorant of the autism spectrum the notion that we have no emotions and can't be hurt is severely wrong and can lead to some highly damaging things to be said and here's the thing; because we are outwardly unemotional there's a chance no one else will ever know just how much pain and sadness were caused.

Friday, January 10, 2014

Dates and Years

One of the things that I struggle with is having a memory that is too good. I know I'm not alone on this because I'll have others with Asperger's come up to me after a presentation and ask, "do you have trouble moving on, or having memories just stay with you?" and I will smile and say, "most certainly."

So what is it today that I'm remembering? One year ago today I was in San Antonino speaking at a conference and during that presentation I hit 20,000 people spoken to. Of course, since then, I've almost doubled that number but there's something about memories that makes places in time stand out and become bigger and grander than at that moment.

That trip last year, well, I remember it all. When a memory like this gets playing it's hard to extinguish it as it will just stay there. One thing that made this trip so exciting for me was that this was my first time flying out of Saint Louis to keynote at a conference. As a speaker I took this as one of the biggest honors in the whole world and despite everything else I've done I'd give just about anything to go back a year to relive that trip.

There's another aspect to this and that is memories of the present that I know will be something like that of San Antonio of last year. As I mentioned last week, my mom is visiting me here in Saint Louis and originally she was going to leave today but has since decided to leave tomorrow. My house now feels more like a home since she has been here and every little thing, at some point in time, will be something big and knowing this, well, it's rough because there is no off switch which makes enjoying the present a difficult task. That's what I'm going to try today, but I just don't know.

Thursday, January 9, 2014

To Make a Mistake

I can remember a blog I posted in my first year in that I stated, "perfection is a virtue" and there was a comment from a reader that said something along the lines of, "I feel very sad for you living like that" but that is the way I live. I do everything I can to be mistake free because handling mistakes and all the ramifications that come with them are overwhelming. I've been mistake free at my job up to this point but since I'm writing a blog on this topic I'm sure you've already figured that this streak has come to end.

A common question from friends is, "Aaron, how do you keep track of your schedule? I mean, it's exhausting just keeping track of you on Facebook." I respond that I have everything on my iPhone calendar and I take each day one at a time. It was awesome on my national tour to essentially have a script of the entire month as to be where/when. It was on this tour that the seeds of yesterday's mistake were planted.

On October 10th, between two presentations, I was asked my availability for the 2nd Wednesday in January and in a rush I said the 9th looked good. I got a response that this worked and into my calendar it went. Now, if you are reading this today, on January 9th, then you know today is not the 2nd Wednesday but rather the 2nd Thursday. The only thing I can think of is in that in my haste I looked at January 2013 which the 9th was the 2nd Wednesday.

Dates aside, last night I was having dinner with my girlfriend and mom at Fortel's Pizza Den and I got this e-mail stating if everything was okay because they were expecting me. I panicked because I instantly lost track of days and thought it somehow warped from Wednesday to Thursday, but I looked into my calendar and it said Wednesday. I was now confused.

Two days ago I got an e-mail confirming this small presentation and I asked if my mom could come because she has never seen me present at all and I was told this was okay. In that e-mail I was going to put in something like, "On Thursday..." or, "see you Thursday" but then I thought that would be a bit redundant. There was a major thing I missed in these e-mails, however, and I blame my tunnel vision/hyper focus as the subject line read, in big bold letters, "WEDNESDAY..."

So for the first time I missed something I was scheduled for. It had to happen eventually, right? That's not the attitude I have despite my mom and girlfriend saying, "no one is perfect" but an error like this is unlike me. Perhaps, in the end, missing last night is actually going to benefit more people because the presentation was to our sibling support group we have and due to the still sloppy roads the turnout was low and it was an easy reschedule as I'm now scheduled for the 2nd Wednesday in February and unless a blizzard pops up the turnout will be back to normal, but that's not what I see. The thing I see is a mistake and ever since I realized this it's the only thing that's been on my mind.

If there's one thing that seems to perplex teachers the most it's this problem when a person makes a mistake. I do this after almost every presentation; I don't see what I said, what the response was, or the impact but I'll remember that one story, or one line that I omitted. So often we on the autism spectrum don't see what we've done, or are going to do, but we see that one slight (or in this case somewhat major) mistake. Just six days ago at a presentation I had several teachers with students with Asperger's talk to me on this subject and unless you live with this I don't know if you can understand the daily pressure we are under by ourselves to not make mistakes.

So what is it? I mean, if to error is to be human why are errors unacceptable to us? A good chunk of this lays within social anxiety. How so? If I can be as perfect as can be then there will never be an unexpected conversation. If a person gets the job done then there will be no, "Look, we need to talk..." type conversations and because anything 1% confrontational or anything near a conversation talking about a mistake gives me a feeling of falling at the speed of mach 4 I must be as perfect as can be. Essentially, to be error-less is to achieve a sense of invisibility and my goal, in public, is to be invisible. On the flip side, another thing I've heard from teachers, and my parents will agree with this as I was this way, taking compliments can be difficult for us. While not all people on the spectrum will be the same and this won't apply to everyone, some of us, including myself, struggle with the concept of a compliment. It wasn't until writing this blog that I realized why and I believe it to be the same as making a mistake. The random conversation is just that, random, and since random can't be calculated I get extremely fearful when it happens. On top of that I don't really know how to react to either type of conversation be it a mistake or a compliment so either one brings about a burst of social anxiety.

I hope you can see the problems all this brings; no one is perfect and the only way a person learns is through mistakes, right? I mean, no one can do everything perfect the first try. And yet, often times, that's the standards we put upon ourselves because perfection brings a safety net of not having to socialize or speak about anything we've done. This too goes to the fact it's easier for us to talk about facts than anything about ourselves.

My mistake I made was bound to happen and of all the times for it to happen this was the best because more people are going to here me now and it was certain some were going to be disappointed because they were unable to make it. So that's good right, things work out in the end, right? Only if I could convince myself of that. But, 1 mistake in 470 presentations isn't bad with all the flights, time zones, and some 75,000 miles I've done with this job is okay, isn't it? Again, only if I could accept this. I go back to, "to error is to be human" and that's what I am. If anything to error is to be normal because the one thing everyone has in common is making mistakes, right?

Wednesday, January 8, 2014

My Fear

My story, in terms of the story of who I am today, truly began 10 years ago with my Asperger's diagnosis. There were a lot of unknowns and what I had read, well, my future looked hopeless. There was a lot of fears back then; what would become of me? Would anyone ever understand me? Could I ever be halfway likable? And, would I ever stand a chance at ever having a chance to do anything in life?

Those were just some of my fears from ten years ago and while times have changed I still have fears, but the fears of today certainly do not resemble the fears of 2004. 

I fear, today, that there's someone in the place that I was. I lived in that pit of despair for so long and no one should ever visit that place. 

I also fear the ignorance factor. I encountered this a lot and in my travels and hearing from others I know this still is a common occurrence. I believe most people have this happen by accident whether it is a story one might here on the news about an autism interaction at school, or maybe a business, but my fears are that, for the person that has been spoken down to or discarded in any way, may let that event define them. It's so easy for us on the spectrum to allow this happen which is why I fear these events for others. As I said, I believe most of these events happen by accident but nonetheless it is 2014 and the era of accepting ignorance towards autism must come to an end. 

Another fear I have is the continual view that all persons on the autism spectrum are the same. I won't mention a place or profession, but two questions I've received in the past year have been, " are all people with Asperger's in the computer field?" and, "is it true people on the autism spectrum find change to be somewhat difficult?" I'm glad I was able to answer these questions, but in all honesty these people should have known these answers. And this leads me to my greatest fear. 

My greatest fear of all is to fail at my mission, job, and passion in life. My fear is a world where my voice, and voices like mine, are silenced. Would a world like this ever exist? I doubt it, but I fear the day I can no longer do what I do. Don't get me wrong, if the world got to a level of 100% autism awareness and understanding then technically my job would not be needed, but I don't know if this will ever happen. Anyway, I fear not being heard; I fear speaking and having no one care. I know what it's like to live in a world where that was the perception and the void that this creates is something that will test a person's soul. As I said, I believe most people want to do the right thing and for many people autism is something that they've only heard of and is not something they can identify or understand in the slightest. As I also said though, it's 2014 and I firmly believe the era of ignorance has to end. I've been so blessed to talk to nearly 40,000 people but I also feel this isn't enough. I can easily forget where I came from when I'm on stage presenting, or when I'm writing about recent events on my blog, but I always will come back to the person I was ten years ago; confused, sad, and in desperate need of hope. My fear is that, for some, they will stay in that world forever when there's so much human potential there. Others may have fears or phobias of virtually anything, but my greatest fear is failure and silence. 

Tuesday, January 7, 2014

Nearing 1,000

With the weather and roads the way they have been I've had plenty of time to think and I've been thinking about my blog. This blog has become a part of my life as all day every day I'm trying to use my experiences that are happening then to somehow make it into a blog post. This has been what I've been doing since March 2010 and in just about 5-6 weeks I will be hitting my 1,000th blog post.

For my blog posts 990-999 I will be running a series that will have my top 10 blog posts. I won't be choosing these as I've asked a panel of people to give me what they're favorite are but I am excited to have this series and I'm looking forward to the day I can write my 1,000th post.

Monday, January 6, 2014

An Extended Visit

I mentioned on Friday that my mom was coming to town and because of the winter storm she is still here. On Saturday we did a tour of Saint Louis of places we went and I showed her my office and my girlfriend gave us a tour of her lab.

It's odd how fast it felt for my mom to be in my house to feel natural and because of the life-threatening cold she will be here until either tomorrow or Wednesday. I am wondering what it is going to feel like when she does leave because she hasn't been here for almost a decade and in less than 24 hours she might be on her way back home in Nebraska.

Friday, January 3, 2014

A Visitor

Later today I will be getting a visitor at my house as my mom, on her way back to her home in Gordon, NE, will be stopping by. 

This is going to feel a little different because my mom hasn't been in Saint Louis since, well, I think it was 2004 so it's been a long time.  

This is also, obviously, going to be the first time she's been in a place of my own. Tomorrow, weather permitting, we will be taking a small tour of Saint Louis of places we went to years ago and places that now mean a lot to me. 

As for now, I'm getting ready for my first presentation of the year (and it hasn't been a good morning, I overslept, forgot my wallet, and I am an hour early to my presentation) so I need to prepare for the first of what will hopefully be another record breaking year. 

Thursday, January 2, 2014

2014: The Race Continues

It was just four years ago this week I gave my first presentation as an employee of TouchPoint Autism Services. It's amazing how fast time has gone as I can still feel the apprehension and tension I had driving to the Saint Louis Police Academy as I was sure I was going to fail. Thankfully, failure didn't happen and as a new year is upon us I feel the need to explain that my passion, this race I am in, is still going strong.

The race I talk about has nothing to do with cars or positions but rather the race to spread autism awareness and understanding. I've been asked what I mean by race and in the past and there's two answers; the first is that I've always wanted to race cars. That was my plan growing up and there wasn't a thought otherwise to this plan. Life works in odd ways because I'm still racing, but this race has much more relevance to the world in whole and the reason I say race is because it's just that; since early intervention is critical the need for the world to understand it is critical. But it's beyond that as there are those who may be like me in that the diagnosis will come later in life. Each day a person goes through life wondering why they are different, or why they don't fit in, could be a day spent in agony.

A couple days ago my girlfriend asked a profound question which was, "Who is your presentation and message primarily geared towards?" I never truly thought about this but my answer didn't require much thought because it's for everyone. My message is for those who have been diagnosed early as understanding one's self is important and understanding of those around us can help us greatly. Also, my presentation is for those who may be diagnosed, or will know someone diagnosed in the future. There's another element to this and this next story shook me to my core sometime last year.

I won't mention when or where this happened, but my presentation is also crucial for those that know they're different and want answers. I had just presented to an entire student body and many students were talking to me afterwards. There was one student who was waiting patiently and he kept waiting, and waiting when finally no one else was around and just as he was about to speak he broke down in tears. I didn't know what to do as no one else was around; it was just me and him and I had no idea what was going to happen next. Had I offended him? Was he angry? My mind was a mess trying to figure this out when he said, "Every... Every... Everything you said... is me. My family doesn't understand me and I am always taking things literally at home... I... Everything you said..." and after that he lost his composure once more and I gave a five minute speech about autism, Asperger's, and all the hope out there. I did my best, and to this day I replay this event at least five times a day, but I notified the school and the official process of diagnosing began and the family was contacted and the path towards understanding had been started.

That last story is the essence of my race. Each day that goes by could be another day in misery. The sole thing I wanted after I was diagnosed was someone, anyone, to simply understand me. I thought the world hated me; I used that wordage a lot in my first writings. It isn't that way though and the reason why my race is so important is that there are others who are where I was and since I know what that feels like I must continue this race. Finishing 2nd in this race is unacceptable. Each day that goes by is another day that someone out there is silently screaming for help. I was blessed on that day to have been able to reach that student that I mentioned the way that I did. What had been confusion and frustration finally had a name. Last year was an amazing year, but 2014 is a new year and I have always believed that one can't rest on what they've done but rather must always come up with new ideas and reach new heights. I've got some ideas for this year which I hope I get to share with you at some point in time, but in the least the new year is upon us and the race is most certainly going to keep a vicious pace as it must because the stakes are too high to fail.